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Message Number 266133
Re: Haglund's Deformity View Thread
Posted by john on 7/08/10 at 22:25

The Response of Modern Medicine
Modern medicine continues to search for drugs, devices and surgical procedures to eliminate chronic foot and hand pain. Anti-inflammatory drugs have become a billion dollar business. While the drugs may provide temporary relief, they do nothing to correct the underlying condition causing the pain. In fact, in the long run, these medications do more damage than good.

Prolotherapy vs. cortisoneAnother common pain treatment is a cortisone shot. It's also one of the quickest ways to lose strength at the ligament-bone (fibro-osseous) junction. Cortisone and other steroid shots have adverse affects on bone, cartilage and soft tissue healing. Unfortunately, many people suffering from chronic pain look for quick relief without thinking about the long-term, potentially harmful side effects that could occur. The problem with cortisone is that, although immediate pain relief is possible, it inhibits nearly every aspect of healing, making the pain condition even worse!

In simple terms, anti-inflammatory drugs and cortisone shots are anti-healing. They result in long-term loss of function and even more chronic pain by actually inhibiting the healing process of soft tissues and accelerating cartilage degeneration. Plus, long-term use of these drugs can lead to other sources of chronic pain, allergies, leaky gut syndrome and other serious side effects.

Finally, when all else fails, patients who experience chronic pain, particularly joint pain, are referred to a surgeon. Unfortunately, surgery usually makes the problem even worse. Surgeons will use x-ray technology as a diagnostic tool, which does not always properly diagnose the pain source. Plus, decisions to remove cartilage tissue, bone or a disc will most commonly result in arthritis. And so, the treatment of one pain condition simply leads to another.

The Natural Medicine Approach to Treating Foot and Hand Pain
Ligaments of the wrist A better approach to alleviating chronic pain (forever!) is to stimulate soft tissue, ligament and cartilage repair with Prolotherapy. One cause of chronic pain that is frequently overlooked is referred pain, that is, when ligament injury or weakness in one part of the body causes pain in another part of the body.

In the case of chronic hand pain, the source of the problem could actually be in the wrist. Foot pain, on the other hand, is often the result of an injury to the spring ligament, an elastic ligament in the sole of the foot. Treating the affected areas typically eliminates chronic pain in the food and the hand.

Anatomy of the bottom of the foot Most people have chronic pain because of ligament weakness and cartilage deterioration. Here's what happens:

1. A ligament is damaged through overuse or trauma, such as a sports injury or an accident.

2. Because of the ligament's poor blood supply, it does not heal (unlike muscles, which have a good blood supply and heal quite easily).

3. Over time, the injured ligament weakens, like a stretched rubberband that has lost its elasticity.

4. Since ligaments function as joint stabilizers, the injured ligament is no longer capable of doing its job.

5. As a result, the muscles must compensate. They begin to ache and spasm and, eventually, the joint or vertebra in the area begins to compensate as well.

6. Overgrowth of bone occurs to help stabilize the injured ligament, which leads to arthritis, and a whole new level of pain and disability.

This downward spiral of pain can be halted and reversed only by stimulating healing at the source—the ligament. The only proven procedure that stimulates this kind of healing is Prolotherapy.

Prolotherapy is the safest and most effective natural medicine treatment for repairing tendon, ligament and cartilage damage. Prolotherapy stimulates the body to repair painful areas by inducing a mild inflammatory reaction in the weakened ligaments and cartilage. The inflammation causes the blood supply to dramatically increase in the ligament, alerting the body that healing needs to take place. In the simplest terms, Prolotherapy stimulates healing.

Prolotherapy offers the most curative results in treating chronic pain. It effectively eliminates pain because it attacks the source: the fibro-osseous junction, an area rich in sensory nerves. What's more, the tissue strengthening and pain relief stimulated by Prolotherapy is permanent!

Nearly all pain conditions can be successfully treated with Prolotherapy, including:
Osteoarthritis
Tendonitis
Migraines
Sports Injuries
Loose Joints (Hypermobility)
Fibromyalgia
RSD Pain
Temporomandibular Joint Syndrome (TMJ)
Sciatica
Herniated Discs
Degenerated Discs
Degenerated Joints
Chondromalacia Patellae
Osgood-Schlatter Disease
Carpal Tunnel Syndrome
Ligament Sprains
Plantar Fasciitis
...and Back, Hip, Neck, Shoulder, Knee, Elbow, Foot, Ankle, Hand, Wrist, Finger and Toe Pain

To learn more about the Prolotherapy procedure, click here. To read how a man suffering from chronic heel pain found relief with prolotherapy, click here. And to learn why the treatment approach referred to as MEAT (Movement, Exercise, Analgesics & Treatments) is superior to RICE (Rest, Ice, Compression and Elevation) when treating injuries, click here.

If you are interested in more information about Prolotherapy or to schedule an appointment with one of our natural medicine specialists, please contact Caring Medical at 708-848-7789, or online using our contact form.

Click here to receive our FREE electronic newsletter.

Products:

* Prolo Max
* TRMA
* Cod Liver Oil
* Bromelain Max
* MSM
* Pro-Cartilage
* Rapid Response 5
* Rapid Response 1


The treatment regimens suggested here are based on the experience Caring Medical. They do not apply to every case or condition. A person using these recommendations without the aid of a personal physician does so at their own risk.

This information is provided for informational purposes only. It is essential to have your condition evaluated by your own personal physician. For an appointment with Ross Hauser, M.D., please call 708-848-7789. or email us at scheduling at caringmedical.com.Treatment of Foot Pain:

The Response of Modern Medicine
Modern medicine continues to search for drugs, devices and surgical procedures to eliminate chronic foot and hand pain. Anti-inflammatory drugs have become a billion dollar business. While the drugs may provide temporary relief, they do nothing to correct the underlying condition causing the pain. In fact, in the long run, these medications do more damage than good.

Prolotherapy vs. cortisoneAnother common pain treatment is a cortisone shot. It's also one of the quickest ways to lose strength at the ligament-bone (fibro-osseous) junction. Cortisone and other steroid shots have adverse affects on bone, cartilage and soft tissue healing. Unfortunately, many people suffering from chronic pain look for quick relief without thinking about the long-term, potentially harmful side effects that could occur. The problem with cortisone is that, although immediate pain relief is possible, it inhibits nearly every aspect of healing, making the pain condition even worse!

In simple terms, anti-inflammatory drugs and cortisone shots are anti-healing. They result in long-term loss of function and even more chronic pain by actually inhibiting the healing process of soft tissues and accelerating cartilage degeneration. Plus, long-term use of these drugs can lead to other sources of chronic pain, allergies, leaky gut syndrome and other serious side effects.

Finally, when all else fails, patients who experience chronic pain, particularly joint pain, are referred to a surgeon. Unfortunately, surgery usually makes the problem even worse. Surgeons will use x-ray technology as a diagnostic tool, which does not always properly diagnose the pain source. Plus, decisions to remove cartilage tissue, bone or a disc will most commonly result in arthritis. And so, the treatment of one pain condition simply leads to another.

The Natural Medicine Approach to Treating Foot and Hand Pain
Ligaments of the wrist A better approach to alleviating chronic pain (forever!) is to stimulate soft tissue, ligament and cartilage repair with Prolotherapy. One cause of chronic pain that is frequently overlooked is referred pain, that is, when ligament injury or weakness in one part of the body causes pain in another part of the body.

In the case of chronic hand pain, the source of the problem could actually be in the wrist. Foot pain, on the other hand, is often the result of an injury to the spring ligament, an elastic ligament in the sole of the foot. Treating the affected areas typically eliminates chronic pain in the food and the hand.

Anatomy of the bottom of the foot Most people have chronic pain because of ligament weakness and cartilage deterioration. Here's what happens:

1. A ligament is damaged through overuse or trauma, such as a sports injury or an accident.

2. Because of the ligament's poor blood supply, it does not heal (unlike muscles, which have a good blood supply and heal quite easily).

3. Over time, the injured ligament weakens, like a stretched rubberband that has lost its elasticity.

4. Since ligaments function as joint stabilizers, the injured ligament is no longer capable of doing its job.

5. As a result, the muscles must compensate. They begin to ache and spasm and, eventually, the joint or vertebra in the area begins to compensate as well.

6. Overgrowth of bone occurs to help stabilize the injured ligament, which leads to arthritis, and a whole new level of pain and disability.

This downward spiral of pain can be halted and reversed only by stimulating healing at the source—the ligament. The only proven procedure that stimulates this kind of healing is Prolotherapy.

Prolotherapy is the safest and most effective natural medicine treatment for repairing tendon, ligament and cartilage damage. Prolotherapy stimulates the body to repair painful areas by inducing a mild inflammatory reaction in the weakened ligaments and cartilage. The inflammation causes the blood supply to dramatically increase in the ligament, alerting the body that healing needs to take place. In the simplest terms, Prolotherapy stimulates healing.

Prolotherapy offers the most curative results in treating chronic pain. It effectively eliminates pain because it attacks the source: the fibro-osseous junction, an area rich in sensory nerves. What's more, the tissue strengthening and pain relief stimulated by Prolotherapy is permanent!

Nearly all pain conditions can be successfully treated with Prolotherapy, including:
Osteoarthritis
Tendonitis
Migraines
Sports Injuries
Loose Joints (Hypermobility)
Fibromyalgia
RSD Pain
Temporomandibular Joint Syndrome (TMJ)
Sciatica
Herniated Discs
Degenerated Discs
Degenerated Joints
Chondromalacia Patellae
Osgood-Schlatter Disease
Carpal Tunnel Syndrome
Ligament Sprains
Plantar Fasciitis
...and Back, Hip, Neck, Shoulder, Knee, Elbow, Foot, Ankle, Hand, Wrist, Finger and Toe Pain

To learn more about the Prolotherapy procedure, click here. To read how a man suffering from chronic heel pain found relief with prolotherapy, click here. And to learn why the treatment approach referred to as MEAT (Movement, Exercise, Analgesics & Treatments) is superior to RICE (Rest, Ice, Compression and Elevation) when treating injuries, click here.

If you are interested in more information about Prolotherapy or to schedule an appointment with one of our natural medicine specialists, please contact Caring Medical at 708-848-7789, or online using our contact form.

Click here to receive our FREE electronic newsletter.

Products:

* Prolo Max
* TRMA
* Cod Liver Oil
* Bromelain Max
* MSM
* Pro-Cartilage
* Rapid Response 5
* Rapid Response 1


The treatment regimens suggested here are based on the experience Caring Medical. They do not apply to every case or condition. A person using these recommendations without the aid of a personal physician does so at their own risk.

This information is provided for informational purposes only. It is essential to have your condition evaluated by your own personal physician. For an appointment with Ross Hauser, M.D., please call 708-848-7789. or email us at scheduling at caringmedical.com.

Result number: 1

Message Number 265119

Re: Graston Technique View Thread
Posted by Matt on 5/11/10 at 21:56

I just had this done on one section of my leg and it's already helping with my Fibromyalgia tender spots. Though, it is very painful and intense and causes the area to be bruised for a few days. While it heals you also have to keep it moving in a wide range of motion so it doesn't cement in the wrong position. This removes scar tissue and has been the one and only thing that has helped the very difficult struggle with my chronic muscle problems.

Result number: 2

Message Number 265118

Re: Graston Technique View Thread
Posted by Matt on 5/11/10 at 21:56

I just had this done on one section of my leg and it's already helping with my Fibromyalgia tender spots. Though, it is very painful and intense and causes the area to be bruised for a few days. While it heals you also have to keep it moving in a wide range of motion so it doesn't cement in the wrong position. This removes scar tissue and has been the one and only thing that has helped the very difficult struggle with my chronic muscle problems.

Result number: 3

Message Number 263223

Re: DR. DSW - will the pain stop increasing? View Thread
Posted by Dottie on 2/03/10 at 19:17

My primary doctor wanted to put me on that medication just this past visit. Unfortunately, I have some sort of esophogeal problem (a 'flap' or something?) that has caused it to be 1/3 of the diameter it should be. That was after a dialation procedure. It used to be 1/5 as wide as normal. That keeps me from being able to swallow pills whole. Can't crush time released meds so that limits me. They actually have a liquid morphine that comes with a dropper. I freaked because the word 'morphine' brings up images of battlefield injuries and surgerical procedures. Not something for your purse!!! I was told that I could take a certain small amount of the morphine with my regular pain pill. I guess this is to increase the potency. But, of course, it didn't decrease my pain so I am going to bite the bullet and follow Dr. DSW's advice to get a couple consultations with pain management. That spinal cord stimulator may be the only thing left to me at present. Oh...but I HATE the thought of even thinking about entering an operating room again. I am going tomorrow to my rheumatologist for a heart-to-heart. Having fibromyalgia really puts a monkey wrench in the whole Me Versus Pain situation. Bla.

Result number: 4

Message Number 262986

So, John H View Thread
Posted by SteveG on 1/23/10 at 12:56

How has that fibromyalgia drug worked for you? Are you still having positive results?

Result number: 5

Message Number 262795

Re: Podiatrist or Orthopedic Specialist for heel pain? View Thread
Posted by Becky C. on 1/15/10 at 10:35

YEARS AGO I WAS DIAGNOSED WITH A HEEL SPUR. I RECEIVED AN INJECTION IN THE SPUR BUT CONTINUE TO THIS DAY TO HAVE PAIN. AND THEN RECENTLY I NOTICED THAT APPARENTLY THE SPUR HAD GROWN INTO SOLID BONE WHICH WRAPS BEHIND MY ACHILLES TENDIN FROM ONE SIDE OF MY FOOT TO THE OTHER. THIS AREA IS BONE HARD AND THIS WEEK IT HAS BEEN DIFFICULT TO WALK BECAUSE OF A BURNING, PULLING PAIN JUST BELOW THE TENDIN. IT HURTS WHETHER I AM SITTING OR STANDING. THE PAIN IS DIBILITATING. IS THERE ANYTHING I CAN DO FOR THIS BESIDES SURGERY? I AM ON PAIN MEDS FOR ARTHRITIS AND FIBROMYALGIA, BUT THESE MEDS HAVE NO EFFECT ON THIS PAIN. PLEASE ADVISE ME AS TO WHAT I SHOULD DO. IS THERE A DEVICE THAT MIGHT RELIEVE THIS PAIN? YOUR ANSWER WOULD BE GREATLY APPRECIATED. THANK YOU. BECKY C.

Result number: 6

Message Number 262653

severe foot pain...red feet View Thread
Posted by osugrad on 1/06/10 at 17:36

I have severe foot pain in both feet when I have been on my feet for over 45 minutes. It started in March of 2009...about the time that I was diagnosed with hypothyroidism. They also turn bright red...like they have been sunburned...but not because of a tempature change. I do have carpal tunnel in both hands. I have been to all sorts of different specialists (rheumatologists, orthopedic foot doctors, podiatrists, endocrinologist, neurologist, and my general doctor), and no one can explain to me the cause of pain or why my feet are turning so red. My rheumatologist told me that I have fibromyalgia because some of the pressure points are tender. I don't have pain anywhere else to justify the fibromyalgia diagnosis plus I don't think that bottom of the foot pain is common in fibromyalgia. I do take Gabapentin for pain which doesn't seem to be helping all that much, but Lyrica did...but I gained weight on it so she switched me to the Gabapentin. Because the Lyrica worked, she told me that it is not plantar fasciitis. What could this be? Tarsal tunnel? Nerve damage of some sort?

I am so frustrated over this, and I have anxiety because I'm afraid that I'm going to be in pain for the rest of my life.

Does anyone have any ideas of what this could be?

Result number: 7

Message Number 261997

Re: fibromyalgia & ESWT? View Thread
Posted by Dr. Ed on 11/22/09 at 16:04

sylviam:

ESWT will only work if you have plantar fasciosis. There are three categories of etiologies of plantar fasciitis/fasciosis: 1) inflammation, 2) biomechanics and 3) tissue quality. I term this the 'treatment triad.' The acute stage of plantar fasciitis is typically not long term so if the problem has been around for 10 years, both biomechanics and tissue quality need be examined. Orthotics are a fundamental treatment for biomechanical issues so I am surprised that you have not had that treatment.

You need a thorough exam by a practitioner who can take a more comprehensive look at the problem.

Dr. Ed

Result number: 8

Message Number 261996

fibromyalgia & ESWT? View Thread
Posted by sylviam on 11/22/09 at 15:56

I'm 65 years old. I've had plantar fasciitis in both feet for over 10 years. I've been to 3 different podiatrists. I've had many treatments, including night splint, anti-inflammatory meds, cortisone injections, taping, daily stretches, physical therapy, weight loss, shoe inserts and wearing only Brooks Addiction running shoes. I haven't tried orthotics. I've had fibromyalgia for 45 years. Will ESWT work for me?

Result number: 9

Message Number 261961

Plantar Fasciitis View Thread
Posted by John H on 11/20/09 at 15:04

I have had PF for around 13 years. Had TTS surgery, Baxter surgery, many many custom orthotics, and several trips to Dr. Z to zap me with his wonder machine. Tried acupuncture, massage, and various drugs and shoes. Not much I have not tried. I am better than I was 13 years ago and have learned to deal with the pain. I think initially all of us appear to be in more pain as we also are dealing with something new which creates anxiety and emotional problems as we cannot do what we always have done.

I recently had my Doctor recommend Lyrica for a long standing bad back problem resulting from a helicopter crash and surgery. It is a drug FDA approved for Fibromyalgia so I was using it off label. I found that it has helped my back and also my feet to some extent. It also helped other little aches and pains. I never thought I had Fibro and still do not. I have been on this for two weeks and the good results continue. I hope they continue as one sometime gets results from a placebo effect. I have had no side effects. I am just throwing that out there for you and your Doctor to discuss. Good luck to you all.

Result number: 10

Message Number 261464

Re: Perception is reality & applying for disability is not a sin View Thread
Posted by Laurie C. on 10/22/09 at 15:08

The only comment that I directed to VB was this:

Vernie,

Just to clarify you cannot just sign up for SSDI. You have to qualify. Typically you have to be able to prove your disability will last at least a year. It is not an easy process - SSDI does deny many persons the first couple of times that you apply. Have you considered contacting your local Legal Aid Society? Typically they do provide services based on a sliding scale.

----

I was trying to let her know that this process is not something that you just 'sign' up for but can take years. I was trying to give her a realistic expectation.

I was disabled for 4 years 15+ years ago with fibromyalgia/Chronic Fatigue Syndrome and I had to battle even my long term insurance carrier. The whole intent of my comments was to let people know not to count their chickens before they hatch. There is a process and that they should not count on this as their income as insurance companies and social security change their minds on whether they continue to qualify. Period.

Result number: 11

Message Number 261462

Re: Perception is reality & applying for disability is not a sin View Thread
Posted by Dottie on 10/22/09 at 14:53

I think your successful story is an encouraging light for those who find this site after getting a diagnosis with words they have never heard before. Tarsal what? I simply took exception to the tone of your comments to Vergie about applying for SS disability. No matter the context, she felt it was critical of her. Yeah, it was over the summer but the thread was one of the first ones when I started reading the website. Your words hurt her feelings whether you meant to or not....you hurt her feelings. Then one of the docs basically said she was too emotional. That is effed up as well. Come on, man, that is just this side of 'oh she's just another hysterical woman.' I never go back twice to any doctor who gives me ANY vibe like that. When I'm having a pain spike and the drugs don't help, I'm emotional....I'm this side of hysterical. It just is that way sometimes. In reading Vergie's posts to Tom, I responded in my heart to the pain & isolation she was experiencing. So I reached out to her and gave her my personal email address so she could have a friend who understands what she is going through safely and without negative comments. Someone named Tom was the voice of kindness during that thread. Poor Vergie was lost and in terrible pain. She didn't know the process and now she does. With a few clicks of her mouse, she will be able to find the Social Security website and learn what she needs to know. Once she reads up on it, maybe she won't be ready. Who knows? But when a person is ready, when the pain gets too bad and the drugs are making you useless on the job then perhaps the only recourse is to apply for SSD knowing that with appeals, etc., it can take two years or more. I'm just saying maybe have a little patience with a lady who hasn't been on this road as long as we have. She's scared. Pain panic. And I have been there and I know how she feels. You do, too, I bet.

The sad but true fact is that there is a social stigma about going 'on disability.' Every Tom, Dick and Harry has a story about somebody who is on disability for a hang nail or something. Now that I am going through the process I honestly do not see how that is possible but the rumor is out there and won't die. I believe it when you say the intent of your words on the subject were harmless and you had no bias against someone applying for SSD because of peripheral neuropathy. Your TTS surgery and Vergie's TTS surgery are two totally different animals. Can't compare. My neuropathy is marching through my limbs like Sherman thru Georgia. Docs don't know why. Perhaps it is due to my fibromyalgia.

I am beyond lucky and blessed that I worked for a very large organization with great benefits....including LTD insurance. I wonder what the others do - the ones without LTD. If they don't have a 2md income in the household, I guess they go on welfare or something. Heck of a thing.

We can over analyze this whole bru-ha-ha to death. Bottom line your words hurt another person. You did not mean to hurt her but you did. It's your perogative if you want to address that with Vergie. If I were you, I would. She's a really nice lady and worth having as a friend. But it's really all up to you.

(I apologize in advance for any bizarre typos--groggy from no sleep)

Result number: 12

Message Number 261146

years of foot pain View Thread
Posted by Jewel on 10/07/09 at 23:31

First let me say that I have some sort of autoimmune disease. I've been to many doctors and none of them agree. The latest being where 2 highly regarded rheumatologists took a look at my records and gave their determination and both completely contradicted each other. The possible diagnosises are RA, Undifferentiated Spondy, CPPD, Reiters/Reactive arthritis, Lupus and fibromyalgia. So, really who knows. I'm partial to the spondyloarthoapathies due to my foot problems.

I've gotten this foot pain on and off since 97. It has come and gone of it's own accord despite treatment. But now, I've had pain in feet constant for the last 5 years. Terrible, excrutiating pain that has now rendered me immobile. No, I wasn't overweight when it started, yes I am now. The one podiatrist I went to kept saying it was PF. I did the stretching, PT, night splints, injections, custom oththodics and none of it worked. He finally said he couldn't help me. Yes, I do have heel spurs - quite large ones. Floated between several other doctors, had EMG's = negative. Finally the one I have now has Dx'd a haglunds (doesn't hurt unless you press on it) and achillies insertion tendonitis. PT isn't really helping much.

The pain is in the back heel in a horse shoe shape - just along the edge of the foot. Yes it hurts when you squeeze the heel. In addition, there's a bone on the side of the foot by the tarsals on one side of the 'tuberosity' and according to the PT and Podiatrist it's where another tendon attaches and its super painful too. The achillies is sore in the ankle areas going up the ankle sides into the calf. The peroneous tendons (?) are very sore from the foot all the way up to the knee.

The ball of the R foot has issues. Podiatrist thought there was a neuroma between toes 2 & 3 as it was super painful too. He injected it there 3 times now (cortisone, over the past 1.5yrs) and it has helped. However, MRI showed no neuroma. Now toe 2 has very quickly deformed curving toward the big toe and hammering out. The last time I was at the podiatrist he mentioned capsulitis in that toe. So, could it really be the autoimmune arthritis and not a neuroma? I don't know whether to let him cut me open or not.

Went to an orthopedic doctor who specializes in feet/ankle. He said I have tendonitis all over my foot/feet. Took an xray of the R foot ball and you can see that the toe has hammered, said he couldn't do surgery due to the inflammation in the feet = too much scar tissue would develope in my current state. I asked him if he ever saw something like this before. He said 'just a couple times and that I need to tell my rheumatologist to get my inflammation under control.'

Result number: 13

Message Number 261110

Re: New Post OP From TTS Surgery View Thread
Posted by Dottie on 10/06/09 at 16:45

Welcome to the board! I've been thru nine years of trying to find a miracle cure for TTS/peripheral neuropathy. I was diagnosed with fibromyalgia less than a year ago when my multiple surgeries on both feet were unsuccessful....in fact, the surgery brought me new pains wherever incisions are.

Lyrica caused me to gain 30 lbs with a quickness. I am back on Neurontin which works better for me anyway. Also pain meds & a muscle relaxer.

My surgeon warned me that after surgery I might feel creepy crawly feelings from the nerves. Also sharp shooting pains up my leg were not unexpected.

I had three trips to the operating room with two different surgeons. Even though I was not a success story in the long run, I did feel relief for a few months before the pain returned in spades. There are several success stories here...people who were walking the next day, working shortly thereafter. As someone here says, usually the people here are the ones who are like me - still in pain and needing to reach out. If the surgery worked, those people are out living their lives again. They have much less reason to be here.

Every human being is different. What I went through is no indication of what you or anyone else will experience. My neuropathy is considered ideopathic which little hope of a 'cure' in sight. I can no longer work. But that absolutely does not mean any other person will have that outcome.

Good luck on your recovery!

Result number: 14

Message Number 261039

complicated..... View Thread
Posted by Jewel on 10/04/09 at 14:10

Hello Doctors!

Gosh am I glad I found you. First let me say that I have some sort of autoimmune disease. I've been to many doctors and none of them agree. The latest being where 2 highly regarded rheumatologists took a look at my records and gave their determination and both completely contradicted each other. The possible diagnosises are RA, Undifferentiated Spondy, CPPD, Reiters/Reactive arthritis, Lupus and fibromyalgia. So, really who knows. I'm partial to the spondyloarthoapathies due to my foot problems.

I've gotten this foot pain on and off since 97. It has come and gone of it's own accord despite treatment. But now, I've had pain in feet constant for the last 5 years. Terrible, excrutiating pain that has now rendered me immobile. No, I wasn't overweight when it started, yes I am now. The one podiatrist I went to kept saying it was PF. I did the stretching, PT, night splints, injections, custom oththodics and none of it worked. He finally said he couldn't help me. Yes, I do have heel spurs - quite large ones. Floated between several other doctors, had EMG's = negative. Finally the one I have now has Dx'd a haglunds (doesn't hurt unless you press on it) and achillies insertion tendonitis. PT isn't really helping much.

The pain is in the back heel in a horse shoe shape - just along the edge of the foot. Yes it hurts when you squeeze the heel. In addition, there's a bone on the side of the foot by the tarsals on one side of the 'tuberosity' and according to the PT and Podiatrist it's where another tendon attaches and its super painful too. The achillies is sore in the ankle areas going up the ankle sides into the calf. The peroneous tendons (?) are very sore from the foot all the way up to the knee.

The ball of the R foot has issues. Podiatrist thought there was a neuroma between toes 2 & 3 as it was super painful too. He injected it there 3 times now (cortisone, over the past 1.5yrs) and it has helped. However, MRI showed no neuroma. Now toe 2 has very quickly deformed curving toward the big toe and hammering out. The last time I was at the podiatrist he mentioned capsulitis in that toe. So, could it really be the autoimmune arthritis and not a neuroma? I don't know whether to let him cut me open or not.

Went to an orthopedic doctor who specializes in feet/ankle. He said I have tendonitis all over my foot/feet. Took an xray of the R foot ball and you can see that the toe has hammered, said he couldn't do surgery due to the inflammation in the feet = too much scar tissue would develope in my current state. I asked him if he ever saw something like this before. He said 'just a couple times and that I need to tell my rheumatologist to get my inflammation under control.'

I don't know what to do. I've lost my ability to walk. The wheelchair/scooter people came on Friday..... I'm hoping you can help.

Thank you,
Jewel

Result number: 15

Message Number 260936

Six years of on going foot pain View Thread
Posted by Shelley F. on 9/29/09 at 23:13

When my foot pain began I was 48. I really didn't think much about it. I went to my doctor and from time to time received cortizone shots. The pain however continued and got much worse. I did night splints, stretches, ice, heat and theraphy. Nothing could alleviate the pain. I'm a teacher and I'm not overweight, at least I wasn't then. We finally decided that I should try orthotripsy(spelling) because my now diagnosed PF was worsening. I had three shock treatments on consecutive Fridays. A company was brought in with this machine from Miami and an attendant not my doctor executed the treatments. I was to ice and heat and wait at least three weeks for a hopefully positive outcome. I was told the tissue and cartilage would be broken up and it would take time to grow back. That was over three years ago. My life has been turned upside down since then all because of excruciating every day, every minute, every second pain that has now traveled into the cuboid, ankle and shin areas in both of my legs. I have been to what I thought were the best doctors in my area but to no avail. One tells me it's fibromyalgia the next something else. Just recently I went to see a neurologist at Cleveland Clinic and he was dumbfounded as to why I was there. I told him I filled out the online application for an appointment and he was assigned to me. He then orders an EMG and said he didn't feel I ever had PF. Okay it is 11:59pm and I have to teach tomorrow. I was excited to find this website. I need some help! I've been on pain pills, patches and still I have no relief. I don't even know what doctor to go to anymore. The results from the EMG showed nothing abnormal. Now I'm beginning to have nightly ringing wet hot sweats(not menapause done already) and anxiety attacks from being in constant aching pain. Is it possible that the orhtotripsy damaged my nervous system. For instance something like RSD. I don't know. I feel like checking myself in somewhere and saying please find out what's wrong with me. I'm now 55 and have been teaching for 34 years.(please ignore mistakes exhausted) I'm so unhappy and I feel I've lost all quality of life. Please doctors help. Shelley F Wellington Fl.

Result number: 16

Message Number 260870

Re: TTS, post surgical pain View Thread
Posted by VB on 9/26/09 at 15:09

HI,Dottie I don't know but I think I might have fibromyalgia to I got to go to the Dr here in about 2 wks for refills I am going to talk to him about that. I got a question for you.I mentioned to my husband about me getting a wheelchair only for certain occasions like we have festivals going on in local towns right now and I wanted to go but I know I can't walk around so I wanted a wheelchair just for things like that but he is afraid that if I start using one that I will get until I can't walk at all I told I would not use it at home.He ask me a while ago if you had one told him I did not know we have a Daniel Boone festival here where I live on 10-10-09 we have a parade on that saturday in my younger days I was in those parades but anyway being I have being going to the Daniel boone festival's as long as I can remember. I went last year and never stay no time because my feet started literally killing me that is why

I thought about getting a wheelchair some of my family work in church booth's fire department booth's and so on and I want to go but my feet are so much worse than last year and there is no need in me going if I don't figer out something.I will probably fill stupid in it but it's the only way I can go.VB reply

Result number: 17

Message Number 260867

Re: TTS, post surgical pain View Thread
Posted by Dottie on 9/26/09 at 11:27

Wow, Vernie...sounds like you are suffering the curses of the damned! It sucks and I know exactly how you feel. That burning is the worst, isn't it? For a while after my surgeries, I did not have the burning but it came back as bad as ever. Actually, all the symptoms came back and the pain is progressing at a steady pace just like it was doing before my surgeries. Sometimes I wonder if just getting the damn things removed would be the only answer. But with my luck, I would get phantom pain syndrome. One of my grandfathers lost his arm in WWI and he had terrible pain in an arm that no longer existed. Nerves are tricky things, I guess.

After my first surgery (TTS and plantar fasciitis releases), I ended up with a mass of scar tissue in my arch. During the re-do of the left foot, the surgeon got all that scar tissue out. Still hurts.

I feel sometimes like an actor in a play. My role is to be cheerful, friendly and upbeat because nobody can see from my outside appearance that I am DYING inside from the pain. I sometimes want to scream and scream....then scream some more. But I don't. I smile and try to be the person I was ten years ago. The woman I was before the neuropathy made every waking moment torture. Heck, I dream that I am walking on glass or fire....I suppose because even in my sleep I am in pain.

I was reading your posts in the rocker shoe area. I bet all of us have a collection of 'failed shoes.' After I gave all my old work shoes to charity (all my pretty heels...sigh), I bought an assortment of 'Mary Janes' that I hoped would be suitable for work (I worked at a bank) or a night out with my fella. I never could get my orthotic to fit correctly in anything except my New Balance tennie, however.

I have been on this neuropathy roller coaster for almost ten years. As the pain progressed, I had to increase my meds. I used to be afraid and, well, even ashamed of being on pain meds. My primary care doctor always reassures me. I've been seeing him for nearly 20 years so he knows me totally. Pain medication was created to be used. If you are monitored regularly, are not taking more than what is prescribed, and not 'doctor shopping' to get more drugs, you are OK. There is a difference between getting a tolerance and being addicted. I read in one of the gossip rags that Nicole Richie took up to 50 Vicodin a day during her addiction. That tiny thing?!? Now THAT is addicted. That is having a dealer somewhere to hook you up with bags of the stuff. THAT IS NOT YOU AND ME. We are in pain and we are patients. My doc said 'if I can give you a needed medication that allows you to function, have some measure of relief and be able to take care of your daily activities, then I will do that for you.' I must see him every three months. After my terrible reactions to the various anti-depressants, I was left with a sleep disorder akin to narcolepsy. I became a person who couldn't sleep at night but would pass out suddenly in her soup! So all sedating medications became suspect. Doc tried to cut my Neurontin back to 1-600mg 3x a day. Over a period of several weeks my pain got to a point that I wanted to die. I am now back to 2-600mg Neurontin 3x a day...with the instruction that I can take more if necessary up to the max for me of nine pills during a 24 hour period. I take the pain pills up to four times a day. Rather than wait to be in misery, I just take the pain pill with the Neurontin at regular times every day. Yes, Neurontin makes you forgetful. But (here I go again) so does fibromyalgia. It is called 'fibro-fog.' The more I read your story, the more your story sounds like mine and the more I wonder if you possibly have fibromyalgia in addition to the rest.

This is the hand we were dealt and we don't have any choice but to make the best of it. Don't let anybody minimize how you feel. It is not just 'tired feet.' It is real and it is disabling. And anybody who says anything different does not have it like we do.

Hugs!!!!

Result number: 18

Message Number 260755

TTS - Ten Years Later & Learning Acceptance View Thread
Posted by Dottie on 9/22/09 at 10:51

I have been reading this site on and off since my first diagnosis nearly ten years ago. My journey started with intense insatiable itching. After that my feet burned so bad that I wrapped ice packs on them at night and had a portable fan blowing on them. Then the electric shocks, tingling, pins & needles pain began. The unmistakable signs of neuropathy.

Other than cryosurgery, I think I've done everything under the sun to try to get better. I've had multiple surgeries on my left foot and one on my right. I've tried all the medications medical science has to offer up to now. I even tried the non-traditional things like massage and acupuncture.

I am very glad so many people have had good results with their surgeries. They are voices of hope for sure. Actually, I was writing of success for some amount of time after my surgeries.

Unfortunately, the problem came back. But having an unsuccessful surgery (or surgeries) is not the end of the world. It happens with some of us. I think people considering having surgery need to understand that it might not work and to weigh their options carefully. It is good to be prepared emotionally. 'Hope for the best but prepare for the worst' is what my mom used to always say. My symptoms returned after several months and the neuropathy has returned to its progression of pain in my feet. Pain is the filthiest four letter word in the English language. Pain tries to take away your life and hold you hostage. Any activity causes me to be completely down after about an hour or two. So I can mow the lawn OR trim. Not both.

It is important to note that I was diagnosed after my surgeries with fibromyalgia. They believe that the fibro might be causing my neuropathy now and is the reason I have such severe post-surgical pain. Had I seen a rheumatologist FIRST, I might not have gone ahead with the surgeries. (Oh, another thing, I had several negative nerve conduction studies.) Anyway, if you are getting no relief from ANY treatments and nothing is helping your pain, it couldn't hurt to see a rheumatologist. If folks are like me, they are seeing a bunch of doctors anyway.

I guess this is a rambling post to say that sometimes the best doctors in the country or the miracle drugs of the century might not help you. Folks need to prepare themselves for whatever outcome they have and know that no matter what -- they will survive and they will get through it. I have gone from a TTS/PF surgical patient to a chronic pain patient with idiopathic bilateral peripheral neuropathy. If you, heaven forbid, also end up in chronic pain, fight for your rights. Find a doctor that specializes in pain management. You do not deserve to suffer! Have a strong support system of friends & family to keep your spirits up. If you don't already have one and are able, consider getting a dog and/or a cat. Pets make the pain so much easier to take! My Friend Cat was a furry nurse after my surgeries. And, most importantly, do NOT let anybody minimize your pain. People sometimes have this idea that our foot pain is like what they feel after a long day at the mall. They just don't know. I am almost militant in my desire to make sure the chronic pain community is respected.

I will get off the soapbox now but it is just that after reading so many anguished posts here it touched my heart. Here's praying that the medical community finds a CURE for neuropathy in our lifetimes!

-->PS My podiatrist gave me two final hopeful suggestions. I will pass them along. Both are very expensive, unfortunately. Metanx is the first thing. It is a super charged vitamin that evidently works in ways no other vitamin works. Doc said it takes six months to see if it helps. It is available only by prescription for some reason. The other thing was Zostrix triple strength cream. (Available at Walgreens for about twenty bucks a tube.) It also takes a few months of using 2-3 times a day to see if it works. Hope springs eternal and I will cough up the money to try these things.

Result number: 19

Message Number 260619

Re: Ah...the mystery of TTS, PF and Fibromyalgia View Thread
Posted by VB on 9/16/09 at 12:39

Hey don't worry about the goofed.From what you are telling me I may have the fibromyalgia to and I am going to name it to my family DR at my next appt.I have taken lyrica before DR #1 gave it to me wanted me to try it and stop the neurontin so had to be off the neurontin at least 5 days and then started the lyrica and after 2 weeks I call her and told her that the neurontin was better for me and it was so I went back on the neurontin I have been taking it at least 9 years started at 2 aday after surgery I went to 4 aday but I have never try patchs well I have the one's you buy over the counter but I am going to talk to my DR and try the patches others on this web site have mention them.ya know just been able to get on here and talk to someone who understands is a big help to me I need to go to a DR where I can set and complain and cry for 45 mins maybe I would feel better as it is I set and cry to my husband sometimes I get so mad I feel like I could explode.I set and just cry just about everyday because of the pain and because I just can't handle this good I guess no one could.I am lucky that I have 6 sister's yes 6 and when I think I am going to lose it I call one or the other and they will come and I will cry on their shoulder they may not understand TTS but they know I miserable.My shoulder and neck and arm is a lot better thank the lord dealing with my feet is bad enough but when something else starts it about more than I can handle and its all ways something got up this morning with feet and hand swollen.I guess I talk enough bye for now please reply.VB

Result number: 20

Message Number 260593

Re: Ah...the mystery of TTS, PF and Fibromyalgia View Thread
Posted by Dottie on 9/15/09 at 17:21

My name isn't actually 752....I goofed when posting the message above!

Result number: 21

Message Number 260592

Re: Ah...the mystery of TTS, PF and Fibromyalgia View Thread
Posted by 752 on 9/15/09 at 17:20

Back when my first foot issue started back in the mid 90's, I started feeling like I had a rock in my heel. Eventually, it made it really hard to walk so I saw my first podiatrist. I was diagnosed with plantar fasciitis, told to buy specific New Balance athletics and to do stretching exercises. It got better. In 2000, I had the craziest sensation in my feet. It was dead of winter in the cold Midwest and my feet itched so bad I couldn't take it. It kept up for days and then they began to burn, twitch and tingle. My brain flashed 'oh heck...nerve problems!' I went back to that first podiatrist, had a nerve conduction study and that one study (and out of the many I've had since then it was the only one) showed moderate nerve entrapment. I was prescribed Neurontin and fitted for my first pair of orthotics. Dr. Number One said that surgery should be my ultimate last resort. He was VERY conservative.

I've been in this crazy world of foot pain for a while now and have had conflicting opinions. One thing for sure. I had all the classic symptons of tarsal tunnel...to the letter. When I left Dr. #1 to find a surgeon about seven years into this saga, I had been through every treatment in the book. Dr. #2 went in surgically & found the nerve to be entrapped and released it. I let him do a PF release which was a BIG HUGE HORRIBLE mistake. I was worse than ever and I went to Dr. #3 - a young enthusiastic compassionate man. He went in & cleaned out the scar tissue in my arch and he found a muscle that was - when my foot was in a certain position - pushing on the nerve. Dr. #3 released it. He also did an Achilles tendon release because by this time I could barely push my left foot to a flat position. Four months later, Dr. #3 did a TTS release on my right foot. He found a varicose vein entrapped over my nerve.

I can assume from all this that I did indeed have TTS and the doctors did their best to release the nerve. But, just my luck, I have fibromyalgia to top it all. Fibromyalgia is a tricky sucker! It manifests itself in so many areas of the body. It can cause Irritable Bowel Syndrome (check), joint pain (check), unexplained body aches (check), blotchy skin (check) and neuropathy (check, check!).

The various docs have tried all the meds you can name on me. Cymbalta, Wellbutrin, Effexor, Luvox, Prestiq, Savella, Elavil, you name it....I've taken it. The SSRIs & SNRIs caused me to clench my jaws so badly that I ended up needing five grand worth of dental work for root canals. Then one of those teeth broke and I had to have it pulled. Wellbutrin caused me to hear voices and see things. Fun times! Elavil at bedtime helped for a while but after all the problems with the other anti-depressents, I began to have sleep disorders -- and eventually I had to be put on medication for narcolepsy. I no longer can take Elavil for night pain and I had to stop my Xanax for post traumatic stress disorder/panic disorder (from a car accident in 1990). My body could no longer tolerate them. To this day I still clench, have leg spasms, and have some involuntary facial movements. More fun times!

I tried Lyrica but I did not find it to be more helpful than Neurontin. Neurontin is cheaper. Plus Lyrica put 30 pounds on me in three weeks. I'm still fighting to get that weight off. Excess weight on bad joints is a bad thing.

There a couple of things you might ask your doctor if you can try. These things are non-narcotic and have given me some limited relief. And, as you well know, limited relief beats no relief!!! One item is a TENS unit. You can put it on the painful areas of your feet (not over surgical incisions) and let it run for a 1/2 hour on then a 1/2 hour off. I found that to be relaxing. Also, Lidoderm lidocaine patches 5% might be of some help. I put them on sometimes at bedtime. You can wear them for 12 hours.

I know the head shake very well. There is a sad look that comes across your doctor's face that says more than any words....'there is nothing more I can do....' I moved around to find the doctors I now have and I trust them completely. I know they are doing the best they can with a very difficult case.

I started seeing a 'mental health professional' -- a wonderful British therapist back in January. I can b*tch and moan about all my complaints for 45 minutes a week so I don't have to bug my boyfriend so much. I know some have their doubts on such therapy but I know it has helped me. The inability to walk without pain changes your life completely. You have lost your freedom and you must give up so many things you enjoy. I try not to feel sorry for myself but it can be hard. I think we have to find what works for us because at the end of the day...we MUST SURVIVE!


P.S. Do you find it interesting that so many of us also have post traumatic stress disorder and/or panic disorder?

Result number: 22

Message Number 260561

Re: Vernie - chronic pain is no joke! View Thread
Posted by VB on 9/14/09 at 14:43

Hey I am glad you did come back and I feel for you just reading what you wrote I could cry I am there I took medrol dose pack to try and help my feet they was literally killing me and burning like fire well the medrol dose pack help the burning BUT I am not sure I not a DR but I have tendinitis in left shoulder and 2 disc detereating in my neck and now my neck and shoulder and arm is killing me may not have nothing to do with medrol dose pack but they started the same day I started them I told my husband that I know he was sick of hearing about my feet but that was all I thought about because they are all the time killing me I am taking neurontin 4 aday and pain pills I am given 2 pain pills aday but only every took as much as 1 1/2 I did not want hook on them but I am to the point of who care's cause I can't live like this.It is sad when you have to take pain pills just to ease the pain they do not complently stop the pain they just ease it's not a good shape to be in.I am hurting all over.And that is how the Dr done me after my surgery is just stand and shake her head that is one of the reason I stop going to see her drive 2 hrs just to watch her shake her head my family DR started writing the neurontin and pain pills so I never went back and the foot DR I have now is just shaking his head to so I am now not working and found this web site and some people on the web site think I am a sorry person because I was in so much pain I could not take it any more and I quit my job well I am happy for them I really am but they need to count their blessing and not judge other people.If I knew that the medrol dose pack cause my neck and shoulder and arm to start killing me I would never take them again I help one thing and hurt another.I am glad you wrote back I hate that you are in so much pain like me I would not wish this on my worse enemy.I layed on a heat pad all morning and it has not help a bit.from what you are saying it's not going to get no better is it that is depressing.You would think that if they can do kidney tranplants and heart surgery's and liver tranplants they could figer out how to do a nerve transplant on our feet.But are you saying you don't have TTS.That your problem is fibromyalgia could you maybe have both or can fibromyalgia start in your feet.a nurse practionar told me about a year ago that she thought I had fibromyalgia she put me on Cymbalta try it and did not like the way it made me feel so stop taking it I was going to ask my family DR about it but I kelp forgeting to.does the neurontin make you forgetful them or pain pills one is making me forgetful.well at this moment I am misserable hurting all over.I will go for now please reply.VB

Result number: 23

Message Number 260552

Re: Tarsal Tunnel Syndrome View Thread
Posted by Dottie on 9/14/09 at 02:36

I know this is an old post but I most comment. I am so glad you had such a wonderful outcome. To even suggest, however, that what you experienced can be what anyone else can expect is overly optimistic. There is a section of the 'foot pain' community that did not have a good outcome from surgery. I was in and out of wheelchairs for weeks. Month after month I did not improve. I suffered the curses of the damned because the three surgeries made me much MUCH worse. The pain is beyond anything I can put into words. If it were not for the heavy drugs I must take every six hours, I might have lost my sanity completely. If the neuropathy does not improve from surgery, guess what? It gets worse. And worse. And worse. Retrained you say?!? Yeah, right. When you are either on the edge of sanity from pain or in a semi-drugged state from the high power meds, I don't think 'retraining' will do a bloody thing! I have been in increasing pain since 2000 from neuropathic pain in both feet and now in my hands. I also have fibromyalgia. I am becoming increasingly militant regarding the cause of those of us who have chronic pain and have to listen to those who act like we are trying to dupe the system or some such crud. You have NO IDEA of how we feel or you would not make such comments.

I've been on disability for a while and if anybody thinks this is 'fun' for me, they can go to you-know-where. I gave up a job I loved, a family of co-workers I respected, and a place that meant the world to my well-being. My income was cut in half. Giving up your working life with something that the doctors tell you will never improve is a terrible thing. But if a person must make that choice, then stop with the critical comments. Keep them to yourself! Going through the Social Security process is long, hard and a real pain in the neck but that service is there for a reason....for those who are disabled and cannot work. Chronic pain IS A DISABILITY! And we should not be ashamed! We should fight for our rights!

Sorry if I sound angry. I am. I am tired of the chronic pain community being misunderstood. No, I don't 'look sick'...that is until my feet give out and I fall to the floor in agony. I refuse to be judged by the ignorant and the misinformed!

Result number: 24

Message Number 260545

Re: Vernie - chronic pain is no joke! View Thread
Posted by Dottie on 9/13/09 at 15:50

Hello again! It was just a fluke the other night that I came back to Heel Spurs to see what was posted. I was a bit of a regular back at my first diagnosis and several years later after I decided to have the first TTS release. But with the continued struggle and the hard realization that -- for me -- the three trips to the operating room were of more harm than good, I decided to stop posting since I had no good news, no words of encouragement to give others at that doorway between surgery or no surgery.

I got angry at those who seemed to insinuate that those who apply for Social Security Disability are lazy or quitters. I had a two word answer for those who believe that. However, that specific two word answer is not for a public board and not one my mother would have considered 'lady like'!! As a person who has had to endure chronic unimaginable pain since late 2000, I can tell you that this problem is never going to be easy. In the early years I used to think 'my God...how can I stand to live like this.' Now I only WISH my pain were only as bad as it was back then.

I have fought with every beat of my heart to stay at work! I enjoyed working! It was a meaninful part of my life. To lose that part of my life was to lose a part of who I once was. I used to be able to be an executive assistant to people all over my part of the country. I knew where everyone was, what flights they took, who they were meeting with. Now I forget where I am going when I am driving.

Did I have the plantar fasciitis that was diagnosed in 1993? Well, I had all the symptoms. When that pain became pins & needles, electric shocks, a burning so severe that it required ice packs and a blowing fan...had it become tarsal tunnel syndrome? Well, again I had all the symptoms. I had two neurologists and three podiatrists over the years. It was only after I had endured it all up to and including surgeries that put me in a wheelchair for many weeks, that my current podiatrist said 'have you seen a rheumatologist?' When I did not heal properly...when every incision caused more pain than I had before, they began to think I had fibromyalgia. And they were right. I do. And it is progressing on a painful march through my body.

I cannot speak for anybody else but I can say this from my experience. If you have had the surgeries, had the treatments...done whatever was asked of you by your doctors, and your pain is getting progressively worse...see a rheumatologist (sorry if I am spelling it incorrectly). Fibromyalgia can mimic other disorders. I never in a million years would have suspected it in my case because I had so many classic TTS/PF symptoms. I seriously considered having a spinal implant to see if it would help my pain. Thank God my rheumatologist said 'Please no!' For me, it could have been a disaster. But when you are in so much pain, you are willing to do anything. Like I said before, I cannot take ANY of the medicines generally prescribed except a pain pill and Neurontin.

What can we do when there is nothing to be done? Even my doctors shake their heads and say we can only wait to see what advances are made in medical science. Until then, I wait...in terrific pain and unable to live the life I once enjoyed. And to think that someone could think anybody would WANT to live this way is beyond ignorant.

Result number: 25

Message Number 260479

Re: PF as an Autoimmune Disease/ Arthritis View Thread
Posted by Cee Gee on 9/10/09 at 12:50

I can't believe what i've just read. IT'S ME! I have been diagnosed with muscle spasms, neck pain, tendonitis, Raynaud's Syndrome, not to mention other stuff. I have had severe PF...cortisone..orthotics..night splint..physical therapy and even surgery. have it in both feet. it went away for sometime now and is back along with multiple other pains. right now im on celebrex 200 mg 2x a day and God help me if i miss one dose. I have spinal issues..and they 'THINK....fibromyalgia'. sometimes i feel like a chronic complainer. No, not sometimes...most of the time.

Result number: 26

Message Number 260451

Vernie - You are not alone! View Thread
Posted by Dottie on 9/09/09 at 10:43

I have been gone from this board for a long while and reading some of the messages here broke my heart.

I first passed thru the gates of Neuropathy Hell in 2000. I heard words I never heard before...ideopathic bilateral peripheral neuropathy. Later it was diagnosed as TTS. All three of the podiatrists I saw said that TTS does not always show up on a nerve conduction study. If there was a treatment 'out there' I tried it. Lotions, potions, pills, shots, nerve blocks in spine & tail bone, physical therapy, acupuncture, deep tissue massage, TENS unit, lidocaine patches...you get my drift. I finally had TTT/PF release on my left foot in fall 2007. It was a disaster. In early 2008 I had a new surgeon clean out the scar tissue and re-do the TTS. I had foot drop by this time so I needed Achilles tendon release as well. Last June I had TTS surgery on my right foot.

I cannot adequately describe in words what I have gone through. I fully understand how a poor soul who endures this constant horrific pain day in...day out might just give up. We are all different and for any one person to hurl a condescending comment (even if unintentional) toward a fellow sufferer's need for disability is cruel in the extreme. It's those thoughts and comments that keep the truly disabled feeling like they have done something wrong! The heck with that noise! I have a disabled rear view mirror tag. I admit I am ashamed to use it. I took a trip last month and my feet literally gave out on me and I ended up on a busy airport's floor. I was too humiliated to request a wheelchair from American Airlines. Most times my disability is invisible so others cannot tell immediately that something is wrong. I am in mental health therapy now to find ways to cope with constant agony. My therapist helps me accept my disability and teaches me to toss aside the 'guilt' over something out of my control. There are also various associations that assist those with chronic pain that you can Google such as the American Chronic Pain Association. Chronic pain is no joke!!!! It is real and it is disabling. To say otherwise is an insult to those of us who wonder every day if we can survive thought the pain. Nobody can know what another human being is feeling.

To those of you who have had fantastic relief from surgeries or other treatment, I applaud you. I would stand and cheer but my feet cannot hold me up right now. Point being, there are a certain percentage of us who have pain in extreme levels, unable to take the new drugs and perhaps have other medical issues in the mix. There is no blanket remedy for all of us. Making the choice to apply for disability is a tough one and a very personal one - I had to limp away from an almost 20 year career. More power to those who healed better than I did. But my surgeries were colossal failures. The surgeries made made the pain horribly worse. Every treatment failed. The side effects from the drugs almost killed me. One made me psychotic....I learned that the slide into madness can be so gradual that you don't even know it. Another class of drugs gave me involuntary clenching, spasms and symptoms of narcolepsy. I also sleep walked and sleep drove. I woke up one day in my car in the left turn of a busy intersection after a grocery shopping trip in my sleep! I still have many of those symptoms TO THIS DAY. I fell down a flight of steps while sleep walking and did something to my left hand which rendered it useless. A bone scan showed no break. I now have to take a narcolepsy drug morning and noon or else I pass out in my cereal bowl. For my personal body, most available 'ground breaking' drugs are toxic. I was ready to take a final bold step....a spinal cord stimulation implant.

I was referred to a rheumatologist. After all the surgeries and trauma, I found out I have fibromyalgia. Since fibromyalgia can create a myriad of symptoms for a patient, I found out that my neuropathy can be a symptom of that disorder. There is no surgery to correct the symptoms of fibromyalgia. An implant would not work. The neuropathy is now in my hands. As bad as the foot pain and inability to walk is, not being able to use a thumb without extreme pain is a real close second.

Good luck to you, Vergie. Ignore the haters. Do whatever is necessary to save your own life and your own well being. Find a doctor that understands the needs of the chronic pain patient. Like Tom said, a paper trail of medical records is a must. I've got a trail that started in 2000 and has more doctors than you can imagine. I can honestly say I've seen and done about everything under the sun. I had the good luck to work for a company that offered long term disability. They required that I file with Social Security which I did by telephone. I have a disability law firm working on my case. They get paid from the settlement if there is one. An attorney is a must....you can't fight this alone.

I know it is trite but I'll say it anyway...hang in there!

Result number: 27
Searching file 25

Message Number 259738

Re: My last straw---Can't take anymore(Dr.Z) View Thread
Posted by Ann on 8/15/09 at 23:30

On all counts,get this book: Treating and Beating Fibromyalgia aand Chronic Fatigue Syndrome by Dr. Rodger Murphee He has the best overview of What triggers symptoms, how to treat with the most practical effective advice. He will consult with you by phone too. Help is just A BOOK AWAY!

Result number: 28

Message Number 257977

I was diagnosed with Fibromyalgia but I think they got it all wrong View Thread
Posted by NW Trillium on 6/05/09 at 17:32

As a child in the late 1950's I had leg braces on both legs for I think it was a year, I am not sure for what. It is my understanding if you didn't walk perfect back then they slapped those things on you. The only reason I knew I had worn them is when I accidently came across a picture of me in a play pen with these big leg braces on. Everyone is dead now no one to ask what the reason for them was. As a young woman I wore high heels to work. Painful but I thought no more painful than for every other woman. In my late 30s I had gained weight and couldn't keep up with everyone and ended up going to see a podiatrist. They made up fiberglass arch supports. I lost weight and found it almost impossible to find shoes that would allow room for orthodics that didn't ruin the shoes and gradully I stopped using them. In my forties I started to have muscle problems all over, in my arms and everywhere. I slowed down and gained weight again over the years. The muscle issues got worse. I tried using the older orthodics but they didn't seem to help. Again they didn't fit into many shoes and ruined them. Also couldn't wear them in sandals around water. I was diagnosed with Fibromyalgia about two years ago in my early 50's. I also had problems sleeping from all the discomfort. The muscles got so tight that my big husband could lean into my muscles with his elbow full bore and I would find relief in that! I recently found sandals that are water resistant and for over pronation. Chaco Z1s I have been wearing them all the time for about a week. I am noticing that my pains all over have changed. They are loosening up and it is a painful process. I am wondering if I had Fibromyalgia at all. I have Kaiser Permanente and they don't cover the costs of having arch supports made. However they are very eager to put me on all sorts of pain killing drugs with all sorts of side affects. Kaiser only provides this group seminar on Fibromyalgia that is totally worthless. They have a doc there passing out a
bibliography of all the books etc you can buy and read about this condition. They have no specialists for you to see only primary care doctors are making these conclusions vs folks with arthritis get specialists. Their answer is pain management (drugs). I seriously wonder if Fibromyalgia is real. About 99.9% of these patients are women. The screening process for this condition is so general. How many older women have aches and tender spots in their knees, shoulders, necks etc. Tons. I am thinking that Fibromyalgia is really a painful reaction to orthopedic issues. It only makes sense if you are walking incorrectly it will affect the whole body in one way for the other. I am thinking that maybe lots of folks are getting misdiagnosed. I think it is cheaper for health care providers to pass out pills rather than send patients to specialists. I also think because it is not life threatening and it is primarily happening to women and women have a tendency like myself to go along with stuff that we are not getting the best care. In the seminar one woman pointed out that all of us were over weight. Some women were on some very serious medications and many on several. They also won't pay for massage and the physical therapy guy said they won't spend time chasing all your aches and pains. But clearly this helps coping with all the pain. I googled but couldn't find anything where anyone was made a connection with this. Are there any studies of children in the 1950 who had these braces how did it affect them in adulthood? Are my problems more than just arch support or is that only part of the equation? Should I be wearing some sort of leg support as well for some sort of orthopedic leg issue? I feel like a guinea pig for leg braces and Kaiser's cost cutting vodo medicine.

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Message Number 256679

Re: pain meds info needed View Thread
Posted by candyt on 4/06/09 at 20:03

I was diagnosed with fibromyalgia many years ago. I have many of the same foot symtoms you describe which started after I got off of Cybmalta recently. Does amitryptoline have serious side effects other than dry mouth? Cymbalta about killed me getting on and did kick me getting off. I am not willing to experience sexual dysfunction as I have been married only one year and it seems cymbalta, lyrica, and neurotenin have the same side effects, from what I have read. I don't want to waste another three months on something that has mega side effects. I am seeing the Dr. on the 7th and want to be prepared. Thanks for any help.

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Re: Intense Heel Pain View Thread
Posted by Sheri on 3/01/09 at 09:53

I work for a Urologist. No I have not been dx'd with Fibro previously, I feel I have Fibromyalgia due to the fact I have pain in some of the pressure points, such as low back, inside of elbows. However, only my back is the most painful. I have no urinary problems or kidney problems as I have been checked out by the Dr I work for to rule out any of those things. It is the heels of my feet that are truly my Achilles Tendon (no pun intended). I have had Gastric Bypass 4 yrs ago and was diabetic (no problems since and no meds since), so thought maybe I was having neuropathy given my past medical hx, but ruled that out since my A1C and glucose levels are really good.

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Re: Intense Heel Pain View Thread
Posted by Dr. Wedemeyer on 2/28/09 at 21:40

Sheri may I ask what type of doctor you work for?

He/she should be able to refer you out to a specialist and an orthopedic spinal doctor or physiatrist would be my first recommendations given your description of the pain, the intensity and the lack of success with orthoses.

No oral supplement can truly claim to reduce low back pain on its own.

Also why do you feel that you have fibromyalgia? Have you been diagnosed previously?

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Message Number 255524

Intense Heel Pain View Thread
Posted by Sheri on 2/28/09 at 17:48

I am a 46yr old female who is a nurse in a Dr's office. I am on my feet 8+ hrs a day. I have INTENSE stabbing and numbing in both my heels. I have been to the doctor and he won't address the issue. I have tried OTC inserts which have not helped. I am not sure if I have flat feet or not and am not sure how to tell. I also have low back pain due to what I feel is Fibromyalgia (dr refuses to treat). What OTC supplement would you suggest for the back pain? What can you suggest for my heel pain. I cannot stand this for much longer.

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Message Number 254421

Thermotex Infrared Heating Pad View Thread
Posted by BrianG on 1/27/09 at 12:39

Hi all,

It's been quite awhile since the Thermotex Infrared Heating Pad has been discussed, and then it was just a few short posts. My local newspaper just ran a full page ad, from BioTech Research, in Canton, OH, pushing this heating pad for 'only' $297 if ordered within 10 days. If you miss that date, the price jumps to $404. This is a link to the actual ad:

http://atol.lsj.com/pdfs/0010425851.PDF

The ad claims that the 'device' has been cleard by the FDA for public use. It goes on to list a group of injuries that the pad can help the body to repair damaged tissue. The list is quite long, and jumps from fibromyalgia, to constipation, to TMJ, to PF, etc. Oh yes, it's also safe for any pets.

You know these full page ads are not cheap. People must be buying them. I'm just wondering if anyone has any 1st hand knowledge of this product???

Thanks in advance
BrianG

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Message Number 253622

Re: bilateral TTS? View Thread
Posted by Cookie on 1/01/09 at 13:00

I have the same problem and I take neurontin (300mg) twice a day, try to always keep my feet warm, and have been fitted for accomodative orthotics. I am better than I was when I had symptoms more like you describe. My doctor thinks I have 'fibromyalgia'.

I also had bi-lateral neuroma surgery but the 'neuroma' they found was nearly nonexistent and I think it was an unnecessary surgery. They also think I have plantar fasciitis and tarsal tunnel.

The whole thing is one big annoyance in your life.

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Message Number 253464

Re: hot feet & legs View Thread
Posted by Lillian M on 12/24/08 at 11:38

I would be greatful for any info u can give me I don't know what to do or what kind of Dr I should see I went to internal DR & My Rheumatologist I have Fibromyalgia they don't know what it is I have been on elevil at night & Prozac in morning for 35 years could it be from the meds I take for my fibro???? hope u can tell me something thanku L M

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Message Number 250830

Re: painful knot in arch of foot View Thread
Posted by Rainy S. on 10/05/08 at 05:15

I have fibromyalgia, but have no idea whether the knots I get in the arches of my feet are related. The knots are 1/2 inch high and the size of a quarter. They are located 2/3 of the way back from the metatarsal. Luckily, it has been one foot and then the other, so I have been able to limp along. Accupressure helps, but nothing really releives the pain except staying off my feet. Please help.

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Message Number 250365

Re: Lyrica/Tarsal Tunnel View Thread
Posted by KarenD on 9/20/08 at 19:46

I have been on Lyrica for 4 months. At first it made me feel strange but that gradually passed. It is the only thing that has helped me cope with continued nerve pain while walking/staffing following tarsal tunnel surgery 13 months ago. It has also dramatically helped my fibromyalgia. I take 100 mg in the morning and 200 mg at bedtime. The only side effect I don't like is weight gain. Good luck to you and hope you find something to help take the edge off your pain.

Result number: 38
Searching file 24

Message Number 249283

Ultrasound for big toe pain? (And other questions) View Thread
Posted by simon b on 8/15/08 at 10:45

Hi Doctors,

I’ve had big toe pain for about 3 months. My major question is whether diagnostic ultrasound can help to diagnose my condition but any other suggestions would be very welcome as well. Here are the details:

About 3 months ago I was walking without shoes in my house (a rare occurrence) and my left big toe got bent upwards (dorsiflexed) – not really far, but something my toe was not used to (I’ve had leg problems for years and they’ve greatly limited my activity). The top of my toe then briefly hurt somewhat. About a month later, due to other leg problems (e.g. calf tightness and some shin and pain), I started walking in running shoes with thick socks, and the top of the big toe then started regularly hurting, especially when walking on semi-hard or hard surfaces. (The pain seemed to be about halfway between the MTP joint and the IP joint, but it’s really hard to tell.) I briefly tried the orthotics that a biomechanical expert podiatrist made to treat hallux valgus (as well as other orthotics), and they made my feet feel worse, especially the top of the left big toe, so I stopped using them. (I now use extra-wide Brooks Beast running shoes -- which have somewhat of a rocker bottom and don't allow too much bending upward -- with Spenco Cross Trainer insoles and moderately thick socks; less bad than the other options. I've tried just about every shoe in creation.)

A couple of medical professionals told me I had hallux limitus.

An MRI taken two months ago showed no problem at all (per both radiologist and orthopedist); the MRI process actually made things worse since my toe was bent back (I didn’t know that it didn’t have to be bent back, and the technician didn’t tell me).

A respected orthopedist bent my toe upward and said that the range of motion was decent – no hallux limitus (my physical therapist concurred) – but that the tendons on the top of the feet were very tight and that my toes didn’t bend downward well. He said I should stretch the tendons on the top of the foot while bending the toes downward, and get massage for the top of the foot too. I tried bending up and down and it made the top of the left big toe hurt more (and still does make it hurt more anytime I try it, and the additional pain lasts for a few days). My physical therapist (who has helped my calves and shins) has also massaged both the top and bottom of the foot, and has worked on the extensor big toe tendon, especially the distal attachment which hurts a lot; he also has mobilized the toe. The foot work he has done has made things worse (I’ve stopped for now); now the top of the big toe sometimes hurts even when I’m standing, and when I do heel-to-toe walking it then hurts for days. Sometimes the bottom of the MTP joint bothers me as well. Also, now I often hear and feel a cracking when I walk with even a bit of heel-to-toe motion. Also, when sitting with my legs dangling I feel some discomfort. Even the pressure of breaking the wate during gentle swimming hurt the top of my big toe. Pressing, even lightly, on various parts of the big toe hurts. If I walk differently, other metatarsals and other toes sometimes hurt a little.) Many of these same symptoms exist on my right big toe too, but to a much lesser extent. (Two other things that aggravated my left big toe: my flip flops twisted my toe and now even the slightest pushing outward of the toe hurts; and I walked on relatively hard, uneven sand for exactly one minute and that made bottom and top hurt more.) For the past 5 days I’ve been walking slowly – and not very much – mainly on soft surfaces, and it hasn’t bothered me much, but this morning with slightly faster walking it has started bothering me again.

All podiatrists / orthopedists say there’s nothing more they can do, especially since the MRI is clean. (One said “pain is subjective”. But the fact that the left big toe hurts much more that anything else, and especially when I’m walking, leads me to believe that the mental component is not a major factor here.)

I take Advil at night but not during the day. I actually don’t mind pain much, and if something hurts I want to know it so I can modify what I’m doing.

I suspect that a new MRI might possibly show new problems, due to the worsening over the last 2 months.

So some questions: Might diagnostic ultrasound show any (new?) inflammation / arthritis (top and/or bottom of MTP and/or IP joints)? (And does the quality of the ultrasound machine matter?) Should I get a 2nd MRI (no precert is required) if I can find a doc to prescribe it? Even if something shows up, is there anything to do?
(Non-weight bearing for weeks? Probably makes everything tighter, plus my arms are weak (fibromyalgia etc) so I couldn’t use crutches.
Surgery? My feet heal very slowly (I’m thin – no diabetes – foot circulation is somewhat poor but nothing treatbable.)
Very stiff soles (maybe on custom shoes -- I need a very wide toe box)? Possibly, but hardness of sole could well be a problem even with a fair amount of padding.
Exercises? Makes things worse as I mentioned.

Any thoughts would be greatly appreciated.

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Message Number 249169

Re: pain:Mark F. View Thread
Posted by Nancy on 8/12/08 at 16:50

Thanks Mark, that really makes a lot of sense. No doctor has been able to determine what causes that redness on the soles of my feet - I have had all sorts of explanations - - fibromyalgia, RSD, raynaud's syndrome to name a few; I've been prescribed blood pressure medicine, neurontin, etc.for my red feet! I have also had circulation and nerve conduction studies which were all normal.

I was beginning to think it was in my head - but I knew it wasn't. I do use the ibuprofen cream every day and find it helps - icing my feet actually make it worse but in that way, I can't treat me PF with icing. I found some 20% ibuprofen on Amazon.

I wonder what one can do to break up the scar tissue? I find anything but the most gentle message also aggravates my PF. But, you say the shockwave didn't really break up your scar tissue? Will it ever go away? Makes me wonder about the ionophorisis - sorry spelling...

I have a good sports medicine doctor now in LA who has talked to me about shockwave at his facility. I need to learn more about it. Did you go to Canada because it was less expensive? How did you find that particular doctor you mention in your post and how many treatments and days did you need? Thank you for all your input.

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Message Number 248848

Re: chronic plantar fasciitis View Thread
Posted by Jennym on 8/02/08 at 13:54

Hi--My aunt has fibromyalgia and neuropathy in her feet--her doctor has told her that the foot pain is associated w/the fibromyalgia. I struggle w/plantar fascitis as well, having tried all of the treatments you mention. I have found that athletic tape over and aroudn the arches--you can find it at a pharmacy, does help support and ease pain and of course, shoe choice and rest and ice and meds are crucial. I am considering accupuncture.

Good Luck

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Message Number 248678

Re: chronic plantar fasciitis View Thread
Posted by shannon k. on 7/24/08 at 12:30

I currently take Lyrica for Fibromyalgia but it doesn't address the pain in my feet at all. I can't imagine taking long walks again. On vacations, I usually get a wheelchair if it involves a lot of walking. I hate it. I exercise by doing Pilates and Yoga and try to stay healthy and fit and would love to be able to go on walks again. What kind of doctor prescribed your meds for your feet? A podiatrist?

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Message Number 248666

Re: chronic plantar fasciitis View Thread
Posted by shannon k. on 7/24/08 at 09:41

I have had MRIs that showed no damage. I have had Nerve Conduction studies that showed no neuropathy. I have seen approximately 7 different doctors from podiatrists, orthopedic sports doctors and am currently seeing a rheumatologist for Fibromyalgia diagnosed a year ago and told him about my feet pain. He didn't seem to think the two were related nor did he offer any suggestions for further investigation or treatment of the feet. I tried Neurontin for the foot pain and it didn't help. I currently take Lyrica for my hip pain associated with Fibromyalgia but it does nothing for my feet. I have had blood tests to rule out diabetes and my Rheumatologist does routine blood work every 4 months. I haven't seen a doctor for my feet in over 2 years because I am not sure where to turn. Any other suggestions?

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Message Number 248249

LED light therapy anecdotes View Thread
Posted by scott r on 7/06/08 at 09:08

Tested at family gathering this July 4th: fibromyalgia pain in overweight pale white woman (Has anyone else notice this to be a very common description in FM?). Pain level in forarms: 8 in one, 5 in the other. 5 minute treatment with non-sellable prototype resulted in pain levels of 2 and 0. Second person, torn rotator cuff scheduled for surgery: 8 to zero in 10 minutes (120 J/cm^2). Myself: landed on base of palm (the large thumb muscle) while mountain boarding with elbow locked to use hand to break fall. Caused a lot of pain in wrist, somewhat concerning. Luckily swelling took 6 hours to show indicating not too serious. Required 30 minutes 3 times a day of light therapy to keep pain from a 7 to a 2. It was 360 J/cm^2 per session. Swelling no longer visible on 2nd day. Seperately used ice, compression, and DMSO/aspirin/resveratrol mixture topically. Light appeared to not affect bruised feeling as much as more internal pains.

Since the wrist injury was not nearly as deep as the shoulder injury, it makes me wonder if the shoulder can benefit if it's used for longer than just pain elimination. Generally professional athletes and physical therapists are not using LED light therapy in as high doses as i seem to enjoy. For serious injuries, 300 J/cm^2 3 times a day seems to be best. For skin injuries, only 4 J/cm^2/day should be used.

Although I've repeatedly claimed shoulder and knee injuries are just too deep to see any benefit, experience has shown these to get the most remarkable results, partially because they begin with such bad pain and lifestyle alteration.

For the most detailed and remarkable research on LED light therapy going back to the 1980's, see the well-written journal articles by the best and most famous researcher (Russian Tiina Karu, Ph.D in Moscow)

http://www.isan.troitsk.ru/dls/publ

'NASA' ets all the headlines now, but the 2005 NASA work is childish compared to her work back in 1987. But as she points out, light therapy has gone in and out of fashion forever, having several resurgences in the 1900's.

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Lyrica View Thread
Posted by john h on 6/11/08 at 12:05

Have any of you tried Lyrica for plantar fasciitis? That would be off label but many Doctors are using this medication off label for such things as back pain or anything to do with nerve pain. It appears to have relatively few side effects and can be taken with or without food. Ask your Doctor about this? It was designed and approved by the FDA for such things as Shingles and Fibromyalgia (nerve pain).

I have been on it for about three weeks and it appears to be helping my PF. Will keep you appraised.

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Message Number 247282

update on astym-cymbalta-newbalance View Thread
Posted by theresa g on 6/03/08 at 00:24

For anyone who is interested....after undertaking 12 treatments of ASTYM, along with physical therapy for metatarsalgia that seems to be linked to excessively tight Achilles tendons bilaterally (dorsiflexion about 3-7 degrees), it seemed a bit better. But since I was still struggling with pain, I kept returning to the orthopedic surgeon. He told me the last time I was in that my case was puzzling (always a way to brighten your day when you hurt all the time) and that he wanted to try me on a round of cymbalta. I was skeptical, but agreed to do it, since there is scant evidence that it can help chronic pain from fibromyalgia. Desperate times....well,you know the saying.... After a week, I was amazed that it does help!

About 3 weeks before starting cymbalta, I got a new pair of New Balance shoes. This time, I went in and told them I wanted the most cushioned pair that would fit me and my orthotics. I ended up with 1062s. Not bad!

A month into this drug trial, I'm hoping that it keeps working. I've been able to manage most days on just aspirin for aches and pains. My feet rarely hurt. From what I understand, the cymbalta acts on the neurotransmitters norepinephrine and serotonin, levels of which have become awry from chronic pain. However it works, it works for me.

I would say that the ASTYM was beneficial, the stretching was good, in that I gained a little bit of dorsiflexion. The orthotics have helped, the shoes helped. But I am amazed at how much the cymbalta has helped. If it's a placebo effect, that's fine with me. Only side effect has been a bit of a headache and some occasional urinary weirdness. Not enough to stop taking it. And, I'm not sure how long I have to take it or how long this will work. Time will tell, as it does with most treatments.

Anyway, that was a semi-brief update.

If you are new, I've had release on both feet, one in 2002 and the other in 2005. I broke 4 bones in the left foot in 2004. Pain had returned and was causing a lot of problems with walking/standing.

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Message Number 246462

Re: cymbalta for joint/muscle pain View Thread
Posted by Dr. DSW on 5/01/08 at 07:54

I'm wondering if he is confusing it with Lyrica which is often used for nerve pain similar to Cymbalta, but has recently been FDA approved for fibromyalgia, which causes aches/pains in the muscles/joints.

Lyrica is FDA approved and would not be an 'off-label' use IF fibromyalgia is the diagnosis. I personally have not used Cymbalta for the indication your doctor mentions, but it may have worked for him in the past.

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Message Number 246101

Re: Plantar Fibroma, fibromyalgia and cryosurgery View Thread
Posted by dr g on 4/19/08 at 18:16

Cryo does work pretty well for fibroma especially combined with a cortisone 'flush' which will help control the post op inflammation. I don't know if there is anyone doing cryo in your area but Hyaluronidase injxns also work very well, especially combined with cortisone.Many doctors do these.

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Message Number 246094

Plantar Fibroma, fibromyalgia and cryosurgery View Thread
Posted by Sharon M on 4/19/08 at 13:35

After putting it off until my discomfort became really obvious to me, I finally received an official diagnosis of a plantar fibroma on my left foot. There also appears to be the beginning of one on the bottom of my right foot. 7 years ago I had bunion surgery on my right toe. My left foot mirrored the pain I had in recovery. Crazy.

I have fibromyalgia and burning and tingling in my legs and feet nearly all the time which try to ignore for the most part. My foot dr gave me a night boot to try (I can wear it most of the night until my foot starts to ache and cramp), showed me stretches, suggested cortisone shots next and then full surgery if that didn't work. She does not believe in cryo surgery for this. From what I've read, surgery would definitely not work for me (I've never really gotten my fibromyalgia back under control since the bunion surgery), and the shots are pretty much a waste of time too. I imagine, since they are also invasive, I would not react well to them.

Any luck with cryo surgery on FM patients? Would you recommend I wait to see if it gets bigger or try fixing it when it's fairly small? Is there a dr. who does cryo surgery for this in the Orlando FL area?

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Message Number 244604

Re: Plantar Fibromas preceded my multiple growths in body. View Thread
Posted by cindyh on 3/15/08 at 16:58

Dr. Wedemeyer, Thanks for the quick response. No I have seen over 15 Drs. in the past 3 years, Rheumatologists, Family Drs., Orthopedists, Cardiologists, Electrocardiologists, Pain Management Specialists, Psychotherapists, Neurologists, Gastroenterologists, and on and on. I think they just each take a look at my problem associated with their specialty and never look any further than that. I just switched Drs. on Jan 1 because of insurance change and he is the one who found the hypothyroidism. He had an ultrasound and thyroid uptake scan done on me after the Gastroenterologist said he saw a 1cm nodule on my thyroid. This was just looked over until I got my records and took them to my new Dr. and he followed up. My gastro was trying to find something that was causing me to choke. I guess he didn't think much of this but my new Dr. luckily did! Rheumotologists have checked for Lupus and RA. Everyone just keeps saying they don't see anything other than Fibromyalgia and of course all my other problems. Nothing to show the correlation between all of them. I just feel like it has to all be related. I have never been to a Dr. more than a couple of times a year until about 5 yrs. ago when I started having Kidney problems with blood and protein in urine and kidney stones. It just keeps getting worse. Who would I see and how can I present it as a possiblity without them acting like I am a google freak or a hypochondriac which I have felt like some of them have thought I was until they actually found something wrong with me everytime? Again thank you so much for your help!

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Message Number 244590

Plantar Fibromas preceded my multiple growths in body. View Thread
Posted by cindyh on 3/15/08 at 09:42

Hi, I am on several meds and the Duragesic patch 50 mcg for following (all in last 3 yrs):I am a 47 yr old. female with osteoarthritis (grade 4) in both knees. DDD on total spine. Fibromyalgia, hypothryroidism, depression and anxiety. I have had 8 surgeries in the past 2 1/2yrs. Both knees(need TKR's but they say I am too young and want to try to wait for another 5 yrs if possible). Gallbladder removal (15 gallstones). Heart ablation (SVT with multiple extra cells removed which were causing heart rate of 215). Carpal tunnel on right hand. Neck fusion with cadaver bone (DDD causing nerve compression in arms and hands). Lumbar surgery for DDD and Surgical implant of Spinal chord stimulator for pinched nerves. Finally discovered enlarged thyroid with multiple noncystic nodules on both sides (causing choking and multiple symptoms.)Breast tumor removed(benign fibroma). Have had 3 polyps, Kidney stones, 15 gallstones, 5 Eyelid chalazeons, Multiple breast fibroids(both), nodules on lungs, multiple nodules on thyroid, and breast tumor. Now I have multiple knots on my plantar fascias (both feet)Have struggled with plantar fasciitis for years preceding fibromas. What is wrong with me????Is there a disease which causes your body to produce so many nodules, cysts, fibromas, tumors, stones, etc.?

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Message Number 243097

Re: needing orthodic advice also! View Thread
Posted by Alice G on 2/11/08 at 22:04

You mentioned fibromyalgia. That is usually helped by exercise. Unfortunately most forms of exercise involve being on your feet. :-)

You might want to try deep water running as exercise (actually I'd recommend it to any PF sufferers). Heat up in the hot tub first. Do a little bit of stretching, but nothing that yanks the fascia on the bottom of your foot (spoken from experience).

Then put on a flotation belt, go into any water over 6 feet or so (don't try this if you don't know how to swim) and start jogging, doing a stair climber routine, bicycling both arms and legs, cross country skiing, jumping jacks, rowing motions, etc. I've had better results with this than swimming. I'm a lousy swimmer, and the motions of swimming tend to be repetitive use of muscles exerted in one direction.

You'd be surprised how good a workout you can get. However, I'm going to start bringing along a heart rate monitor wrist watch so I can figure out if I'm going to get a heart attack from the exercise. :-)

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Message Number 242280

Re: needing orthodic advice also! View Thread
Posted by F.S. on 1/22/08 at 18:46

Jeremy and Dr. W.
Thank so so very much for your time. When all this began for me, back in 99, my rheumatologist ruled out lupus, R. arthritis, Lyme disease. I think that is what you are referring to by underlying pathology. I had a pretty good work up. I was diagnosed with fibromyalgia at that time since nothing else showed up. Spinal issues have never been looked at.

I did have the nerve conduction test on my legs and feet back in 99 also. This showed TTS severly in right foot. I went right into surgery and the ortho. surgeon (very top notch in Chicago) said there was varicose vein compressing the nerve. I have never really been the same since then, although I can get thru the first half of the day with no foot pain. Second half is not so great. Before it was 24/7.

I go thru periods of thinking I should tackle this again and then I get tired. No way would I repeat the surgery. That is what the orthos will recommend -( Repeat the surgery) and that would be very hard for me to get thru. I am 55 and in good health but had a tough time recovering from the first release. I COULD get PT all year if I want.

Would you recommend I go back to PT for the ultrasound etc. I tried ART last fall. He was into just pulling my leg in all sorts of different directions 'flossing' the nerve he explained. It was interesting but the pain relief did not last. No massage to speak of.

Graston I have not tried. What is that?

If I were in your family or your patient, what would you or Jeremy recommend I do from here. I do not work, so can hit the trail again in terms of seeing drs. HOWEVER, I feel skeptical that I will learn anything new.

So, my questions would be are there any underlying pathologies I have not been checked for. Oh, my thryoid is good too. My back feel fine: should I see a physiatrist for that?

I have a rather sensitive make-up so I need to be careful with most treatments/surgery. THANK YOU SO MUCH!!!!!! ALL OF YOU ARE SAINTS!!

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Message Number 242194

Revisit to my original surgical choice - Monday View Thread
Posted by Dottie on 1/19/08 at 21:55

OK...my friends, I'm about to rant. I get up on my soapbox now and then and go off. For me it's probably a good thing because it means I'm ready to start fighting for myself again.

Don't get me wrong. Dr. Optimistic had me weight bearng in a couple days, out of the boot & into a New Balance tennie in ten days or so. He said I didn't need a walker or a crutch & he was wrong about that that but....Dr. Optimistic is like that. He never heard me when I said I was in pain. He said try Advil. Ha Ha. I've been on Vic/Neurontin 4/5 times a dang day for about six years now, Sonata for about three and now (because I cannot take Cymbalta or other similar anti-depres meds) Xanax for about two months. Doctor O did finally hear me last visit when I said EVERY sympton of TTS is back in my left foot. That's when he mentioned the last ditch ablation (sp?) of the nerve.

I don't want to live like this. So I am returning to Dr. Understanding who I finally found after searching the local websites on who has moved where in the medical community. Dr. Understanding really seemed to listen to me last year about this time. He gave me his personal cell phone number for pity's sake....what doc these days does that? I don't know what I'm going to do. I want to see about getting that nerve cut/frozen/ chemically whatevered -- see what Dr. Understanding has to say about his thoughts on that procedure. I am going to ask how he feels about the Dellon method (my insurance won't cover them, I have now learned) but I do know many surgeons use those same techniques. I plan on (barring some accident) on being on this earth about maybe 30 more years, maybe more....even if it were just ten more....I don't want to live them in agony.

I read a newsletter from one of the pain advocacy groups that there has been much controversial media coverage on fibromyalgia and chronic pain. The New York Times published an article, Drug Approved. Is Disease Real?, which questioned the validity of fibromyalgia and chronic pain itself. The article suggested that the pain of fibromyalgia is a case of people who “obsess over aches that other people simply tolerate,” and that the pain is just a “physical response to stress, depression, and economic and social anxiety.” This is an extreme and harmful mischaracterization of the reality of pain.

It reminded me when I was in the throes (sp?) of a terrible migraine (before all the 'triptans' were on the market that nip them in the bud at the first sign of the aura) and my sister said 'Oh stop being such a baby, just don't think about it.'

You know, I want to get better so I can get my strength back to fight for our rights! I get so angry at society's ignornance of how chronic pain destroys lives....takes the joy away....takes our personalities away. Maybe I won't be matching on Washington...maybe I'll be in a chair wheeling on Washington but living in pain is NOT normal. And (excuse my semi-language here) EFF those *ssh*les who think we are just whiners who complain about what others just deal with. Oh please if only they could walk in any one of our orthotics or our casts or New Balances for a day. If only.... And having the government make our doctors feel like criminals for trying to ease our suffering with medication makes me so angry I cannot expresss it in words approproriate for public viewing. I think if it were not for my anger, maybe I'd give up. My dear momma believed I was her sickly child - so many health problems since birth, her weak one....I tell you what, my dears, I may be in pain but I ain't dead, and I'm still ready to fight. My body ain't strong but my soul and my brain still works. They can fight men's baldness. They can make sure men can 'perform' in the bedroom. How many more women in this country suffer from chronic pain? ARGH! Maybe if we ladies didn't have chronic pain every waking moment, we would actually want to be intimate with our frisky men with their new hair and little blue pills.

For those who are interested, here is the link to the organization. Sometimes just knowing there are those out there fighting for us, fighting for our rights, just knowing we are not alone, helps.

http://www.painfoundation.org/

Here's praying for peace, relaxation, joy and a good night's sleep to all of us who just want to remember what 'normal' is again.

Sorry to be so radical. Sometimes I can't help it. Pain does that to you, huh? Love you all!

Result number: 54

Message Number 241817

Re: TTS inccesion View Thread
Posted by Queen on 1/10/08 at 22:26

Hi sorry it took so long to respond. I was off work for 6 weeks and now even though I'm back to work I hide the pain to be able to continue working. Iam getting PT now and that is helping some. My doc wants me to have my other foot done in the spring. There is no way I can go through this again. I fight with cronic pain from fibromyalgia, and IBS and Bi polar. I dont need this again. I live in the Willamette Valley in Oregon. Good luck to all of you out there dealing with this; people dont relize how much we go through and when this surgery works well for someone they should consider themselves blessed. Good luck to all.

Result number: 55

Message Number 241472

Re: Lyrica View Thread
Posted by Lakemom on 1/02/08 at 20:42

Norm, since you are in Baltimore you might be interested in seeing a Dr. Jacob Teitelbaum who is a chronic pain/fibromyalgia doctor and experienced with traditional and alternative ways to control pain.
He wrote the book Pain free 1 2 3
http://www.amazon.com/Pain-Free-1-2-3-Jacob-Teitelbaum/dp/0071464573

Result number: 56

Message Number 241187

Re: Lyrica View Thread
Posted by Dr. DSW on 12/23/07 at 17:58

Actually, now that Lyrica has FDA approval for fibromyalgia, it's no longer an 'off-label' use. Interestingly, it wasn't long ago that many doctors believed that fibromyalgia wasn't truly a real entity. There were many doctors that simply used fibromyalgia as a diagnosis of exclusion. Fortunately, the rheumatologists led the way and set the parameters and helped legitimize this condition.

Result number: 57

Message Number 241067

Re: Lyrica View Thread
Posted by Dr. Ed on 12/19/07 at 18:22

Dr. W:

Yes but I attended a lecture by a local rheumatologist on use of Lyrica in fibromyalgia last week with dinner served by Pfizer. The food was good.

Dr. Ed

Result number: 58

Message Number 241050

Re: Lyrica View Thread
Posted by Dr. DSW on 12/19/07 at 11:26

Interestingly, Lyrica does now have FDA approval for the pain associated with fibromyalgia.

Result number: 59

Message Number 240339

Re: 5 weeks post op- no change View Thread
Posted by KarenD on 12/06/07 at 16:51

I had my TTS surgery on my rt foot on 7/20/07. First 3 weeks were great because I wasn't doing any walking except to couch or chair to bedroom/bathroom. Once I went back to work still on a walker for a week, then a cane for a couple weeks, and was on it more my foot started tingling/burning worse than before surgery. Pod said that was a good sign. At my 3 month post-op visit, I begged for drugs which I hate to take. I'm now on low dose of Neurontin and Cymbalta. Foot is much better most days although I still can't do a lot of walking or standing without increase in pain. It is finally starting to feel better now than before surgery, so I'm glad I had it done. A plus is that I have not had any fibromyalgia pain in a couple months probably due to meds. Like everyone else on this board, it takes time and healing can't be rushed. Pod keeps telling me it can take up to a year or longer for nerves to regenerate.

Do you think Ebay sells new feet??!! Best of luck to you and hope you feel better real soon.

Result number: 60

Message Number 240155

Re: Dr.Kiper's SDO's View Thread
Posted by larrym on 12/02/07 at 20:13

Treadmills View Thread
Posted by sandy g on 9/03/06 at 12:57

Hi ....I have fibromyalgia and my feet finally recovered by the trauma caused by hard orthotics.(i now wear Dr. Kipers SDO's). This Summer, for 3 months i had been walking outside, between 3-4 miles. Most of the distance is relatively flat but i would say that about 1/4 to 1/3 distance is hills. I finish the this distance in one hours...sometimes a bit less...but never more.

The other day, it was raining, did not feel like going to the gym..so i decided to use my Proform treadmill. After about 5 minutes at 3mph i slowly increased my speed to 4mph. Most of my walking was flat, i did increase the incline slightly for about 10 min.

During my 3rd mile i started to feel some arch discomfort on inside right foot near the tarsal tunnel area....the discomfort would come and go. I finished 3 miles (about 45 min.) About one hour later the discomfort in my arch increased. It took about 2 days for the pain to disappear (could not wear Kipers SDO's during this time).

I have heard that treadmills can cause feet problems. I cannot understand what factors let to my pain. Why can i walk outside for hours on end...up and down hills...feel great...but yet experience foot pain on the treadmill? Do you think speed was a factor? I do not hold on the handrails. In fact, my treadmill has arms that move forward and backward...i do use them intermittingly.

Its a mystery to me? Any thoughts would be welcome.

Thank yu for your time,

sandy

Result number: 61

Message Number 240135

Dr.Kiper's SDO's View Thread
Posted by sandy g on 12/02/07 at 08:21

Hi there....I have not posted in a long while but have posted many many times in the past when i had severe burning, nerve and muscle pain in my ankles, heels, and feet. I have plantar fascitis and fibromyalgia. Dr. Kiper's SDO's are just brilliant! Before i tried these SDO's i went thru SEVEN pairs of traditional inserts....none worked. I have been wearing Dr. Kipers SDO's for about 4 yrs. and i have absolutely no...yes no heel pain. Please email me with any questions....rshathse at earthlink.net

Result number: 62
Searching file 23

Message Number 239125

Re: Sleep Number Bed View Thread
Posted by Misstacalone on 11/07/07 at 16:27

I have a sleep number bed due to my fibromyalgia and husbands 3 herniated disk in his back, we sleep fine except the matress slides off the foundation. they tell you when you buy the bed it takes 7-10 days for your body to get used to the bed, they are right there.I only have 1 problem,I just want ot have my bed stay put.

Result number: 63

Message Number 238437

Re: painful knot in arch of foot View Thread
Posted by Susan on 10/25/07 at 12:51

I have a knot in each foot at the same place and my foot doc. injected the knots with a cortizone injection when they get bab. This causes them to go away for about a uear. I have Fibromyalgia and he siad it comes from that.

Result number: 64

Message Number 237302

Re: Just need a sympathetic ear. - Foods = Inflammation View Thread
Posted by Dr. Wedemeyer on 10/07/07 at 18:22

Ed you turkey!!

We see this with chronic pain patients and those who develop reactive fibromyalgia all the time Ed. I always include a diet profile in the history and often can guess which people will fare well and which will become long term and chronic. Many of them report smoking and many downplay the number of packs/years I bet.

One cigarette destroys 25-50 mg of vitamin C. The RDA is a paltry 60 mg for adults. I assume when you perform surgery you have to breach the fascia and often ligaments and tendons are your target. These tissues are derived from collagen which relies on C, copper, manganese, zinc and selenium to cross-link and heal adequately.

Not to mention the decreased oxygenation and tissue perfusion associated with the smoker. No offense but they should have outlawed cigarettes a long time ago. It's the #1 cause of preventable disease and death in the country and it's profitable unfortunately.

Result number: 65

Message Number 236202

Toe Implant Problems View Thread
Posted by Julie R. on 9/17/07 at 09:51

About 8 years ago (at age 39) I had a total joint replacement of my left big toe. This is a double-stemmed implant, I believe it is a 'Swanson' implant. I have had nothing but problems since the implant. I have been to the doctor repeatedly over the years with complaints about the pain and swelling that has never gone away. I've consulted with several orthopedic doctors as well as the podiatrist. All x-rays show the implant to be in perfect alignment with no suspicion of loosening.

I am fairly convinced that I am allergic to or have a sensitiviy to the implant. I am extremely allergic to metals -- can't wear jewelry, watches, metal belt buckles, etc. or I break out in a rash. Although I've asked if this could be the problem, the doctors essentially tell me that titanium is hypo-allergenic and it's unlikely I could be allergic. As I mentioned, the foot has continual pain, it stays swollen, and I have a constant tingling sensation.

I have tried to avoid further surgeries as long as possible, but feel I need to take some action in the near future to get some relief for this situation. I understand the potential options could be:
1)Replace the current implant with an implant consisting of different materials.
2)Fuse the foot with a bone graft (from my hip or a donor bone)
3)Remove the implant and don't replace it with anything

Are there other options available? Can you provide any specific recommendations, including positives and negatives to those possibilities? At this time I am 47 years old and try to be quite active, although the foot pain and a recent fibromyalgia diagnosis pose limitations.

I would greatly appreciate any advice you can provide.

Result number: 66

Message Number 235630

Re: DRX9000 - for Type 1 Diabetics View Thread
Posted by Denise D. on 9/07/07 at 02:53

It's 3AM and I've been reading all these threads because yesterday I visited an office that offered Spinal Decompression with the DRX9000. I've read the mixed reviews about it. I don't doubt that it does help some people and not others (as everything in life has its positives and negatives). I also dealt with the 'car salesman' routine and they did tell me the payments would be anywhere from $5800 to $6000. The deal at this office is...they don't do the billing, so they make you fill out a form to take out a loan to pay for services. That raised the red flag for me. And believe me, even though I can't afford another loan at this time, I am in such excruciating pain that I would almost consider just taking that loan out. But I have to be realistic about this. I wouldn't want to dish out 6000 bucks only to be disappointed. My quandary pertains to the fact that I've been a diabetic since I was 4. My sugars aren't well controlled, and a lot of it is due to the fact that I'm always in pain (I also have fibromyalgia), so I wonder what my healing percentage would be. Have any of you DCs out there used the DRX9000 on Type I Diabetics and if so, how well did they heal? I'd like to find out from someone else (like Dr. Steve or Dr. Wedemeyer), rather than ask the chiropractor who I went to see yesterday. I had no hesitation in telling the doctor that I really couldn't afford that kind of money, and to be honest, I may check out other alternatives, such as a chiropractor who uses the Cox system or McKenzie techniques. Thanks in advance for responses.

Result number: 67

Message Number 235629

Re: DRX9000 - for Type 1 Diabetics View Thread
Posted by Denise D. on 9/07/07 at 02:51

It's 3AM and I've been reading all these threads because yesterday I visited an office that offered Spinal Decompression with the DRX9000. I've read the mixed reviews about it. I don't doubt that it does help some people and not others (as everything in life has its positives and negatives). I also dealt with the 'car salesman' routine and they did tell me the payments would be anywhere from $5800 to $6000. The deal at this office is...they don't do the billing, so they make you fill out a form to take out a loan to pay for services. That raised the red flag for me. And believe me, even though I can't afford another loan at this time, I am in such excruciating pain that I would almost consider just taking that loan out. But I have to be realistic about this. I wouldn't want to dish out 6000 bucks only to be disappointed. My quandary pertains to the fact that I've been a diabetic since I was 4. My sugars aren't well controlled, and a lot of it is due to the fact that I'm always in pain (I also have fibromyalgia), so I wonder what my healing percentage would be. Have any of you DCs out there used the DRX9000 on Type I Diabetics and if so, how well did they heal? I'd like to find out from someone else (like Dr. Steve or Dr. Wedemeyer), rather than ask the chiropractor who I went to see yesterday. I had no hesitation in telling the doctor that I really couldn't afford that kind of money, and to be honest, I may check out other alternatives, such as a chiropractor who uses the Cox system or McKenzie techniques. Thanks in advance for responses.

Result number: 68

Message Number 234895

Re: WINTERGREEN TEA View Thread
Posted by cruzc on 8/25/07 at 09:31

Thanks Dr. Ed! This may sound bizarre, but it's actually good news that no one posted a reply since that means to me that no one has tried it! I'll be the guinea pig for everyone and see what happens! =) I've been suffering from Fibromyalgia and PF for nine years now and have found nothing to give me a break. Coincidentally I was diagnosed with both during the same time and after a vehicle accident. A.R.T. had me up and running at again, at least helped me get out of bed and allowed me to become physically active again. I swear by it! But I haven't found a permanent solution or anything close to it until this lady I met told me about her sister who is perfectly well now just by drinking wintergreen tea. I'm sure the box has instructions on it so I plan not to overdose. =)

Now I can't wait to smell it and taste it. Thanks again and wish me luck! I will report shortly when I buy it. It appears that I have to go to a market in the 'dark side' of town to find this tea. I thought a Henry's Market would have it, but not so lucky. My boyfriend said he'll go with me. I'll feel safer. He's a cop. =))

Result number: 69

Message Number 234865

I am so confused now View Thread
Posted by vivib861 on 8/24/07 at 11:19

I got an initial report from my podistrist with a dx of post traumatic tarsal tunnel syndrom and possible RSD. There is moderate swelling of the left ankle with narrowing of the tibiotalar mortis. He put me on neurontin 300 mg t.i.d. I have a nerve conduction study next month. However, if the neurontin 'deadens' nerves, should it be stopped prior to surgery? I have been taking it for 2 weeks, has not helped the pain in the ankle at all but has helped with fibromyalgia that I have. I know it is up to the doctors, but with the narrowing that I have, is surgery the only option to releive this?

Result number: 70

Message Number 234419

Re: recovery from pttd View Thread
Posted by JoAnne on 8/15/07 at 07:14

I had a total plantar fascitis release in early June and my foot is still sore but not 'as' painful as it would get before surgery- however I have new highly tender sore areas on the top of my foot or arch that I never had before and sometimes it radiates slightly up the front of my leg- Is this normal and will it go away in time? also I am doing nothing PT wise since surgery- my surgeon says my foot looks great and now it is just time to heal everything-should I be wearing a brace or be doing exercises? I tried everything out there prior to surgery that was available to me through a physical thereapist and nothing worked--I'm not sorry I had this however it seems I have traded one discomfort for another and yet---it's less painful now-Am I hoping for too much? I also have fibromyalgia which is under control- Should I still be wearing my orthodic with my 'fixed' foot? Please advise--thanks!

Result number: 71

Message Number 232300

Re: heel spurs in both feet View Thread
Posted by Dr. Goldstein on 6/30/07 at 17:00

It is tough when you have fibromyalgia which may exacerbate the symptoms you have. Surgery is not always the solution. I recommend the following. You should be wearing nightsplints which you can purchase off the website. A different anti-inflammatory may work better for you such as naprosyn. What if anything do you take for your fibromyalgia? patients with fibromyalgia seem to benefit from medications like Elavil. I have used ultracet with fibromyalgia patients as well. Physical therapy or biofeedback is helpful. Do you wear any type of orthotics? I think there are many other avenues for you to try.

Result number: 72

Message Number 232031

Re: Plantar fascitis, diabetes, fibromyalgia, and custom sandals. View Thread
Posted by Jeremy L on 6/24/07 at 20:51

jezskates at yahoo.com

Result number: 73

Message Number 232007

Re: Plantar fascitis, diabetes, fibromyalgia, and custom sandals. View Thread
Posted by Dr. Wedemeyer on 6/24/07 at 11:15

Good info Jeremy. I don't have your email though.

Result number: 74

Message Number 232003

Re: Plantar fascitis, diabetes, fibromyalgia, and custom sandals. View Thread
Posted by Jeremy L on 6/24/07 at 08:07

I am limited in what I can do as far as constructing custom shoes. I can do sandals and fairly complicated modifications with the equipment I have. When dealing with certain designs, it's very helpful to have lasting and soling machines as well as a long arm sewing machine; none of which I have here.

Options for fully enclosed shoes include the following:

PW Minor In my opinion these guys do the finest custom work. There's a greater variety in styles, and their expertise is unquestioned. Do expect to pay more of a premium for their work.

American Shoe Corp These guys do a pretty decent job, and I've been using them for custom diabetic orthotics in cases where my workload exceeds taking in additional casts. My only caveat would be that they have had changes in their lab crew, and I have not been getting the same quality of work that I once expected from them. Due to this, I haven't used them for insert services for the past quarter.

Branier I strongly suggest you seek a shoe maker beyond this group. They are fast and relatively inexpensive; however, their finished products reflect their cheap practices.

Lord These are high quality, custom molded shoes. They are especially effective where lighter weight is a primary concern.

Tru-Mold They have an excellent reputation, although it's been years since I last used them. As long as nothing has seriously changed in their lab practices, I would anticipate that they will produce a quality shoe.

There are other manufacturers to consider. I listed those who I have used personally or have seen their finished work on patients. You can look through the Pedorthic Product Reference guide at www.pedorthics.org for more.

On a final note, I personally shy away from custom molded products as much as I can. Even with the finest manufacturers, I have never dispensed a pair that did not require some sort of additional adjustment or modification. Most patients hate them because they look just like their deformed feet. I find that the vast majority of the time it's reasonable to use a carefully selected OTC shoe with little or no modification necessary. Even in many cases of unilateral Charcot arthropy, excellent results can be achieved by slitting the sole of the one shoe and expanding the shank. Patients are happy with this because both feet get an adequate therapeutic fit and the shoes look 'normal' to them.

Email me, if you get other thoughts or questions.

Result number: 75

Message Number 231994

Re: Plantar fascitis, diabetes, fibromyalgia, and custom sandals. View Thread
Posted by Dr. Wedemeyer on 6/23/07 at 21:02

I am searching for an experienced C.Ped who can fill custom shoe orders. Since I am a provider and only on the and fitting end of what I see in my office and probably will never work in a lab.

Result number: 76

Message Number 231991

Re: Plantar fascitis, diabetes, fibromyalgia, and custom sandals. View Thread
Posted by Jeremy L on 6/23/07 at 18:35

I get referrals from outside sources all the time. Is there something that you need?

Result number: 77

Message Number 231985

Re: Plantar fascitis, diabetes, fibromyalgia, and custom sandals. View Thread
Posted by Dr. Wedemeyer on 6/23/07 at 16:50

Jeremy do you fill custom shoe mods outside of the practice that you work with?

Result number: 78

Message Number 231980

Re: Plantar fascitis, diabetes, fibromyalgia, and custom sandals. View Thread
Posted by Jeremy L on 6/23/07 at 12:34

Sorry to hear about your flux of various problems. Treating each of these individually is usually very successful. Treating them all in one person can obviously be a challenge. One thing I can say with a fair amount of certainty is that a standard OTC footbed likely won't solve your problems, no matter what kind of footwear they are inserted. Here are some things to consider:

1. There are plenty of depth shoes that do not necessarily look like something an octogenarian would wear, many of which will accommodate a 2E width forefoot. Selecting from these brands and styles will be determined greatly by also evaluating your heel and instep dimensions. You mentioned Apex, but you may find something you like better in their Lenex, Ariya and Essence collections. New Balance, Drew, Natural Step, Saucony, PW Minor and Brooks are just a few of the other brands which may be a good match for you.

With your fibromyalgia you will also benefit from the quality shanking these brands typically employ. Reducing torsional motion that shanks provide tends to go a long way in keeping the connective tissue more free from pain.

2. Most people with the kinds of conditions you describe do not do well with typical functional orthotic designs. Trying to create too much functional control aggravates the tissue leading to fibromyalgia symptoms suffered by these individuals. Creating an orthotic design that concentrates on full plantar contact and soft contact surfaces help. Also creating an accommodative cast, rather than open chain casting techniques, helps quite a bit. You might find success with some sort of hybrid construction, which places an emphasis on maintaining a supportive base structure (polypropelene or XPE shell, as examples) covered with cushioned bi or trilaminates.

3. Yes, custom sandals do still exist. Options include inserting custom orthotics into sandals with deep, removable inlays (i.e. Finn Comfort, Kumfs, Drew, Helle Comfort, Bite, etc), or having the entire sandal custom crafted. When I make these, the footbed portion has the same benefits (and usually very similar construction) as a custom orthotic. The upper can be made to the graphic and fit requirements of the patient, or transferred from an existing sandal.

I just dispensed a Birkenstock Boston crafted this way, yesterday. The patient had done well with a Birk clog with a urethane molded outsole which was fitted with a custom diabetic insert, but we wanted to use the versatility and durable reconstructive qualities of Birk's classic models.

Result number: 79

Message Number 231924

Plantar fascitis, diabetes, fibromyalgia, and custom sandals. View Thread
Posted by AliceG on 6/22/07 at 06:41

I've had plantar fascitis and fibromyalgia for 7-8 years. Running on concrete in old shoes isn't a good thing to do, even if you are 25, skinny and feel invincible.

I've gained a lot of weight since then. I've also developed iliotibial band syndrome and hip bursitis, which helped put on the last 20 pounds and made me very inactive. It's kind of hard to tell the doctor that reducing my activity level/staying off my feet just isn't an option at that point. Shopping and going to work is about all I do. Just recently I've been diagnosed with diabetes, which I'm absolutely thrilled about, given that I'm in my early 30's.

What sort of orthotics might be appropriate for me now? I don't like my custom ones, and I've looked at the insoles that come with the Apex Ambulator. Those seem very cushy and suitable for a high arch/PF/metatarsalgia. Are there any other OTC orthotics I might have good luck with, given I've got a high arch and wide forefoot, and wear a 2E shoe?

Also, I know there used to be such a thing as a custom casted sandal. I have no idea of the quality. Right now the shape of my orthotics is radically different than my custom birkenstocks.

I really do need to wear a slipper/sandal in the house. Both to support the plantar fascitis, and to protect my feet now that I'm diabetic.

Any thoughts on getting a sandal/slipper appropriate for PF *and* diabetes?

Thanks,
Alice

Result number: 80

Message Number 230621

Re: RSD/CRPS in ankle again - reocurrance after remission View Thread
Posted by jeabt on 5/26/07 at 22:09

rekha,
I have been reading through all your posts and am so impressed with your past experiences! You are amazing! You refused to give up, even when bad became worse, and with persistence and determination you succeeded, and shared your success with all of us here. You can fight this, if anyone can. You have already been successful and you'll do it again. My hope and prayer for you is you'll recover quickly, and to top it off have children who will be a blessing to you from conception and throughout their lives.

I am a therapist and have worked with RSD and nerve injuries for a long time. Here are some things I have learned: You can have both a nerve injury and RSD. In fact the nerve injury can cause the RSD if the nerve is overly irritated and you happen to be prone to RSD. I explain it like this: The sympathetic nervous system reacts normally to an injury like a fracture or pinched nerve by causing pain, swelling, and fibrosis (ie stiffening, rebuilding of collagen) in order to protect the injury. That way we feel the pain, avoid moving, and give the injury time to heal. As the injury begins to heal, the pain begins to subside, the swelling subsides, and then we can slowly begin to move the injured part. This usually takes from 3-6 weeks. The next stage is regaining movement and strength, but often the extremity stays stiff for about 6 more months before feeling normal again.

Sometimes a nerve is injured, or some irritation like an external fixator or overstretching a stiff joint prolongs the pain. The more prolonged and intense the pain, the more likely the sympathetic reflex response becomes abnormal. I have even seen a patient who took narcotics (on his own) and tried to mobilize his stiff hand after a fracture and wound up with RSD. Even though he didn't feel the pain, the sympathetic nervous system responded to his aggressive mobilizing and overreacted by the reflexive vascular and sensory changes of burning, intense pain, swelling, and more stiffness. The biggest problem with RSD is the sympathetic reflex does not turn off as it normally should. It stays turned on causing more burning, pain, swelling, redness, fibrosis (stiffness), then muscle and bone atrophy. It can continue to increase in pain and spread if the sympathetic feedback loop is not blocked in some way.

Blocking the sympathetic feedback loop: First and most effective is an immediate referral to a pain specialist as soon as we begin to realize RSD may be happening. There are few docs out there who really understand RSD like a pain specialist. Second, try to calm irritated nerve pain. Nerve pain is very strange. Think of a toothache: the nerve becomes irritated by cold or sharp pressure and begins to fire a warning: pain, Pain, PAIN! The pain may not happen immediately, but builds up- like turning on the light with a dimmer switch. Calming it down takes protecting the nerve and providing it with 98.6 neutral warmth (not too hot, never cold) and rest(2-3 weeks usually). Anti-inflammatories help reduce the swelling of the nerve. Avoiding irritating activity (cold, sharp pressure, over-stretching) reduces the nerves hyperactivity.

Gentle stimulation after it begins to calm down actually helps it to calm down more and further desensitizes it. When treating a hand patient with RSD I use this principle to calm the nerve pain down by having them use the fluidotherapy, which is basically ground corn cob dust heated to 100-115 degrees and blowing like a dust storm around the extremity. My patients think it feels like sitting on a warm sandy beach and moving one's hand through the sand until it becomes desensitized (not numb, just calmed down, less painful). Some of my patients call it Floridatherapy for this reason. The literature states the gentle dust storm of particles on the nervous system actually reduces the firing of the C pain fibers, causing a desensitization effect. A fluidotherapy machine is expensive and can usually only be accessed by going to a therapist, but I wouldn't be suprised if moving gently through a warm sand box could have the same kind of effect if the right temperature.

Two other strategies we use are stress-loading and active movement, but again, these have to be done within pain-free limits as the nerve calms down. Lack of movement when tissue is healed actually makes things worse. The joints become stiffer, lacking in synovial fluid required for nourishment, oxygen, and health of the joint and vascular stimulation is diminished starving the all the tissues involved. Also, bone becomes weaker and more brittle as it needs weight bearing to grow and keep it strong. The movement should not be forced and never painful. Later on, after the pain is gone (0-2/10,) gentle low-load, no pain, prolonged stretch can be used to regain movement. Stress-loading is slowly putting gentle weight down on the extremity without pain. We use a scale and try to increase the weight a little each day: 1#, 2#, 3#, etc. until the limb is able to bear full weight without pain. Never do we force the limb into more painful weight bearing or range of motion. The stellate ganglion blocks help with this, as we can do more moving, weight bearing, and desensitization after the blocks since the reflexive loop is temporarily blocked. Finally, when the sympathetic reflex goes into remission and pain is less than 1-2/10 we can carry on the rehabilitation, anywhere from a month to half a year later. I think it really depends on how quickly the pain doc is seen once RSD is recognized.

Unfortunately, I have not found the answer to the post RSD stiffness and contractures that become so rigid and hard after fibrosis of the extremity. I have tried a lot of different types of splints ( I work with hands) but they take so long to produce tissue change with the prolonged stress on them.

Regarding likelihood of developing RSD: It seems that some are more prone to it than others. One doc I worked with used to test his patients with a stress test (using cold/hot) before he would do elective surgery on the hand. If they were positive for a hyperactive sympathetic response, he would avoid the surgery.

Recently I had a patient recovering from RSD have surgery on her hand to relieve the contractures by having them mobilized while under anesthesia and a stellate ganglion block. She did not have a recurrence of her RSD which amazed me. But, I have to say, her contractures did not seem much improved after all she went through, and the doc wound up breaking one of her fingers! She was happy with the little improvements though and that is what is important. I am still wondering what can be used to soften and release the thickened fibrotic tissue which looks so similar to the changes in connective tissue with scloeroderma (a type of arthritis, thickening of the collagen, stiffness, shiney skin, swelling, etc.) I was wondering about relaxin, a hormone which I read was being used with fibromyalgia patients. Don't know if anyone has done any research...

Rekha, after reading your history, it seems that your former pf, and foot problems may have initiated the RSD, especially after the stretching and icing. You may have had nerve problems even then. With the RSD came the fibrotic changes (thickening and hardening of connective tissue in your foot and leg) may have made you more prone to further pf and tts. Overstretching can definitely irritate already sensitive nerves which may have been further at risk of impingment by swelling and fibrosis from the previous RSD, yet to begin another round of RSD, especially in those who have been prone to it in the past. Once you win this second battle from RSD and have no more pain which I know you will: Stay away from overstretching and ice! Use natural, pain-free stretches like slow careful walking, wear those supportive shoes, never squat, don't run uphill or on hard pavement, and get some really comfy gel inserts that make it feel like you are walking on a cloud.

One other note: I also had pf in both my feet, and I really hated stretching that tissue. In fact, I quit doing it because it hurt and seemed to make things worse. As a therapist I don't believe in making pain worse. Instead I found some really good supportive shoes (they were new balance 1122s) and soft, comfortable gel inserts which kept my feet warm and happy, and quit the activities which made the pf worse. (I found I would set it off by squatting, overstretching the plantar fascia when I would put stuff away or when I was doing yard work.) I used a step stool to sit low on instead of squatting and overstretching my feet. It worked, and took about 2 months to completely resolve after I made these changes. My husband, a PT, uses these principles all the time now when treating pf and has much better results.

Well, this is long, but hope it helps! jeabt

Result number: 81

Message Number 230548

Re: The China Study food food food -CASHEWS View Thread
Posted by Susan on 5/25/07 at 12:14

We've exchanged feeling good and being healthy with dangerous drugs that hide one symptom in exchange for 100 possible adverse effects, not to mention the cost. That's how smart we are and how advanced our health care system is. I prefer to call it our disease management system. A doctor friend who has totally drunk the standard American medical-pharmaceutical koolaid (and is also the sickest person I have ever met) said a friend of ours who has fibromyalgia 'needs to find a doctor to manage her disease.' exactly.

Result number: 82

Message Number 230350

Re: when all else fails? View Thread
Posted by kris on 5/22/07 at 22:10

Well for years I was told that surgery would not help me. I had tts for 9 years and developed fibromyalgia to go with my severe RLS. What a bundle of joy MY life has been with this. lol

Whatever you do, do try to keep a positive attitude. A book - When Walking Fails - helped me a bit.

I have a pain management doc. It helps not to have to beg for medication - that's for sure. I'm not on any heavy guns - tramadol, neurontin, mirapex mainly. No narcotics.

What I find of great help - might sound weird- is that my pain management doc understands that I hurt and shows sympathy. It is a very healing thing in and of itself to me.

He always asks if I need refills, I never have to ask. He also tends to handle my referrals, and I am glad. I never have to beg for those either. I mean, like to my orthopedic surgeon, for my HMO requirements.

Result number: 83
Searching file 22

Message Number 229931

Re: Nerve Pain Medications - how long to take effect? View Thread
Posted by Kris on 5/15/07 at 19:31

He is right! Neurontin helps my feet - I take 2400mg a day in 4 doses - 4 doses works out best for me. However, it doesn't work for everyone. Lyrica works better for a lot of people.

I see a pain management doc as well as my orthopedic surgeon and neurologist. It is my experience that the pain management doc is the best to handle my meds with pain, but that nothing they ever gave me has totally got rid of the pain.

The best they've done for me is take the edge off, but it is a sharp edge.

I have fibromyalgia too and osteoarthritis. For me, a combo of celebrex, neurontin, mirapex, and ultracet keep me human.

Since my recent tts, I've not had to take any of the ultracet! Surgery really (so far) has been the best relief for me.

Result number: 84

Message Number 229895

Fibromyalgia Info View Thread
Posted by john h on 5/15/07 at 10:26

Just information:

http://www.healthcentral.com/chronic-pain/fibromyalgia-38158-5.html?ic=6019

Result number: 85

Message Number 228586

advice for morton's neuroma (other issues involved) View Thread
Posted by Suzanne L on 4/26/07 at 11:35

I have been dx with a morton's neuroma in my right foot. The problem started in December (due to use of an elliptical machine, I believe, which I immediately quit using), and I saw a podiatrist shortly thereafter.

A bit of background on me - I have chronic achilles tendinosis (same foot) that has been an issue since at least 2001. I took up running in 1999-2000, which I believe initially brought on the condition - though it didn't become a problem until some time after I'd quit running, which I thought was odd. Anyway, for several years, I have been mostly inactive. In Jan 2005, I had a baby, and then I started having problems in other areas - elbows, hips, shoulder. I was dx with fibromyalgia. Per the rheumatologist's instruction, I started trying to exercise again. I stuck mainly to walking. At that time, I was wearing a Saucony running shoe. I have wide feet and relatively high arches - but they are not flat. I overpronate. The walking went pretty well, as I was able to work up to 30 min a few days per week. It was touch and go but an improvement. Then I started using the cursed elliptical.

My podiatrist first suggested that I replace my running shoes with something wider. My regular daily shoes already had a very wide toe box (and no heels). I really don't think I've done much to abuse my feet, unlike some patients with this problem. I don't wear heels or tight shoes. I'm usually barefoot at home. (I do have a weight problem, and apparently the bony structure of my feet is a little strange). The pod also said to ice the bottom of my foot before bed. I slacked on this inititally. He claims he's had a neuroma for 10 years and managed it with only regular icing and proper shoes. I now have a pair of extra wide Brooks shoes, which seemed extremely comfortable when I purchased them (a month or two ago) but wearing them all the time doesn't seem to be helping me. My neuroma has gotten worse in the past couple of weeks, to the point that it bothers me during the night. It's not extremely painful, but it's bothersome. I've tried icing several times per day in the past week, and it doesn't seem to have much effect. We tried a pad (metatarsal? in the middle of the ball) but I have found it to be annoying and painful to stand on for long.

My podiatrist claims that he does not have good luck with injections in people with FMS - something to the effect that the injection is often not well tolerated. My rheumatologist thinks that's bunk and would choose injections before surgery. I'm concerned about any injections that may damage the fat pad or anything else in my foot, because I really don't need any other problems! This pod prefers to do a neurectomy (over decompression) and his office staff told me that they 'tie the nerve endings together', which I thought was weird. I haven't been to any other podiatrists about the neuroma yet.

What daily choices should I be making? What risks are there to the various treatment options, and is FMS a contraindication for any of them? I'd obviously like to go the conservative route first, but as is the case with every other injury I've acquired in the past few years, this just isn't responding well thus far.

Thanks,
Suzanne

Result number: 86

Message Number 226859

Re: Question for Julie about stretching ME TOO!! PS View Thread
Posted by F.S. on 4/05/07 at 12:01

Julie:
Thank you for your advice. It is so frustrating to not be able to do what I want to do as I really benefit from stretching and exercise. My back is often very tight. I was diagnosed with fibromyalgia years ago but I often wonder if that is accurate. The tts is a much bigger problem in my opinion.

Yes, I agree meditation and relaxtion would be grand. I am always so interested in getting my heart rate up. Keeping my bones strong. All the things one must be aware of in her mid 50's. R&R sometimes takes a backseat. I really sleep better and my back is not so tight when I do yoga. I will mostly do sitting poses now.

I also swim. I mostly aqua jog(so as not to get my hair wet (ha )I know silly isn't it) but it is a great way to get heart rate up and not hurt feet. I read your article on swimming. Very nice article. I will read it again.

Thank you again. Hope summer has arrived for you in London. Take care and any additional advice more me I would love. Thank you, a fellow sufferer!!

Result number: 87

Message Number 226126

tts or something else? please help! View Thread
Posted by Rekha on 3/28/07 at 09:23


Hello, I need some advice, please, from any Dr.

I was pregnant, but lost the fetus at 9 weeks.

I was having foot problems due to Pregnancy after 3 years of no problems, and I was so happy to be pregnant I didnt care. I started having pf pain in right foot and started the stretches and taping.
I stretched my left foot and it brought on some nerve pain.

Back in 2004, when I stretched my LEFT foot, it brought on some type of weird nerve pain..that went up my leg....two podiatrists thought it is RSD because of its weird presentation. I have to say that almost 3 highly acclaimed Pain Doctors did not think so...I had no shiny skin, no nail problems, just nerve pain in my ankle/calf area, burning and weird sensations, sensitivity to touch and cold. One Pain dr said that this is a very weird presentation of RSD if it is that, and she has never seen it like this

The Pain Dr still did two blocks....and I felt fine..and returned to work and never thought about it again. It could be that the pain went away on its own..or the drugs helped. Pain dr suggested I might have fibromyalgia

My family had me thinking that I had imagined the whole thing, and I actually thought so also...until this has come back, and this is not my imagination. It is horrible.

What could this possibly be? I have an appt to see my Dr.

Result number: 88

Message Number 225233

Re: Social Security Disability? View Thread
Posted by sara d on 3/15/07 at 20:13

Hi mcurnett...In 1987 i was successful in obtaining SSDI without a lawyer, on my second try. I have fibromyalgia, but because at that time there was no 'line' for fibromyalgia i received SSDi due to depression. Please let me know if can help .....sara

Result number: 89

Message Number 225004

Re: Dr's please read Q's before Weds 14th March 2007 would love your opinion! View Thread
Posted by Dr. David S. Wander on 3/12/07 at 14:26

Helen,
I'll attempt to answer your questions;

1) I do NOT use a tourniquet when performing tarsal tunnel surgery. If a tourniquet is utilized, the GENERAL rule is approximately a 1.5 hour maximum. Some doctors go beyond, and some doctors won't go that long. The 're-perfusion' rule, is once the tourniquet has been up for 1.5 hours, is to release the tourniquet, and let the tissue re-perfuse for 5 minutes/per half hour that the tourniquet had been inflated. Therefore, if it was up for 1.5 hours, you would re-perfuse the tissue for 15 minutes prior to re-inflation. If a tourniquet is used at the level of the ankle, a patient can tolerate it with local or local with IV sedation. If a tourniquet is used on the thigh, general anesthesia is usually utilized or else it would be too uncomfortable. But once again, I do NOT use a tourniquet for tarsal tunnel surgery.

2)I believe that tarsal tunnel syndrome absolutely exists. It can exist alone, or in conjunction with other contributing disorders.

3) I also believe that RSD/CRPS DOES exist,and that it's not in the mind of the patient or some made up disorder.

4) I believe fibromyalgia exists, but I believe it is often over-diagnosed when doctors are too lazy to listen to a patient's true problems or history, and use it as a diagnosis of exclusion.

5)I do not believe that injections for TTS need to be ultrasound guided.

6) I am not convinced that cryosurgery is a viable option for TRUE tarsal tunnel surgery. Since the tibial nerve is a mixed fiber nerve of motor and sensory fibers, I would not recommend cryosurgery on this nerve, since it can theoretically damage motor fibers. The procedure Dr. Goldstein has been performing involves treating the very distal branches of the tarsal tunnel, and not the actual tibial nerve. These branches are only sensory fibers, and these treatments may not be effective for cases of 'full blown' tarsal tunnel syndrome, but may be effective for cases of very distal nerve entrapments.

7) I have not noticed a correlation between IBS and neuropathy symptoms in my practice, but it hasn't been a correlation I've looked for in the past.

8) I have no experience with MR Neurography Scans.

9) Metanx is basically a prescription version of B vitamins that was originally formulated to decrease elevated levels of homocysteine for cardiac patients. It was then discovered that the original damage/risk from homocysteine to cardica patients may have been overstated. However, the benefits of these vitamins on nerve healing is still well known. The combination is a prescription because the way it is formulated allows a higher percentage of patients to utilize the beneficial effects of the ingredients compared to taking simple folate (visit the company website for a detailed explanation). The B vitamins are water soluble and there are little if any risks in taking Metanx, so it's certainly worth a try.

10) I have read reports and anecdotal stories of decreased symptoms of neuropathy following antibiotic usage, but have never read any explanation for this phenomenon. I will see if I can find any information on this when I get a chance.

I hope this helps.

Result number: 90

Message Number 224988

Dr's please read Q's before Weds 14th March 2007 would love your opinion! View Thread
Posted by Bambi/Helen Tap4TTS.co.uk on 3/12/07 at 11:57

Hi all,

As you know I am on Pain Management programme in UK approaching my third week out of the four. This Wednesday is questions and answers time with the doctors....I have a strong feeling that I will not get their opinions as it is not their field and I have already experienced some blank looks! So as not to be disappointed I would appreciate your opinions as you have much experience in this field.

Sorry if you have answered some of the questions in the past, but I have added them in the list format in which I will ask the doctors on Wednesday.

For a TTS op...
would you use a tourniquet or not?
if yes what would be the maximum tourniquet time before release blood flow again?
local or general anaesthetic?

Do you believe...?
that TTS exists or that there must be another underlying cause either hereditary or due to back problems?
CRPS (RSD) exist or a 'Really Stupid Diagnosis' for another condition which hasn't been found/diagnosed yet?
Fibromyalgia exist?

Do you believe that nerve blocks for TTS should be ultrasound guided or not necessary?

If you beleive that Cyrosurgery is a good treatment, at what stage would a patient opt for this? as an alternative to surgery? or even if the patient has had a failed open TTS surgery and developes CRPS / PN and central nervous system is hypersensitive?

Is Irritable Bowel Syndrome (type symptoms) a common complaint with Neuropathy? I know that medication can cause these symptoms but what if they persist after 8 months of stooping all meds, is it still due to having been on pain meds?

Have you had any experience with MR Neurograpy scan? Were you happy with the readings? Are they a more accurate way of diagnosing nerve entrapments / CRPS? or would you recommend the procedure along side an NCV/EMG test?

Metanx ...
what does it contain?
if it is mainly vitamins and relatively safe, why is it not available over the counter?
what are the reported side effects?
I am not diabetic and my blood test results are all normal, can I still try Metanx?

I have recently been on a large dose of antibiotics for a common infection, I found that has had a positive effect on my neuropathy/pain. Have you had any reports of this?



Many thanks,

Helen.
www.Tap4TTS.co.uk

Result number: 91

Message Number 224975

Dr's please read Q's before Wednesday 14th March 2007 would love your opinion! View Thread
Posted by Bambi/Helen Tap4TTS.co.uk on 3/12/07 at 09:58

Dr's please read Q's before Weds 14th March 2007 would love your opinion!

Hi all,

As you know I am on Pain Management programme in UK approaching my third week out of the four. This Wednesday is questions and answers time with the doctors....I have a strong feeling that I will not get their opinions as it is not their field and I have already experienced some blank looks! So as not to be disappointed I would appreciate your opinions as you have much experience in this field.

Sorry if you have answered some of the questions in the past, but I have added them in the list format in which I will ask the doctors on Wednesday.

For a TTS op...
would you use a tourniquet or not?
if yes what would be the maximum tourniquet time before release blood flow again?
local or general anaesthetic?

Do you believe...?
that TTS exists or that there must be another underlying cause either hereditary or due to back problems?
CRPS (RSD) exist or a 'Really Stupid Diagnosis' for another condition which hasn't been found/diagnosed yet?
Fibromyalgia exist?

Do you believe that nerve blocks for TTS should be ultrasound guided or not necessary?

If you beleive that Cyrosurgery is a good treatment, at what stage would a patient opt for this? as an alternative to surgery? or even if the patient has had a failed open TTS surgery and developes CRPS / PN and central nervous system is hypersensitive?

Is Irritable Bowel Syndrome (type symptoms) a common complaint with Neuropathy? I know that medication can cause these symptoms but what if they persist after 8 months of stooping all meds, is it still due to having been on pain meds?

Have you had any experience with MR Neurography scan? Were you happy with the readings? Are they a more accurate way of diagnosing nerve entrapments / CRPS? or would you recommend the procedure along side an NCV/EMG test?

Metanx ...
what does it contain?
if it is mainly vitamins and relatively safe, why is it not available over the counter?
what are the reported side effects?
I am not diabetic and my blood test results are all normal, can I still try Metanx?

I have recently been on a large dose of antibiotics for a common infection, I found that has had a positive effect on my neuropathy/pain. Have you had any reports of this?



Many thanks,

Helen.
www.Tap4TTS.co.uk

Result number: 92

Message Number 224699

RA and PF View Thread
Posted by Dr. Ed on 3/08/07 at 23:58

Kathy:

RA is a common cause of heel pain, often heel pain located at the origin of the plantar fascia but RA is not a cause of plantar fasciitis itself.
One could get into semantics and argue that if RA caused inflammation fo the origin of the plantar fascia then it is indeed causing plantar fasciitis but I will not go there. Interestingly, the heel can be an early indicator of RA before other joints are affected. Consider the fact that cortisone injections into joints are used for individuals with
RA -- a practitioner without a definitive diagnosis of heel pain provides a cortisone shot into a rheumatoid heel and the patient has significant rapid relief.

Remember the PF has a stronger inflammatory component in its early stages but then may progress to plantar fascioisis in which there is virtually no inflammation but plenty of pain. Injections seem to work well only in the early stages because of the higher inflammatory component.

I have seen many patients with both fibromyalgia and plantar fasciitis yet it always appeared that the fibromyalgia contributed to but was not the primary cause of PF.

Dr. Ed

Result number: 93

Message Number 224614

Re: PF as an Autoimmune Disease/ Arthritis View Thread
Posted by Kathy G on 3/08/07 at 10:28


Okay, this is not the Doctors' Board and you all know I'm not a doctor. Here's what I've been able to gather from the many doctors I've seen for the various ailments I have. PF, in and of itself, doesn't indicate an autoimmune deficiency. If the patient displays symptoms in other parts of the body, then further testing might be advised.

Other symptoms might be chronic muscle spasms, neck pain, tendonitis, Raynaud's Syndrome - anything that the normal person with PF doesn't necessarily have. In my case, I had all of the above, along with Pernicious Anemia and Fibromyalgia, which I have another personal theory on but won't get into here. I've been tested for RA so many times, I could probably paper a small room with all the negative results! Every few years, a doctor would suggest I have another test and this has gone on for twenty years. Finally, I put my foot down. I don't show any signs of RA and enough is enough. I've had the symptoms long enough for them to see that I present no signs of RA. I do have extreme inflammation problems and advanced osteoarthritis, not rheumatoid arthritis. The rheumatologist I saw thought I had Ankylosing Sponylitis and despite my protests that my spine has always been this rigid, he ordered a complete set of x-rays. I don't have it.

It is my opinion that some people have bodies that suffer from inflammtion problems for no known reason. I've thought about my past, probably because so many stupid people ask me what I did to cause this to happen to me. I have no answers and neither do the doctors. I was an active child - a tom boy, actually. I swam every day of the summer of my most of my childhood, right up to age seventeen. I was never over weight. I ate well. I didn't drink. I never did drugs. I exercised regularly. Heck, I had an obnoxiously healthy lifestyle. Now, at fifty-seven, the radiologist who read the results of my cervical x-rays two years ago questioned my date of birth because the deterioration looked more like what he'd have expected in an eighty year old woman. I've had a joint replacement in my thumb and have to have the other one done soon. Who knows why?

I think there's a condition that has yet to be identified and until it is, I humbly suggest it be called "Kathyitis."

And by the way, I've met many people with PF and the only thing I notice that seems to be a commonality is that most of them have Fibromyalgia.

Now, it would be interesting to hear if the C.Peds and Pods who post have found RA to be common in their PF patients. Dr. Ed, have you found that to be true?

Result number: 94

Message Number 223695

Re: Severe foot pain View Thread
Posted by jessica on 2/26/07 at 19:50

I am going through the same thing. I had to quit my job because of my planter fascitis, I am a certified chef and on my feet all day. I had a cesarean in 05 and since have got osteo arthritis in both knees, plantar fascitis, fibromyalgia. I have no contro over my health and it is so depressing. I am going to a neurologist for answers and have got orthodics for my feet. Anti inflamatorys and cortizone shots have not worked. The pain os so bad i have to wear my shoes all day and night till i go to bed. I am only 25 years old and I am a single mother of a 17 month old. I hate constantly bieng in pain, I want to be active with my son but i cant. I am trying to lose weight, im not a plus size or anything just need to be thiner to take the strain of my knees and feet. My Dad is ordering me Ezorb for my feet you might want to try it im willing to try anything!

Good Luck, Jessica Piasecki email is jessica_piasecki at yahoo.com

Result number: 95

Message Number 223694

Re: Severe foot pain View Thread
Posted by jessica on 2/26/07 at 19:50

I am going through the same thing. I had to quit my job because of my planter fascitis, I am a certified chef and on my feet all day. I had a cesarean in 05 and since have got osteo arthritis in both knees, plantar fascitis, fibromyalgia. I have no contro over my health and it is so depressing. I am going to a neurologist for answers and have got orthodics for my feet. Anti inflamatorys and cortizone shots have not worked. The pain os so bad i have to wear my shoes all day and night till i go to bed. I am only 25 years old and I am a single mother of a 17 month old. I hate constantly bieng in pain, I want to be active with my son but i cant. I am trying to lose weight, im not a plus size or anything just need to be thiner to take the strain of my knees and feet. My Dad is ordering me Ezorb for my feet you might want to try it im willing to try anything!

Good Luck, Jessica Piasecki email is jessica_piasecki at yahoo.com

Result number: 96

Message Number 223061

Re: To Hope View Thread
Posted by sara d on 2/19/07 at 20:13

Hi Ralph and Lisa,

I am going to jump in here for a bit........

I have been e-mailing Hope personally for about 3 months and did speak with her by phone on 2/11.

U guys are giving hope wonderful suggestions (really), but i think at this point Hope needs to take herself to a hospital and placed on IV fluids and enteral (tube) feedings. I have told her this......that she has two choices ...eat or go the the hospital.
I am a chronic pain sufferer for 20 yrs (fibromyalgia), I receive SSDI, and work part time as a Dietitian at a local long term care facility....so i fully understand what chronic pain can do to your spirit and body.....i also understand what not eating can do to your spirit and your body.

Eating popcorn laden with butter/oil was a very poor choice...i have told her that foods with lots of fat are not good to eat when u have not eaten for over 2 wks... because one can get very nauseus...my food suggestions have been the same as yours.

I have explained to her that as her days of non eating continue she will have less and less of an appetite. I told her not to wait for her appetite to return because that "just aint gonna happen" . I am sure she is in a period of ketoacidosis...where your body begins to breakdown fat and muscle tissue.....hence chest pain.

The choice of Cymbalta for an antidepressant is outrageous! Cymbalta causes aneroxia....duh!

I think her physicians are "out to lunch"....but more important i think Hope needs to be her own advocate, but she has proven time and time again that she just cannot be her own advocate....not living on 50 calories per day

She really doesnt get it (but maybe she does get it?)....she is not thriving any more...there is no thriving without fuel.

I just wanted to let u guys know what some of her other friends have been telling her.

I check heelsuprs each day and am happy to see her posts....that means she is still around.

thanks for listening......sara

Result number: 97

Message Number 222827

Re: TTS diagnosis, but pain is in outer ankles View Thread
Posted by Amanda on 2/17/07 at 10:26

I have had a complete workup of my spine - absolutely no problems. I also only take the medication - Neurontin for this problem. Does proximal mean farther away? I previously had a diagnosis of fibromyalgia, but I don't have symptoms of it now nor for a couple of years so I don't think that could be causing it. I think I do have fluid retention on the outer part of my ankle, but that's also where it hurts so my theory is that my whole ankle joint is out of alignment and is causing both tibial nerve and sural nerve problems. I had a ankle prolapse of my joint capsule which has resolved. What do you think?

Result number: 98

Message Number 222826

Re: TTS diagnosis, but pain is in outer ankles View Thread
Posted by Amanda on 2/17/07 at 10:26

I have had a complete workup of my spine - absolutely no problems. I also only take the medication - Neurontin for this problem. Does proximal mean farther away? I previously had a diagnosis of fibromyalgia, but I don't have symptoms of it now nor for a couple of years so I don't think that could be causing it. I think I do have fluid retention on the outer part of my ankle, but that's also where it hurts so my theory is that my whole ankle joint is out of alignment and is causing both tibial nerve and sural nerve problems. I had a ankle prolapse of my joint capsule which has resolved. What do you think?

Result number: 99

Message Number 222102

Dressier support shoes for intensive dancing... View Thread
Posted by AliceG on 2/10/07 at 17:25

I've had plantar fascitis/sesamoiditis for 7 years. Part of this was due to inflexibility from undiagnosed fibromyalgia. I mostly had a remission when I started taking the subway everywhere and lived ~5 minutes walk from the station. Enforced mild exercise does wonders.

5 years ago I started swing dancing, and have done varying amounts depending on my free time and work/grad school schedule.

What I usually did was to take tennis shoes and glue suede or leather on the bottom. That was pretty common. I used solid black or white to be a little more fashion conscious.

For this style of dancing you tend to have your weight on the balls of your feet most of the time, often with your knees a little bent. My calves can really get tight after this.

Now I'm trying to figure out what shoes to wear if a) I'm in something approaching formal dress or b) I'm doing a dance style where a heel helps, but preferrably in a wedge style.


I bought one of the P.W. Minor 'Fashion' style name shoes off of e-bay that has a T-strap. It turned out to be a little big when I thought I was just going to wear it for dressy occasions.

Instead I decided to convert it to a dance shoe by gluing massive toe cushioning in.

What I found was that because the shoes were a little too big, they bent a little further forward on my feet than would have been best. I also couldn't bear weight on my midfoot well (which would normally be where I spin) because of not having the support there. And I pronated a lot more I think, because I didn't have the support to keep my foot from wobbling.


So, with the constraints of:
a) can be worn with a skirt without looking stupid
b) has very cushioned sole
c) no separate heel and toe
d) wear with an orthotic
does anyone have any suggestions?

I am considering a propet mary jane.

Result number: 100

Message Number 220094

Re: back from second visit to therapy View Thread
Posted by F.S. on 1/18/07 at 19:41

HI Linda: I am so sorry you are in pain tonight. Are you taking any medication for nerve pain?

I have had alot of PT. I have never had this happen to me and I have fibromyalgia and have a very sensitive body. I would stress to this PT that you are in so much distress and hopefully she will back off. This sounds a bit harsh to me. Also, massage in the tunnel area is really off limits for us. I would just really point out to her what you can tolerate at this moment in time and hopefully you can build up to where she needs to work.

Take care. This is just so hard to deal with .We all feel your pain. hugs to you

Result number: 101
Searching file 21

Message Number 219247

Re: Meg, how's it going? View Thread
Posted by meg s on 1/09/07 at 22:21

Hi there -
Meg is doing great. Fred the Foot is being a real pain and the body is not obeying Meg's instructions to stop hurting. A day of selective denial 
Since you asked...This journey started with a combination of things. I have fibromyalgia, thyroditis –both of which I consider in “remission” most of the time - poly-inflammatory arthritis and also bi-lateral TTS. Two years of trying everything and I decided to have the triple fusion. When super-doc opened up the foot the simple surgery turned interesting. The bones were like concrete and he had to radically resection each joint and add cadaver bones. Fred now has his own personal piercing of a 3" screw in each of the joints. Yes, it is the 4th metatarsal that is being the procrastinator of the trio, the other two have fused. The great thing is that being in a cast for the length of time the TTS really settled down in Fred. Ginger also needs a triple fusion but I am in hopes of making it one summer without surgery and frankly I’m afraid he’ll find more concrete. When I read the stories of others on this board I know that I am super lucky to not have their health problems and also to have great insurance.

I love my running shoes and don’t even care that I “run” at the speed of a tortoise. My Father owned a shoe store and when I went to college would you believe I had 22 pairs of tennis shoes. Tweed, plaids, you name it. He did not believe that heels were good for feet so I only had your basic black and white! Oh the drama when he retired and I had to start paying for my shoes!!

Was that an exciting game!! I’ve always liked the Cowboys and Patriots but have been a Seahawk fan since the team formed. I could not believe how it ended! It is going to be a very interesting game in Chicago. They thumped us badly in October but I live in hope that the Seahawks will win. It was such a fun ride last year but this not the same team as you well know. So root for us.

That is so great about your weather. I am envious! As I write this the wind is blowing at 45 miles an hour with gusts at 61 south of us. They tell us to expect 2 to 4 inches of snow tonight and then temperatures in the teens for the rest of week. At this rate our district will be making up lost days into July. I just don’t want to lose electricity for another 9 days as we did before Christmas. I actually like driving in the snow but the ice is another matter.

Go on a balmy walk for me please and thanks for asking about me. Hope I haven’t bored you to tears with the response!!

Result number: 102

Message Number 218096

Re: Question about cryosurgery etc. for plantar fibroma View Thread
Posted by Automatic Slim on 12/28/06 at 09:44

7 weeks post-cryo. The Fibromyalgia symptoms have subsided, everything feels pretty decent. Left foot does as well.

Had follow-up exam with Dr. DeMore. No feeling of pain when pressure is applied on area where fibroma is, what remaines there now is pretty minimal. Dr. DeMore reaffirms that about 60% of fibroma was erradicated after first cryo. All punctures from injections and the cryo-probe have healed very well.

Result number: 103

Message Number 217786

Re: Tarsal Tunnel/Plantar Fascitis View Thread
Posted by dan m on 12/22/06 at 23:45

I've been fighting PF since August. I had two bouts with it tenyears ago.I walk an hour a day and its my only real exercise. Based on my last bout with PF. I thought it was wierd thatt he cortisone shots were havingno effect whatsoever. I startedto notice some numbness in the toe and pain in the back of the heel where there is no plantar fascia. I mentioned it to my podiatrist and he dxed me with TTS on the spot, he did the Tinel's sign. Said I don't need expensive tests the Tinel's is positive. He wasnot looking happy. He took a mold for some custom orthotics ( he said my old ones from another doctor were lousy, and of course the hurt, and he was very impressed with OT orthotics called Downunders? and he liked the superfeet. Today I stopped walking for the first time, as it is getting unbearable and my other foot is starting tohurt as well. Yeah, i'm big, 230 and 5'11, but I've been the same weight for 15 years ( metabliic syndrome, insulin resistant, plus long history of fibromyalgia ) and darn am I in need of help...don't want surgery i watched the surgeons mangle my mother's knee to the point where she no longer has a knee at all...

Result number: 104

Message Number 217424

Re: Question about cryosurgery etc. for plantar fibroma View Thread
Posted by Automatic Slim on 12/18/06 at 10:16

5 weeks post cryo:

Rough week. My Fibromyalgia flared up again, very sore and tight in the knees, upper back, and both feet.

The plantar tendon on left foot was very sore, but then again I'm sure it has to be a bit more "sensatized" than anywhere else.

Having said that, I still am able to get around better than I could before cryo on the left foot.

The Fibromyalgia flare up is starting to subside a bit and the foot seems to be revovering as well as any other problem area's I have.

Result number: 105

Message Number 215151

Re: To Hope View Thread
Posted by Oma Z on 11/08/06 at 01:54

Wow, Horizontal Therapy is it! It saved my back. My back muscles were spasing out the last few days and I was in constant pain. The Program 17 - Nerve block, and Program 13, acute pain took care of me. Program one, whole body for 15 minutes sets the body up to receive electroanalgesia better. I'm sure they know what they are doing. I don't remember being in such pain for so long. I thought of the different people on this site I read about and wonder how you carry on when it is relentless. That's where the Hakomed Horizontal Therapy comes in and is truly divinely inspired. I'm thrilled for you.

Also, are you blood type O? If you are, immediately eliminate all wheat, corn and potatoes. That could be a real answer there as the proteins in those foods cause inflammation and are the biggest offenders for O blood types. They seem to have more arthritis, digestive disorders, fibromyalgia than other blood groups. I've also seen miracles happen with others and in my own family doing the blood type diet. Go to www.dadamo.com (click on food type base - the red button to check on different foods) or get "Live Right for Your Type" by Peter D'Adamo. Wheat is just a frankenfood these days. My doctor is getting that Horizontal Therapy machine. I can't sing its praises enough.

I had restless legs too. It was in my forearms and lower legs. Horizontal Therapy helped but what really took care of that was IV chelation therapy. One treatment gets rid of it for about 6 months for me. I really need to do 20 IV's but that's $160 per time. There is a company, www.detoxamin.com that you can buy chelation suppositories and it's supposed to be about 1/3 the price and just as effective. I tested for the heavy metals, lead, cadmium, Aluminum and mercury. The side benefit is it'll clean out your arteries and clear your thinking if you have brain fog. And if you're thinking of getting the flu vaccine, don't. It's still loaded with thimerosal preservative, AKA mercury. There is no safe level. They only started taking it out of vaccines in 2003, but in the meantime we have 1 in 6 children with neurological disorders in our school systems and 1 in 166 with autism. Mercury has an affinity for nervous tissue.

Let me know how it goes with the HT.

God Bless. Oma Z

Result number: 106

Message Number 215131

Re: To Hope View Thread
Posted by Linda H. on 11/07/06 at 18:17

Hope, My Name is Linda. I'd really like to talk to you.I also have
RSD/CRPD, Per. Neurophathy in hands & feet, Fibromyalgia, Arthritis, in my back, knees and Elbows, restless legs syndrome,insomnia (funny cause I sleep all day!!)Carpal tunnel in hands, Tarsal tunnel in Feet, TMJ, Trigeminal neurolgia, LOTS OF DEPRESSION & CONFUSION!!!!!! My life is so totally different than what it was 4 years ago. I'm trying a new treatment tommorrow. Horizontal Therapy. I've never contacted on internet, but your story is sooooooooo familar! Please Reply. Need to talk to someone!!

Result number: 107

Message Number 214706

Re: Night Splints? View Thread
Posted by Auntie on 11/01/06 at 11:25

AS is, from what I understand, a rheumatic condition, in the same category as rheumatoid arthritis, fibromyalgia, polymalgia rheumatica, and some other conditions. I have not actually been to a rheumatologist for a diagnosis. I had an orthopedic doc tell me that that must be what was causing my back pain because the discs and all in my back were fine. I did research on the internet and came to the conclusion that he was right. I have not been to the rheumy because I've learned that there is really not much they can do except tell you to do the things I read about on the internet, or give you horrible medications that do more damage in the long run than good. :)

But it can cause foot pain, plantar fasciitis...and back, neck, rib cage, knee and hip pain, achilles tendonitis, back stiffness, sciatica. Some have just one or two...I get to have them all. Lucky me! ;)

So if she said you don't have it, thank God... then I would just read everything on this site (Scott's heel pain booklet is very informative), try everything that seems to feel good, and keep at it. It may take months to feel a significant difference. That is discouraging, I know...it was to me also. But I finally, s l o o o w l y, turned a corner. I believe I already suggested the Waldies to you (it's hard to keep up with who I've told what on here!). Be persistent! And keep us informed on how you are doing. :)

Result number: 108

Message Number 214705

Re: Night Splints? View Thread
Posted by Auntie on 11/01/06 at 11:21

AS is, from what I understand, a rheumatic condition, in the same category as rheumatoid arthritis, fibromyalgia, polymalgia rheumatica, and some other conditions. I have not actually been to a rheumatologist for a diagnosis. I had an orthopedic doc tell me that that must be what was causing my back pain because the discs and all in my back were fine. I did research on the internet and came to the conclusion that he was right. I have not been to the rheumy because I've learned that there is really not much they can do except tell you to do the things I read about on the internet, or give you horrible medications that do more damage in the long run than good. :)

But it can cause foot pain...and back, neck, rib cage, knee and hip pain, achilles tendonitis, back stiffness. Some have just one or two...I have them all. Lucky me! ;)

So if she said you don't have it, then I would just read everything on this site (Scott's heel pain booklet is very informative), try everything that seems to feel good, and keep at it. It may take months to feel a significant difference. That is discouraging, I know...it was to me also. But I finally, s l o o o w l y, turned a corner. I believe I already suggested the Waldies to you (it's hard to keep up with who I've told what on here!). Be persistent! And keep us informed on how you are doing. :)

Result number: 109

Message Number 214704

Re: Night Splints? View Thread
Posted by Auntie on 11/01/06 at 11:18

AS is, from what I understand, a rheumatic condition, in the same category as rheumatoid arthritis, fibromyalgia, polymalgia rheumatica, and some other conditions. I have not actually been to a rheumatologist for a diagnosis. I had an orthopedic doc tell me that that must be what was causing my back pain because the discs and all in my back were fine. I did research on the internet and came to the conclusion that he was right. I have not been to the rheumy because I've learned that there is really not much they can do except tell you to do the things I read about on the internet, or give you horrible medications that do more damage in the long run than good. :)

But it can cause foot pain...and back, neck, rib cage, knee and hip pain, achilles tendonitis, back stiffness. Some have just one or two...I have them all. Lucky me! ;)

So if she said you don't have it, then I would just read everything on this site (Scott's heel pain booklet is very informative), try everything that seems to feel good, and keep at it. It may take months to feel a significant difference. That is discouraging, I know...it was to me also. But I finally, s l o o o w l y, turned a corner. I believe I already suggested the Waldies to you (it's hard to keep up with who I've told what on here!). Be persistent! And keep us informed on how you are doing. :)

Result number: 110

Message Number 214609

Re: Night Splints? View Thread
Posted by Dr. David S. Wander on 10/31/06 at 07:27

In most cases that I've seen where plantar fasciitis has been present for several years, I unfortunately have not seen it cured very often, but have seen it managed where symptoms can often be alleviated or well controlled.

Additionally, in my personal experience, when patients have "chronic" plantar fasciitis that has been present for several years and has been resistant to most if not all conservative care, there is often another underlying contributing factor such as a rheumatic disorder (fibromyalgia, polymyalgia rheumatica, Reiter's syndrome, ankylosing spondylitis, etc.), spinal problems such as a disc problem/radiculopathy, nerve entrapment, undiagnosed calcaneal stress fracture, obesity,pveruse injuries, work related overuse, or other problems that may be contributing to the chronic condition.

Result number: 111

Message Number 214524

Re: Night Splints? View Thread
Posted by Shari R on 10/29/06 at 18:39

Continuing with sports can be iffy. Nobody wants this to become chronic. There are people who are 10 years with PF on this site. I'm only 3 but its ruined my work ability. If you don't deal with it early on you will regret it. I waited way to long and didn't know a thing about it. Now $30,000. later and chronic pain, which has now ruined my knees, I am basically unemployeed and its ruining me financially. Could I get a desk job? Maybe, but I have carpet tunnel and Fibromyalgia so bad that even typing this I have to rest my arms on a pillow. I didn't have any problem with the shots, what made me worse was having surgery. IF the shots do help you, just know that they are for the inflamation and have not cured the PF and you need to take care of your feet, just as if they hurt still. I believe Dr. Wander plays soccer or something and I believe he also has PF. Not sure though.

Result number: 112

Message Number 214384

To Hope View Thread
Posted by Ralph on 10/27/06 at 10:05

Scott please excuse me posting this entire article for Hope. The
address for the article was very long and I thought it would not be successful as a link.

I really wanted her to read this article.

Hope,
Mirror therapy. I've read about this being done in VA hospitals for military people who lost limbs. I wanted to you see this article and the one about the Oxygen Chamber. Two things that you've not tried.

Maybe you could find more on these things. Even try the Mirror therapy at home. For what it's worth I post them for you.

Can looking in a mirror cure agonising pain?
By JANE FEINMANN, Daily Mail

Last updated at 09:44am on 6th June 2006

The pain in her left leg was so terrible that Suzie Knight begged her doctors to amputate it.

Two years previously she'd fallen and sprained ankle - but gradually the pain worsened until, by January 2003, it was so agonising it felt 'as though my leg was permanently stuck in a burning flame'.

The "gutsy, fit lass" from Yorkshire, a hard-working nurse practitioner who loved dancing and going to the gym, became wheelchair-bound.

The pain was so bad she couldn't eat, sleep or move; she lost two-and-a-half stone and was under constant medication, but this barely touched the pain. She couldn't bear the feel of a breeze on her ankle, let alone socks and shoes.

Yet an MRI scan had found nothing wrong with her. Doctor after doctor told her she was imagining the pain.

Suzie, 41, a mother of two, suffered depression - and it was this that finally led to her getting a diagnosis. A trainee GP treating her for the depression recognised her symptoms as reflex sympathetic dystrophy (RSD), which is also known as complex regional pain syndrome (CRPS).

Around 11,500 people in Britain are affected by RSD - it is the most severe of a group of disorders characterised by severe pain that has no detectable cause, seems out of proportion to the original injury and does not respond to painkillers.

Other conditions in this group include repetitive strain injury, fibromyalgia and chronic fatigue syndrome.

They are triggered by stress, injury or a virus, and result in symptoms, including tremors and extreme sensitivity, that can persist for years, even a lifetime.

As many as one in seven of the population is thought to be affected, but it's only recently that the medical profession has recognised these disorders - even now, patients must deal with some doctors' refusal to treat their case seriously.

A new book, Insight Into Pain And Suffering, published next week, has an introduction by Carol Black, President Royal College of Physicians, in which she criticises fellow doctors for disbelieving sufferers, saying: "This cruel, isolating and often intractable suffering has too often been the object of hasty and sometimes heartless judgments."

It was actually amputees, or rather the pain that seven out of ten of them suffer in the limb or digit that they have lost, that first helped neuroscientists in the early Nineties to begin to understand how medically unexplained pain might be understood and treated.

"Even today, many doctors will not take phantom limb pain seriously. But it's actually very logical," says Peter Halligan, Professor of Psychology at Cardiff University. "We may feel pain in the leg or ankle - but we actually experience it in the brain.

"So it should be no surprise that when you lose a leg, the pain continues."

Early studies at the University of California found that a carefully angled mirror, allowing the amputee to watch the remaining leg moving up and down while imagining that both legs were making the same movements, was able to reduce or even eradicate the phantom pain.

Five years ago, researchers at the Royal National Hospital for Rheumatic Diseases in began a series of studies at whether visual feedback from mirrors could also be used to treat medically unexplained pain.

The research showed that it worked, and now the treatment is available at the hospital as well as a growing number of physiotherapists nationwide.

So far, the therapy works only when one half of the body is affected by pain, as is the case with RSD. And it's not always successful then, especially for people who have had the symptoms for several years.

Suzie recalls arriving at the hospital and being asked by the doctor how she felt about her leg. "I told him I hated it and everything it had done to me, and that I wanted to have it amputated. He told me that I wasn't to worry, that I almost certainly had RSD and I could be helped."

She was taught to try to move both ankles together while watching her right leg in a mirror so that it appeared to be her left leg. "Early on, it was very difficult to focus. I'd pretend to play the piano with my toes while thinking hard about how well both my legs were performing."

Gradually, by repeating the exercise several times a day, the stiffness began to be released, her foot became more flexible and she was able to rotate her ankles.

"It's all about retraining the brain," says Dr Candy McCabe, one of the authors of Insight Into Pain And Suffering. "The truth is that this technique has been used for generations. Every mother knows that distracting a baby before an injection lessens the pain."

This first step allowed Suzie to tolerate a programme of physio and hydrotherapy. She got "wonderful" support from RSD-UK, a charity set up by fellow sufferer Catherine Taylor in 2000 to provide telephone counselling, information, an annual conference and, above all, mutual support from fellow members.

She was also given desensitisation training, learning to tolerate first the touch of feathers and silk, gradually building up to wearing a pair of slippers last December.

She wore her first pair of proper shoes in February - though they're flat and her much loved high-heeled boots have had to remain in the cupboard. "It's not a miracle cure," she says. "It's a long, slow haul: you start off doing everything for a couple of minutes and gradually build up.

"I've had to be persistent, positive and have had to pace myself. I used to be a whirlwind of activity, with a finger in every pie and always watching my weight.

"Now I'm a size 12, back at work but taking it much easier, and happier than ever."


Hope, A reply to this article but one that also talks about additional type of treatment.


Good article. I am getting HBOT for my RSD. I am in a pressure chamber and breath 100% pure oxgen.
So far it has helped some.
What your story says is how HBOT works. The diease centers in the brain, so flooding the brain with oxgen (right now I have some buzzing in my brain, that shows lack of oxgen) can they say help stop the RSD as it centers in the brain.
In my first 3 sessions I had ligher pressure and the buzzing left but I had to get more pressure to help the pain in my legs from the RSD.
At present I am going back to lighter pressure to try to get my brain to "Switch back" to the normal central nervous system, more or less re-setting my brain I hope.
I have had block shots and I am one of the lucky ones and have had the horrbile burning pain leave.
Now I just have to over come my weakened legs and some off the numbness in my left eye area.
Before the HBOT my entire face was numb but not now.
From what I read HBOT is low priced in the UK not like here in the states.

- John Johnson, Westminster Ca USA

Result number: 113

Message Number 213165

All-purpose good non-athletic shoe? View Thread
Posted by AliceG on 10/12/06 at 22:35

I had sesamoiditis 7+ years ago that went away, and have had PF for almost 7. The PF went away mostly. I walked barefoot on hardwood floors and walked about 30 minutes a day. Brooks Ariel, orthotics and medication/exercise for fibromyalgia helped.

Now I've got metatarsalgia from accumulated short-term overdoing it. PF has come back. I don't wear my custom birks as often as I should, and they have become a little small for my foot that has gained in size. I've also gained lots of weight, which hasn't helped.

What I want to know is: What is a good all-purpose shoe that doesn't look like an athletic shoe? I wear a lot of black pants and tan pants to work. I used to wear Brooks Addiction walkers because I could get them in black, but bought some New Balance 925's but have only worn once. Need a smaller size.

I liked the Ariel because it ran wide/deep without their insole, and fit my orthotic. I've found more sources for wide shoes, and have found that no normal width shoe works anymore.

I like deep toes - the pedorthist #2 said it would help with the metatarsalgia and it seems more comfy.

NB 1122 from pedorthist #1 - too shallow toe - felt like it might be aggravating the quasi-sesamoiditis and this is before the metatarsalgia kicked in.

I seem to have a blunt/square foot - Birkenstocks are too pointy for me. I have a high arch and pronate severely - that is confirmed by many people. I'm on my second pair of orthotics (soft) - designed for metatarsalgia instead of PF. The guy at the physical therapy office designed them before getting the prescription from the Dr. They have much less aggressive arch than the rigid one I had before.

The shoes that seem to work well for me now are the brooks ariel, PW Minor central park, and drew lori/bloom (worn only a few times). I ordered the Aravon Dane (on sale) but found the toe too shallow. Brooks Turin also too narrow/shallow.

My main question: What is a good all-purpose orthopedic shoe that will work as well as a tennis shoe?

Mainly for me, but also for others. Ugliness doesn't matter much, just whether it comes in appropriate colors to semi-match my clothing, such as black, navy, some sort of light tan/bone/white..

Any thoughts?

Thanks,
Alice

Result number: 114

Message Number 211946

Re: What worked for me..... View Thread
Posted by Shari R on 10/02/06 at 05:58

Thanks Jennifer, Alot of us here have issues with Arthritis, Fibromyalgia or Thyroid disease. I really believe that somehow the feet are related somehow to these and that it is an autoimmune disease of some sort. I'll make an appointment sometime in the future with a new Rheu. that my Endro. recommended. Shari

Result number: 115

Message Number 211242

Annm, I read your message below about having AS.....sm View Thread
Posted by Auntie on 9/25/06 at 11:29

I, too, have been told I have AS, not by a rheumatologist, but just as a casual aside from an orthopedic doc, whom I went to for back pain. When I researched it on the internet, it seemed to fit all my symptoms. But I have yet to go to a rheumatologist for an official dx.

Anyway, I have some pain in the balls of my feet also. I first noticed it when I was pregnant with my first child, 16 years ago. When I would get up in the mornings, the balls of my feet would be very painful with my first few steps, then ease up as I walked. It went away after I had the baby, but now, along with all the other foot pain I've been having, it is doing it again, only not as bad. I do a LOT of stretching and massaging of my feet every morning before I get up, and that really does help me.

About night splints...I personally use the Strassburg Sock. I initially went with it because it was cheaper than the others, but now that I've used it and read about what people go through with the other kinds, I'm glad I did. It appears to me that it is MUCH easier to sleep in than those other kinds. Softer, too. If you have not heard of it, just do a web search to get the web site address (I think it's just www.strassburgsock.com) and you can read about it. Maybe it will be better for you, that is, if you really need a night splint. I got mine for $30 (cheapest price I found anywhere) from .....argh, I'm drawing a blank here ....I think it was called Runner's Roost, in Colorado, I think. They have a web site, and I called to order it. Seems like there was no extra shipping charge at that price, also. Anyway, it helps me...I have less stretching to do in the mornings when I wear it. Also, some of the docs here recommend just wearing your night splint for an hour or so in the evenings, while watching TV or reading, and then putting it on about 30 minutes before you get up in the morning. They say that will do as well as wearing it all night. I haven't decided, according to my experience, if that's true or not...need to do more "research". :)

I really feel for you about the AS...I haven't had the eye problems (thank God), but I have back, neck, knee, rib, hip, and foot pain. I also have bouts of sciatica, and when I do, my foot pain is worse. I think I also have some fibromyalgia or something similar, because my muscles are always sore and I have those painful spots they talk about. But all in all, I do ok. I have not had any fusion of joints that I know of, and am still fairly flexible. When I think back over my life, I realize that it started in my early 20s.

Have you been to the AS site? They have a message board for support, also. There are two that I know of, actually...one is spondylitis.org, I think, and the other one is something about kickas...don't know if it's .com or .org.

When I first started posting here about my foot pain, I didn't realize that it was a symptom of AS. Some of the things mentioned here help, but some don't, because the nature of the pain is different...comes from a different source, I guess you'd say. So, while the docs here are great with PF, with us the situation is a little more complicated and kind of out of their "area". I don't want to be insulting at all...they've been very helpful to me. But they are podiatrists, not rheumatologists. I guess what I'm trying to say is, don't expect them to have all the answers to your questions.

Check out the Insoles/Shoes board for great discussions about shoes to wear for foot pain. The pedorthists there are really helpful. I personally used the powersteps for a long while...they helped at first, because I think I really did have some PF (at that time) in addition to the AS, but here lately they are causing me pain instead of relieving it. So I've been searching high and low for some shoes that work...Jeremy recommended the Keen brand, and I tried some on Saturday. You can read about my experience on the Shoe board. (I'm on my way over there now, if nothing interrupts me!)

Something just interrrupted me...but I'll get it on there sometime today!

Result number: 116

Message Number 210696

Re: Plantar Fasciitis causing Nerve Entrapment View Thread
Posted by aphs on 9/19/06 at 22:36

I had a plantar fasciotomy. my podiatric sx is pretty good! However at the same time,I had a TAL.Weight bearing was restricted for atleast (8) weeks. Heeling took even longer D/T being a NIDDM patient and a fall while in the re-hab center (3) dys post -op. I was in rehab for (28) dys!!!!! I heard from my podiatric-surgeon and other clients, while in re-hab ctr, that if you are off feet or non weight-bearing after a plantar fasciotomy it can cause acessive scar tissue and affect the Baxter Nerve. Is this true? I'm having so much pain in my foot, that it is unbearable!!! My Neurologist has ordered an EMG/NCV for my LLE. I also have a HX of L3-4 and S1 herniated dics as well as spinal stenosis,C2-7 bulging discs and a small C3&4 herniated disc. Much more health issues but I've included chronic conditions R/T my L-S and C-S. Why would a Neurologist be interested in R/O Baxter's Nerve Neuritis? My complaints at this office mainly is lumber and cervical pain. I also have OA over 80% of my body and Fibromyalgia. Coming up with a possible new diagnosis can be discouraging, especially since I'm having and have been having severe chronic foot pain, burning and tingling! How could knowing if I have this aid/and or add to my plan of treatment? (BAXTER NEURITIS)

Result number: 117

Message Number 210237

Re: Pain-relapse / possibly due to travel View Thread
Posted by kris on 9/14/06 at 02:07

I have tarsal tunnel and an osteochondral defect. I developed really bad fibromyalgia also. Driving would just kill me.

I started keeping a journal to help ID my triggers and I found out that driving was one of them - the longer the trip, the worse the pain - both foot pain and body pain.

One day - on a very short 3 mile trip to take my son to a local creek to swim in - we got behind an asphalt truck. I'd been feeling great all week - had stayed at home up to that point. IN 10 minutes behind that thing, I HURT - headache, foot hurting terribly - all my muscles - like every nerve in my body hurt.

So I have had trouble in the past with petroleum type things - like paint thinner, polyurethane. Then I had another week - stayed home, no driving - and while I took a nap my husband had an incident with an old lamp he brought in and some wasp. He ran to wal-mart and got some wasp spray.

I was in the back bedroom with no idea what was going on, just know all at once I woke up SICK - stomach sick, head ache, hurting terribly - so bad I was just crying and couldn't really hardly get up. We looked at the can - petroleum distillates.

I've avoided the road and pumping gas and stuff like that for a while now and I am doing better. Not saying it CAUSED my problems - but it sure did make them POP out full blown.

Result number: 118
Searching file 20

Message Number 209145

Treadmills View Thread
Posted by sandy g on 9/03/06 at 12:57

Hi ....I have fibromyalgia and my feet finally recovered by the trauma caused by hard orthotics.(i now wear Dr. Kipers SDO's). This Summer, for 3 months i had been walking outside, between 3-4 miles. Most of the distance is relatively flat but i would say that about 1/4 to 1/3 distance is hills. I finish the this distance in one hours...sometimes a bit less...but never more.

The other day, it was raining, did not feel like going to the gym..so i decided to use my Proform treadmill. After about 5 minutes at 3mph i slowly increased my speed to 4mph. Most of my walking was flat, i did increase the incline slightly for about 10 min.

During my 3rd mile i started to feel some arch discomfort on inside right foot near the tarsal tunnel area....the discomfort would come and go. I finished 3 miles (about 45 min.) About one hour later the discomfort in my arch increased. It took about 2 days for the pain to disappear (could not wear Kipers SDO's during this time).

I have heard that treadmills can cause feet problems. I cannot understand what factors let to my pain. Why can i walk outside for hours on end...up and down hills...feel great...but yet experience foot pain on the treadmill? Do you think speed was a factor? I do not hold on the handrails. In fact, my treadmill has arms that move forward and backward...i do use them intermittingly.

Its a mystery to me? Any thoughts would be welcome.

Thank yu for your time,

sandy

Result number: 119

Message Number 209120

Re: my arms... View Thread
Posted by Shari R on 9/03/06 at 07:38

I know how you feel with the pain in your arms. Maybe its tendenitis and/or a combination of CTS, or maybe its the Fibromyalgia. I have to use a pillow to rest my arms on to type on the computer because of the pain in my arms and hands.

Result number: 120

Message Number 209100

Re: Tarsal Tunnel NCV View Thread
Posted by EllenR on 9/02/06 at 19:18

Thanks you Elizabeth. As a matter of fact, my neurologist is a speaker for Lyrica, but I have already been on Neurotin (which he claims is the same class of meds) so he just increased my dosage to 1200mg/day. PacifiCare does not really cover the newer meds either, bummer.

I have Fibromyalgia and my I just met a woman who heads up a support group for FM, she got me thinking that maybe Fibro is really a condtion called tethered spinal cord. This condition can cause a host of problems, many of which I have, carpal tunnel,. ulnar nerve entrapment, tendonitis both lateral and medial on both elbows, cervical disc disease and a labral tear in my shoulder. If I were a horse they would have shot me long ago. I was waiting for Workers Comp, but that's getting old so I want to start doing some surgeries, now this foot problem is the most puzzling...Do you have other conditions too?

Result number: 121

Message Number 208140

Re: tomorrow's the day View Thread
Posted by Joey on 8/22/06 at 15:24

with all those problems i would suspect fibromyalgia

look up dr. st. amand on the google or some other search engine to learn about guaifenesin

Result number: 122

Message Number 208025

Re: tomorrow's the day View Thread
Posted by Shari R on 8/21/06 at 07:04

I'm sure you'll be in bed for a couple of days, but I hope your surgery went well today and you'll have a full and complete recovery. I've been tested and retested in the last couple of weeks for my Thyroid. I already knew my TSH was off and was diagnosed with Thyroid disease almost 2 years ago. No meds. so far. My GP who insisted on the tests will be back later this week and I'll get his opinion. I do have an appointment with the Endro. on the 28th so we'll see what he also thinks. I'm totally convinced that all my feet, knees, arms, hands, back and hip are all somehow related. Is it really Fibromyalgia or is it the Thyroid disease causing all these problems.

Result number: 123

Message Number 207684

Re: Lisa, psoriasis is an arthritic condition.... View Thread
Posted by Kathy G on 8/18/06 at 09:48


Auntie,

My life has been a bit hectic and I never had a chance to reply to your post. I believe that certain body types seem to be more apt to get PF but I could be all wrong. This is based on my own, very unscientific study. Nearly everyone I've met with PF has some other type of muscular or bone problem, be it a bad back, chronic muscle spasms, arthrtis, fibromyalgia and similar ailments.

I don't know as there's any link between it and OA (osteoarthritis) or RA (rheumatoid arhtritis) but there are many studies going on regarding these ailments, and they might find out there is. I know, myself, that I was believed to have sero-negative RA and Ankylosing Spondylitis. I kept telling the doctors they were wrong and so far, it seems I was right, thank goodness. I do, however, have severe OA and it's very agressive.. And I have other auto immune disorders such as fibromyalgia, mild IBS, Reyes Syndrome and pernicious anemia. So there has to be a definite link, in my strange body, between them all.

Personally, I think my chiropractor had it right when he diagnosed me with "Kathyitis." He said it was a shame the insurance company wouldn't accept that as a diagnosis code because it best described me. :D

Keep us posted on the outcome of your test. We really care!

Result number: 124

Message Number 207351

I get SO tired of wearing shoes!!! View Thread
Posted by Auntie on 8/15/06 at 10:54

I agree with you in part...I believe if we had grown up walking barefoot everywhere, we wouldn't be having this problem, and we definitely need to do strengthening exercises to combat it. I'm doing the "towel scrunch" one, only I'm not using a towel, just digging my toes into the carpet. I do it about 70-80 at a time, first thing in the morning and whenever I'm sitting down during the day.

BTW, I stretch my calves and achilles tendons, but (to anyone) what exactly are the hamstrings? I'm not sure if I'm stretching those. :)

As for orthotics...right now I have to have them. (Powersteps) Anytime I wear dress shoes to church (approx. 2-3 hours), it really aggravates my feet. I only have ONE pair of shoes I can wear (Skechers Bikers Straightaway with insoles removed and Powersteps inserted), and I get REALLY tired of them. I do walk barefoot some during the day, but only on the carpet, which is really thick and feels good to my feet. It's uncomfortable to walk barefoot on the kitchen or bathroom floors (which I do occasionally anyway because I don't want to put on shoes just to get a drink of water or pee), but my mom says she can't walk barefoot on a hard floor either, and she has never had foot trouble. That's just part of aging...we lose some fat padding on the bottoms of our feet as we get older.

Someone mentioned arthritis...I posted a message about arthritis and foot pain on the Social Board about a week ago. Some of you may never go there (it's weird!), but if you have arthritis or fibromyalgia or some such condition, go over there and put your two cents' worth in. (Resist the urge to respond to the weirdo.) :)

I realize doctors have their limitations, and there are some really awful ones, but there are some really good ones, also. The ones who post here seem to really care about helping people and I am very appreciative of them. (My urologist is a jewel, too!)

Result number: 125

Message Number 206998

I noticed several people mentioning having arthritis, and I wanted to mention something.... View Thread
Posted by Auntie on 8/11/06 at 10:58

I've been reading about lately....antibiotic therapy for rheumatoid arthritis. I was looking into it because I supposedly have Ankylosing Spondylitis, which is a rheumatoid condition. Also related to RA are Fibromyalgia (I think I have some-o-dat, too), Chronic Fatigue Syndrome, Psoriasis, and some other things, can't remember.

Anyway, I'm wondering if any of you have RA or a related condition, are under the care of a rhuematologist, and have tried antibiotic therapy for it. I would like to hear all about it. People with AS are very prone to have foot problems, I've read, so I thought there may be some others here who have rheumatoid arthritis problems. I'm thinking this may be the clue to why I'm having such a hard time getting anything to work on my foot pain.

Result number: 126

Message Number 206699

Re: Walked for the first time in 9 weeks View Thread
Posted by Meg S on 8/08/06 at 12:39

Kathy,
Thank you for the message. Actually, I remembered your post about your cast problem and that is why I called the Dr. directly! Interesting how your words can help those you don't know and are remembered.

Yes, I am a teacher. I am a high school librarian and have the joy of working with students 9-12 grade. It is the best job - most days it doesn't even feel like a job. My favorite time besides book talking is teaching current research strategies and using the internet safely and efficiently.
My library is huge and beautiful thus the need for a scooter as the floors are cement under a thin layer of carpeting. It's a backup but I anticipate I may use it more than I think.

Glad to hear that your surgery and recovery are going so well.

Visit the state of Washington when you can. It is beautiful! I was raised in the wheat fields on the East Side and now live on the West Side with the trees and water. We have had an unusually hot (like everyone else) summer but I've enjoyed it.

Fred and Ginger send greetings...and yes, my children say I am gutsy. I think if you live with Fibromyalgia for over 15 years and then add the TTS and OA you have to make the decision each day to stay positive and live life to its fullest. And when you can't stay positive then set a time limit to be as miserable as you want because it becomes boring really quickly.

Stay well.

Result number: 127

Message Number 205035

Re: On and off days View Thread
Posted by Auntie on 7/22/06 at 11:28

I don't mind you "butting in" at all! I'm always glad to hear what anyone has to say about their experiences. It may be just what I (or someone else) need to hear to get the help they need.

Yesterday I used the ball again when I'd been standing a while and my feet were hurting, but I did it gently instead of pressing down hard like I was doing. It always gives some temporary relief, helps me get up again and do what has to be done. My feet weren't real tender this morning, either. But I'm going to try the deep massage again, probably tomorrow afternoon, not today, since I have to get up in the morning and get ready for church. Monday morning I can be slow about getting up!

I just hope that I really am breaking up some scar tissue with the deep pressure, not just making me sore for no reason. With me having AS and possibly a little fibromyalgia, sore muscles are a constant.

Result number: 128

Message Number 204412

Re: to sandy: View Thread
Posted by sandy g on 7/17/06 at 11:01

Hi stephanie,

I went to the Dellon Institute in Brookline Ma. right outside Boston, Ma. I was seen by a Dr. Hung. No i did not have a positive tinel sign, and no i did not have tests at the institute. Dr. Hung used an instrument (test similar to PSSD test) to test for my nerve reflexes and found negative results. Her diagnosis: no nerve entrapment. The only way she was able to explain my burning, tingling, sensations was to state that i was in the early stages of peripheral neuropathy. She knew i had fibro (even knows my fibro doc) but she did not connect the dots.....meaning she did not think my dreadfull burning symptoms at the bottom of both feet had anything to do with fibromyalgia. She was dead wrong.

Result number: 129

Message Number 204233

Re: posting again about exercise and tts View Thread
Posted by sandy g on 7/15/06 at 11:56

Hi Stephanie....Sorry about your son's bilateral TTS. Just want to state that i was dx. with fibro in 1987. I thought my recent (august 2005) diagnosis of Medial Calcaneal Nerve entrapment (a close cousin to TTS) was just that. However i have come to find out that fibromyalgia mimics many of the symptoms of TTS. However what bothers me about your post was your statement about the fibro doc indicating that TTS could be fibro secondary to the swollen tendons. There is no swelling in Fibro....so i am a bit confused...........sandy

Result number: 130

Message Number 203366

For me Waldies better than Crocs View Thread
Posted by sandy g on 7/08/06 at 12:21

Hy Guys.....Just want to let you know after 2 pairs of crocs i decided to try a pair of Waldies. Waldies wins! Significantly softer. I do have fibromyalgia, Pf, and history of neuropathic (nerve pain related to fibro) feet pain. I would definitely recommend Waldies for those fibro people with heel tenderness...........sandy

Result number: 131

Message Number 202975

Re: Pain In Arch Always Constant!!! View Thread
Posted by Robbie on 7/04/06 at 13:16

Michael, Working is really hard. Everyday before I get out of bed I have to say a prayer that I will have strength to make it through the day with the pain and my challenge is to have a positive attitude despite the pain. The one thing I do every day is try not to think beyond the current day or I get too overwhelmed and upset. I really have to work so I try not to think about another option. I have a desk job and can limit getting up during the day, but can't escape the pain when sitting.

The doctors all thought it was PF at first, then a nerve thing since i have pain all the time, now they are saying after all the tests there really isn't anything wrong with me that they can find and I've pretty much been fired by all the doctors I've gone to or I give up on them. I keep going though to different ones. there has to be an explanation for all of the pain. My recent diagnosis is fibromyalgia. I only have pain in the feet and occasionally in the ankles so I'm not sure about that. I am 28 years old. How old are you? I've pretty much had my entire body MRIed, enough blood taken to support the red cross for a year, and nerve conduction studies. I've gone through physical therapy twice, several chiropractors, ART and Graston by two different people, and my latest is massage therapy - specifically myofascial release. Nothing has made a dent in the pain. And the thing that seems to stump everyone is the pain when at rest, even during the middle of the night. Even if nothing works, at the end of the day I want to be able to say I tried my best to get rid of this.

I am really trying hard at a positive attitude to deal with the pain, I say I succeed with that about 10% of the time....ha! I used to be an extremely active person, like most of the people here, and now I don't do anything but go to work and come home. I don't even contribute much around the house. Driving is awful, but I do it b/c I have to. I just wish I could escape the pain even when sitting, that is the hardest for me - it always being there. I feel like I am constantly consumed with pain and I hate it. My life isn't how I thought it would be and I sense you feel the same about yours. I ask my husband every day, how am I supposed to live my life with all of this pain when I am only 28 years old. I think the answer is you just do until you find a way out of it. Life isn't fair or equally distributed, it's important to know that but not dwell on it. I feel for you b/c I know where you are. I have read several of your posts and wish I had some advice for you or myself! Please hang in there. Just think what strength of character you will have when you get through all of this!!!

Result number: 132

Message Number 202902

Re: Can I be annoying and ask another question please? View Thread
Posted by MariaM on 7/03/06 at 19:18

Thank you Stephanie! I asked my doctor if there could be anything that would make my tendons swell besides overuse and he said yes. We are trying the route of doing absoloutely no activities that aggrivate my TTS first since my flare-ups seem to mostly follow that pattern. I really appreciate your suggestion. Deep down I really think there is something behind why I cannot kick this tendinitis other than just plain overuse. I am an athlete and I know my body well...I also know when something isn't right.

I am going to google fibromyalgia right now and read up on it.

Can you tell me a bit about your son, his lifestyle, and how his TTS started and what it is like now? Is his story similar to mine? Thank you!!!

Result number: 133

Message Number 202894

Re: Can I be annoying and ask another question please? View Thread
Posted by stephanie a. on 7/03/06 at 17:22

to Maria . i do not have TTs but my son does and he also has fibromyalgia and that can swell tendons and ligaments so i would go to a rumotologist and see if you have this disease becasue if you do then google fibrosupport dr. st. amand. i have no interest in this except that i wish to see you get well.

Result number: 134

Message Number 202400

Re: Fibromyalgia Victims - this works for me View Thread
Posted by TerryB on 6/28/06 at 14:25

I have been using this product called Fibromya and it works. Works fast too, in about a week I noticed a huge difference in my FM. I'm off the pain killers. Fibromya contains BioEnhanced extraction of Daisy leaves, grape leaves, olive pit, pineapple fruit and almond powder and orange juice powder. This in my opinion, works as well as prescriptions and it's all natural.

Result number: 135

Message Number 202398

Re: Fibromyalgia Victims View Thread
Posted by Ralph on 6/28/06 at 13:59

Thanks for the information you shared. Maybe others had the same experience that you had aching all the time and thinking it was normal. Perhaps that's why we didn't hear about this condition in the past sooo much.

I'm glad you have treatment. I only know one person that was diagnosed with Fibro my wife's best friend. I can't really remember when or how she got it but I do remember one day her telling us that she slept all day and felt tired all the time.

Being healthy all her life this condition really changed things for her. At the time she was completeing her masters degree. I just remember her husband telling me how difficult her fatigue made everything.

I don't remember him saying that she had been injured or anything. It just seemed to appear out of no where.

Today she is better, but continues to have both good and bad days. According to my wife she has tried many different medications over the years.

I don't know any men that have it.

Result number: 136

Message Number 202391

Re: Fibromyalgia Victims View Thread
Posted by kathy g on 6/28/06 at 12:38


Ralph,

I don't want to anger anyone here so I hope that they all read my words carefully. Many of the people I personally know, who suffer from Fybromyalgia, are somewhat neurotic and border on hypochondria. That being said, it may be that the condition itself has made them that way since it is so hard to diagnose and only recently became a recognized medical condition. Before this, people who suffered from it were told that their symptoms were all in their heads and dismissed by many doctors. Or it may be that the people I've met are coincidentally all of the same personality type.

I have been diagnosed with it but I don't go around saying I have it. In my case, my stupidity served me well. I didn't know that other people didn't ache all the time the way I have since I was a kid so I never mentioned it to the doctors. And saying it's fibromyalgia just gives a name to something I have always considered the norm. Of course, I don't have any of the symptoms except for the aching so I don't have classic fibro so I am fortunate.

There are some treatments for it. Many doctors believe that low doses of Amitriptyline can be beneficial. Others believe that being on an antidepressant helps. It's a disease that can be severe or slight so the treatment depends on the severity of it. It's just helped many people to actually be told their symptoms are real and not in their heads.

No, there are no known cures and it can rear its ugly head spasmodically or be present all the time. No one knows the cause and it may be that there's a hormonal link.

Result number: 137

Message Number 202385

Re: Fibromyalgia Victims View Thread
Posted by Ralph on 6/28/06 at 12:11

Depression can and also produces similar symptoms especially being tired all the time. So how do doctors tell the difference between depression and Fibro. Fibro
people are saying depression medications are their physicians drug of choice.

Posters that have been diagnosed with Fibro what type of doctor do you think is the best one to see? Who becomes your treating physician for this condition.

Is it possible that in the old days when women were told their aches and pains were in their heads new docs and modern medicine came up with the name Fibro and ordered anti-depressants rather than send them home with nothing.

Many people now are given this diagnosis. I just hope they are receiving the correct treatment. Does it ever go into remission or just go away?

Result number: 138

Message Number 202370

Re: Fibromyalgia Victims View Thread
Posted by cel on 6/28/06 at 09:59

I recently had a thyroid test and it came out negative, but I didn't ask if it was a THS, T4 or T3. I'm with wonderful Kaiser so I'm sure they gave me the most basic test. I'm taking my Amytriptaline again and it helps me sleep. I just hate how I feel in the morning. I'm dra-a-a-a-gging my feet at work this morning. I just want to close my office door and sleep some more! =(

Result number: 139

Message Number 202328

Re: Fibromyalgia Victims View Thread
Posted by john h on 6/27/06 at 19:11

Meg: My vet sure is smart as my kitties thyroid operation was $500. Brought her home the next morning. Glad she did not need a kidney transplant. What is one to do? I find that Vets charges for an office visit cost are well above what medicare will pay for a person and I doubt they have 1/10th the cost of insurance MD's have. I was reading many well qualified people are going into the field of VM as opposed to MD due to problems in the human medical field. I also have read it is now harder to get into a vet school than medical school. Dr. Z you may have missed your calling for the really big $$$! You could have been sort of like Jane Goodall or specialized in dog and cat feet. We now have pet psychiatrist so why not pet feet?

Result number: 140

Message Number 202326

Re: Fibromyalgia Victims View Thread
Posted by Meg S on 6/27/06 at 18:24

Cel,
I would recommend that you read Thyroid Power a book that speaks to the correlation between hormones- thyroid - fibromyalgia I am not convinced that hormones have anything to do with fibro but am convinced they certainly have a great deal to do with thyroid function. The thyroid effects all systems of the body. Mary Shomon also has a website that I found informative.
John - pleased your cat is doing well. Smart vet!

Result number: 141

Message Number 202319

Re: Fibromyalgia Victims View Thread
Posted by cel on 6/27/06 at 17:27

What's weird is that fibro affects mostly women. I mean, can it be a hormonal thing?? I was diagnosed with by after a car accident. I told the doctor that I was always tired and in pain. He poked around, by my chest, the sides of my arms, all other trigger points he can think of and that was it. That was my diagnosis. He gave me anti-depressants and no literature and basically told me that I will feel better after the meds. I refused to take them because I wasn't feeling depressed and I didn't want to rely on drugs. Ironically I was also diagnosed with PF during the same time.

There is a recent study on a medicine called EFFEXOR in which I was asked to be a part of a study. I was to take doses four times a day, but the risks were to many so I declined the offer. Imagine being part of the research and I wind up getting a seizure, a heart attack or even feeling greater pain than I am now? I might as well croak. Thanks for the replies. I appreciate it.

Result number: 142

Message Number 202287

Re: Fibromyalgia Victims View Thread
Posted by john h on 6/27/06 at 12:45

Thyroid problems can also be the cause of anxiety. If one suffers from this a Doctor should rountinely perform a simple thyroid blood test.

For about 6 months one of my cats had been acting strangely and losing weight. The vet did a blood test and her thyroid level was about 10 times higher than it should be. Part of her thyroid was removed and she immediately became the same old kitty she once was.

Result number: 143

Message Number 202281

Re: Fibromyalgia Victims View Thread
Posted by Meg S on 6/27/06 at 12:36

There is a new treatment that was okayed less then a year ago. I take the milder form of the medication as it was too strong for me. The one I take is called Amantadine. John h is correct with the guidelines that should be followed for diagnosis. I would also like to suggest a detailed thyroid exam with THS, T4 and T3 being tested. When my Hashimoto's hypothyroidism was discovered 5 years ago and treatment begun 50% of my symtoms of fibro went away and now with the Amantadine another 25% are in remission. After having fibro for 15 years I am telling you to look for a Dr. who doesn't lump everything under "fibro". but look for an explanation of why you have the symptoms. I was lucky in finding one who thinks outside the box and therefore looked at my thyroid and then foot situation as different issues. It has helped me in that he believes in sending me to experts that he believies can help. Many "unexplained symtoms are now being garbage canned under fibro thus causing controvery.

Good luck to you - there are answers, just be your own advocate, be educated and be persistent.

Result number: 144

Message Number 202268

Re: Fibromyalgia Victims View Thread
Posted by john h on 6/27/06 at 09:58

Ralph: Fibromyalgia is a condition that causes widespread pain over the body especially in the muscles. It does not damage the muscles. There is disagreement on how to diagnose it. Some say if you have 18 specific pain points on your body. It can cause anxiety, depression, lack of sleep, extreme tiredness and muscle pain. Of course, these same symptoms can exist just with depression or extreme anxiety. There is no know treatment other than treating the symptoms. There is no known cause. It is a controversial disease.

Result number: 145

Message Number 202267

Re: Fibromyalgia Victims View Thread
Posted by Ralph on 6/27/06 at 09:47

I know a lot of people have Fibromyalgia but I don't know how a doctor determines that a patient has this condition.

Can you tell me how your doctor determined you had this condition. This condition has sure come on strong. I don't remember hearing this word when I was a kid.

What's with Fibromyalgia, who gets it and how is it diagnosed. Do they know why there are soooo many people that have it?

Result number: 146

Message Number 202239

Fibromyalgia Victims View Thread
Posted by cel on 6/26/06 at 22:13

My Fibromyalgia has kicked in a lot stronger this year. Is anyone feeling the same way? Just curious to know if anyone has purchased supplements to alleviate fibro. Some web sites are advertising supplements created by doctors, but I'm too scared to pay $100 for one bottle! Also, I was recently referred to a rheumatologist and not a neurologist for my fibro. The dude basically poked around my legs, back, and chest and was dumbfounded and didn't know what to do. Gave me some pills and told me to see him four weeks later. Idiot!

Now I've been diagnosed with tendonitis in both knees. So I'm 36 this year with lumbar scoliosis, fibromyalgia, plantar fasciitis and now knee tendonitis. I've just been taking a tumble and my doctor is now ruling every stupid little thing or pain I have as, "Oh, it's the fibro doig that." So he doesn't refer me to any specialist anymore. Now I feel like an 80 year old. Let's hear it for the OLD BAG! Can I get a hip, hip hurray!!!

Result number: 147

Message Number 201973

Re: Foot Surgery View Thread
Posted by Meg S on 6/23/06 at 22:09

Laying here with my foot elevated, with ice, knowing I will not "walk" for the next 4 weeks, with a foot swollen 3 times it's normal size, and in pain - I have chosen to still answer your question seriously.
No, you do not want surgery~however, if you are serious about the tripping (I used to trip over dust), I would suggest that you see a muscularskelatal-specialist and or neuro. It may be that you have the start of PN, fibromyalgia, or other reason.
In case you think you are just being funny and posting as a lark = shame on you. May you never feel true foot pain.

Result number: 148

Message Number 201781

Is bilateral TTS rare? View Thread
Posted by Kris on 6/22/06 at 13:56

My doctor seems to think it is very rare to have bilateral TTS, but I've got SOMETHING going on with my right foot now.

Also, I want to know if it is possible for fibromyalgia to mimic TTS or PF symptoms.

(I see a lot of women on the fibro board complaining of trouble walking and it often sounds like tts or pf to me.)

Thanks!

Result number: 149

Message Number 201155

Re: had eswt View Thread
Posted by Dr. David S. Wander on 6/14/06 at 18:06

Since in my experience, it is unusual for ESWT to "fail" bilaterally, and it is also unusual for a doctor to give a corticosteroid injection this early in the post ESWT phase, I have a few questions.

Prior to ESWT, did your doctor rule out any other causes of your heel pain such as collagen disorders, rheumatic disorders, fibromyalgia, etc. Were any blood tests performed or did you have any MRI's to rule out any partial tears of the plantar fascia, etc.?

I am certainly NOT trying to scare you into having any arthritic disorder, but when patients have bilateral heel pain that has failed conservative therapy, including ESWT some arthritic/rheumatic disorders must be ruled out and/or considered. It is highly unlikely that an MRI would reveal a partial tear or stress fracture bilaterally, but some arthritic/rheumatic disorders do present with unique MRI findings.

I have not examined you, nor do I have any information regarding your medical history. Your doctor may have already considered these diagnoses, but if he/she hasn't, you may want to discuss these possibilities.

Whenever someone isn't responding, sometimes you've got to look outside the box.

Result number: 150

Message Number 200600

Re: Does pain go away for a while then come back? View Thread
Posted by Shari R on 6/07/06 at 19:07

Hi, This is my honest opinion, I don't think that after you've gone cronic it will ever end. Never! Maybe I'm being a pesimist but I don't see an end to this after all these years. I think there's something about the tightness of the muscles and ligaments that just won't get back to normal.I still wonder if Fibromyalgia has anything to do with it for some of us. It seems that within a couple of years all of my muscles are resisting everything. Its certainly not due to lack of working out in the past. I still do a bit of swimming but that usually aggrivates my hands and arms and after the last swim it also made my feet and knees worse. Whatever!...Sorry, that sounds like I need some cheese with my wine!.....Shari

Result number: 151

Message Number 200242

Re: Wondering View Thread
Posted by Shari R on 6/02/06 at 13:58

I've been off work for 5 months, and a good share of the time I'm in bed. Are my feet better? Nope.....maybe even worse. I have to have a job by next month and I can't even stand the pain of cleaning my house. You try and talk yourself into doing something but your feet are trobbing and you just stay in bed. I have to admit I haven't been doing the night splints because I can't take the heat. Hot flashes are bad enough but the heat around my feet and lets is to much. With the issue of Fibromyalgia that just makes it worse. I had to plant some flowers which took a couple of hours and then spent a day and a half in bed. It sucks. I did go off the painkillers because they really didn't help and they made me sleepy. I do like aleve. I'm trying to stay positive though. There are people out there who don't even have feet or legs and so many are worse off than me. Shari

Result number: 152
Searching file 19

Message Number 199412

Re: Feel Like Ending It So Much Pain View Thread
Posted by Shari R on 5/19/06 at 08:29

Michael, I know exactly what you mean when you say that no one around you knows how bad your pain is. We look normal so we must feel normal. Could you at least let us know what area you live in. There are people from all over the world on this site who suffer just as we do and maybe we can find you the right place to go. My fear about you taking Oxycotin is the effect it has on your emotions. I've seen what it does to people. Are you on antidepressants? Do you keep up with any one program, night splints, icing, etc. Are you able to work? Do you have any other health issues. For me I found out I had Fibromyalgia & that may be part of why I'm moving at a slow pace. Tell us about yourself. Just know we care, and we do feel the pain. Shari

Result number: 153

Message Number 199376

Re: Off to Holland again soon for 2nd course of Aqua Tilis...any questions? View Thread
Posted by Bambi/Helen Tap4TTS.co.uk on 5/18/06 at 18:30

It's hard because so many symptoms of different conditions cross over. I do not think I have Fibromyalgia but thank you, I will ask my specialists I am seeing. And yes I do have RSD/CRPS type II. More labels still no cure lol.

Result number: 154

Message Number 199300

Re: Update on recovery View Thread
Posted by Babe on 5/17/06 at 21:15

Wow your story sounds interesting I would like to hear it from the beginning. I'm behind just happen to pull this message up. I also have had fibromyalgia mentioned by doctors but not diagnosed. I don't know how you feel about psychics but I heard one on tv say have your thyroid checked if you are diagnosed with fibromyalgia. I haven't had mine checked because this message just reminded me of it. I'm so desperate WHY NOT? I even wondered about hormones having something to do with PF, all this pain from back to hip knee then wham! foot. Vitamin defficiency? Chemical inbalances of some kind? Makes me want to be a researcher. I noticed I don't sleep well and my muscles never seem to relax. I take a mild dose of Lexapro since a death in the family but I have gone without it and felt ok but when my foot pain got so bad I started taking it again. I get depressed from hurting all the time. I want to do alot but my body won't let me. Glad you got helped!

Result number: 155

Message Number 199293

Re: Update on recovery View Thread
Posted by place on 5/17/06 at 19:35

SA,

I have had it for 4 years, and had shockwave and regular surgery. My recovery was in two phases. I went to see DR. Sandell (search past messages, there a ton of messages on Dr. Sandell) and he did some type of massage and that got me to about 40-50% better. But if I over did it, I would still have a flair up.
That was 18mt ago. Then in April I got diagnosed with Fibromyalgia. I really think the typical protocol of stretching works for typical PF but for people like me, I could not stretch because neurologically my brain would not let go of a contraction in my calf’s. It not a full contraction, I just have these knots all over my calf's. My rheumatologist gave me the noritriptyline for the night time sleeping and to reduce the pain. But the funny thing was a Pod, from Ohio State University wanted to give me this stuff for the pain too but I did not want to take it because it was an anti-depressant drug. I was thinking, I am just fine and I did not want to mess with my chemicals. That was a mistake; I could have had one more year back.

My GP gave me the stuff to spray on my legs. I just spray it on the skin while I stretch, it total works. I really thought it sounded nuts, but I guess PT’s do it for people with fibromyalgia and other muscle cramping issues. This more than anything I think will help all those who have tried everything like I did.

Good luck!

Result number: 156

Message Number 199291

Re: Feel Like Ending It So Much Pain View Thread
Posted by Shari R on 5/17/06 at 18:56

Michael, Please know there are so many of us out there living in cronic pain. Yesterday I cried for about 2 hours. I have no desire to do anything. I haven't worked in months and my house never gets cleaned......ok some, but next to never. Why?.......Pain.....it gets to you. I spend more time in bed then anywhere else. Have you gone to a specialist for cronic pain? I know exactly how you feel. Occasionally I have a good day where I can do something. I have to start looking seriously for a job soon but don't know what to do.
Please find a support group or a friend or family member that can be with you when you're really down. Have you tried antidepressents. They help me alot. I just went off mine because I'm trying to find the reason for my 2 months of nausea. I also have Fibromyalgia. I feel like I have the flu all the time. I'm not sure if thats from the FM or maybe I'm pregnant at 51. LOL.......Anyhow, please stay on this website. There are so many people here who are right there with you and want to be your friend. It does help to be a female though, I can cry and thats when my husband feels bad, otherwise he's kind of sick of the whole bed thing and the not clean house. If you want to cry go for it, it does help....Watch Oprah, I cry almost everyday watching that. Check out Helens(Bambi)website. She's on here all the time. She's so young and I believe she has pictures of her feet. She seems to have a pretty good attitude for someone her age and the condition she's in.
Just stay with us. And if you're not on antidepressents or you don't believe in them, get on them......I swear they will help. Sometimes it takes awhile to find the right one but do it. They don't take away the pain but they help with the depression bigtime. When I read your message I started crying because I feel so badly for you and I don't want you to give up. I won't either. I was up almost all day today, only 3 hours in bed. Thats good for me. This is funny..so laugh.....I had a rootcanel a couple of days ago, and got 3 prescriptions for the pain if I needed it. Today I had the pain and I was actually out to lunch with a friend. So I took two of the pills that said for break through pain. Then I went grocery shopping. I was so HIGH, not realizing that you're not suppose to drive etc. after you take these meds that I bought everything in sight, and that was right after I had lunch. I kept thinking geeze I feel good. I called the Dentist when I got home cause I was still confused about what order to take the meds. and told him when I took the pills and what I did after. His voice changed & he said "you can't drive on that, you can't even light your stove,people conk out when they take these pills" I thought it was really funny cause I truely was high on the pills. So I did crawl in bed. Did you laugh a little? Stay in touch, anytime. ... Shari ....and do NOT end it. We'll help in anyway possible. And believe me I know your pain.

Result number: 157

Message Number 199008

Re: Off to Holland again soon for 2nd course of Aqua Tilis...any questions? View Thread
Posted by Joey on 5/13/06 at 01:04

so you an underlying conditions that is causing you all this torture. I assume you have gone under every kind of tretment known to man. Have you looked into fibromyalgia? Seeing your photos doesnt make me think of it but deffinetly rsd.

best luck..

Result number: 158

Message Number 198915

Re: fibromyalgia View Thread
Posted by sandy g on 5/11/06 at 10:18

Hi Stephanie...

Thanks for your response. I was diagnosed with fibro in 1987 so i am a very seasoned vet. I followed the conventional antidepressant protocol with some success...i.e i took prozac/elavil for about 10 yrs. I am now off this meds and have switched to oxycodone 15mg. twice daily plus lots of stretching, aerobics, and deep breathing.... and am feeling pretty good.

I always wondered about gaui therapy and for a variety of reasons i am reluctant to try it.

Anyway...i hope it works for you. Best of luck.....sandy

Result number: 159

Message Number 198912

Re: fibromyalgia View Thread
Posted by stephanie a. on 5/11/06 at 09:46

just started i month ago with gaui. i hope it is successful. i see dr. st. armand who wrote the book. i cannot tell yet. i have had it for so many years. try it. you have nothing to loose.

Result number: 160

Message Number 198878

Re: fibromyalgia View Thread
Posted by sandy g on 5/10/06 at 19:15

Hi stephanie...

Do you follow the Guaifenesin Protocol for fibromyalgia? If so, is it successful? Thanks...........sandy

Result number: 161

Message Number 198871

Re: fibromyalgia View Thread
Posted by Shari R on 5/10/06 at 16:23

kconnell, We've been talking alot about that for the last month or so. If you type in Fibromyalgia on the search link, you'll find alot of us have it. I see a Dr. Mark Pallegrino in North Canton Ohio. He also has it & specializes in it. He has many books out there on the subject. If you let us know the area in which you live I'm sure someone out there has a Dr. that can be recommended. I found it to be such a relief to find out that I have it. It explained so much. I know alot of Dr's don't believe in it but thats no big deal, there are plenty that do. Keep in touch, Shari

Result number: 162

Message Number 198825

Re: fibromyalgia View Thread
Posted by stephanie a. on 5/09/06 at 21:39

kconnel- do go to this web site: http://www.fibromyalgiatreatment.com/index.htm and look into the fibro. i cannot help you with the tts. my 22 year old son has tts and we havent gotten a satisfactoroy response from any doctor yet. but the fibro, maybe if you read this. you are not crazy and i think that nerve pain, car accidents and other such things can bring the fibro on.
i have had it for more than 30 years. you are not crazy, the doctors are. you have to get your own care. good luck.

Result number: 163

Message Number 198821

Re: fibromyalgia View Thread
Posted by kconnell on 5/09/06 at 21:16

Yes I have been diagnosed with tts, by both my neurologist and podiatrist. I have pain in my left foot all the time even when I am sleeping or trying to sleep. The off again on again pain is in my arms, wrists, neck, back, shoulder blades and shoulders. Some days it is so bad I can't get relief from pain meds or find a comfortable position. I haven't brought my suspicions up with my GP, because I don't want to go thru the placating attitude I have recieved from other GP's in the past. Nothing is worse than feeling you will never find relief and to recieve that vibe (you know It's all in you head.) You get the feeling they are thinking maybe she should see a psychologist. I know I am not crazy. kconnell

Result number: 164

Message Number 198814

Re: fibromyalgia View Thread
Posted by Kris on 5/09/06 at 18:29

I have tts on one side and bad sciataica & radiculopathy on the other, but I think you can have both. My sister has fibro and she says I have it, lol. Dr. Sister. But seriously, I read about it and it sounds just like me. I SWEAR the tts started it all....

Result number: 165

Message Number 198813

Re: fibromyalgia View Thread
Posted by Kris on 5/09/06 at 18:27

How do you talk to your doctor about the possibility of it?

That's what I want to know. I am almost positive that I have it.

Result number: 166

Message Number 198793

Re: fibromyalgia View Thread
Posted by stephanie a on 5/09/06 at 12:54

please read dr. St. Armand's What you doctor will not tell you about fibromyalgia for help. but what i want to know kconnell is how this correlates to your tarsal tunnel. do yu just have achy feet or specifically in the tarsal region? do you have fair days and then bad days? becasue that can be fibro. my understanding is that tarsal tunnel is all the time. do you have tarsal tunnel?

Result number: 167

Message Number 198787

Re: fibromyalgia View Thread
Posted by sandy g on 5/09/06 at 11:05

Hi there...I was diagnosed with fibromyalgia in 1987. I am now 57yrs.old. My life turned upside down and inside out. Pls. ask me any questions. You can follow my posts for more info...........you state that your symptoms are similiar........similiar to what?............sandy

Result number: 168

Message Number 198762

fibromyalgia View Thread
Posted by kconnell on 5/08/06 at 21:06

Have any of you been diagnosed with fibromialgia? I have read that my sympdtoms are similar, the pain is never totally relieved and my neck gets so stiff I can hardly move it. Kconnell

Result number: 169

Message Number 198001

Re: Fibromyalgia... more info on genetics View Thread
Posted by Grietje B on 4/24/06 at 23:56

Hi everyone,

Kelly asked if there's a genetic link to fibromyalgia.

(I'm in the middle of a fibro flare - it's autumn here in Australia and the change of weather has brought on a terrible flare, so don't take too much notice of spelling errors or wandering thoughts. :)

According to most of the material I've read there is a genetic component to fibromyalgia - though it takes a "trigger" to set it off. Proof of that is in my family, where I and my two younger sisters all have fibro. We developed it at roughly the same age - late forties to mid fifties. I have had it the longest and for quite a few years was the worst, but I have gradually learnt to manage it via medication, nutrients and exercise (gentle), and travel to the tropical north in winter when I can afford it. Cold/wet weather and extreme heat/humidity aggravate the condition. So far, none of my sisters have developed plantar fasciitis, thanks heaven.

Cheers,

Grietje

Result number: 170

Message Number 197676

Re: questions for Sandy and continuing our discussion View Thread
Posted by sandy g on 4/18/06 at 19:26

Hi F.S.

First off, just want to say that i am sorry you are in pain ...and i hope some of my answers may help you.

I would like to start off by stating that the reason i originally needed orthotics was for mild plantar fasciitis...which began about 11 yrs.ago. I did not get orthotics just because because i had fibrmyalgia.....although i have read that PF is very common among fibro people.

I thought my "hard orthotic experience" caused my diagnosis of medical calcaneal nerve entrapment.....but it now turns out i do not have a nerve entrapment nor do i have peripheral neuropathy. I also thought i had tarsal tunnel caused by the hard orthotic but was told by a pod on this board that if that was the case, once you removed the orthotic the TTS pain should vanish.

I am the very first to admit that i certainly overdid it when it come to exercise. My first career was a physical education teacher in the NYC/Buffalo public school systems. Then a PE Director/Fitness person at a few community centers on the East Coast. I was always "running around" you know the type...the energizer bunny...tennis,racquetball, teaching aerobic classes, running, and whatever....yes a classic type "A" always trying to please mom and pop which i think was the real cause of my body breakdown (more on that later).

My fibro pain just did not land in my feet...it landed everywhere. I never think of fibro pain as landing in my feet. In fact my worst pain was in my hamstrings and hips. Generally fibro people have pain all over their bodies . Each year since 1987 i can state that there was a different body part that hurt the most..and it always hurt in a different way. In addition i have lots of myofascial pain and trigger/tender points. A wonderful fibro resource you may be familiar with is Devin Starlanyl/Mary Ellen Copeland's, "Fibromyalgia and Chronic Myofasical Pain Syndrome...a survival manual"

Interesting what you say about your physician not wanting to give a fibro person an EMG. I am scheduled for an EMG tomorrow April 19th at 5:00 p.m. !!!!!!!!! I am having an EMG just to make sure i have been thru all tests necessary to rule out PN/nerve entrapment. I already had a PSSD test at the Dellon institute which was negative.

Fibro cannot cause a positive EMG. 18 yrs. ago a had an EMG that proved negative...the EMG procedure did not increase my fibro symptoms. Where did you get the idea that your tendons are inflamed??. If your tendons are inflamed it is not caused by fibro. Fibro does not cause inflammation.

No i did not have TTS surgery. I switched from Neurontin to Lyrica b/c neurontin stopped working to decrease my burning. Lyrica stopped my burning in about 2 days at 75mg. twice daily. One can have burning in one foot and have TTS and one can have burning in two feet and have TTS.

AS far as treating the burning...when the burning was really intense the only thing that helped me was Lyrica. Some people get relief with infrared heat and (or) ice.

Hope some of this helps...i found burning to be the symptoms i had the most difficulty with. I hope this symptom soon leaves your body...........again lots of soft hugs ((((((((()))))))) sandy

Result number: 171

Message Number 197626

Re: Fibromyalgia... more info View Thread
Posted by D. on 4/17/06 at 19:43

Hi Sandy.

I too, appreciate your comments. I also learned the hard way to listen to my feet rather than the orthotic dispenser, whether it be a pod, pedorthist, orthotist etc. I've been to them all. Despite having worn orthotics for 20 years, my last pod still tried to convince me to wear them a little each day until I got used to them. The orthotics had a huge met pad and I was still recovering from neuroma surgery. They were also very hard and I asked him for a softer covering, but he refused. Even then, I did try for a bit, but quickly discarded them when I realized I was walking differently to avoid the pain of the orthotics. I guess it's easy to follow theory when you can't feel the patient's pain. As an aside, a family member, who is an MD with "normal" feet tried my orthotics on, and found the met pad to be way too high and intolerable. It seems the met pad was stuck in and not made custom for my foot at all. The force was in one small area only. Live and learn.

D.

Result number: 172

Message Number 197608

Re: Fibromyalgia... more info View Thread
Posted by sandy g on 4/17/06 at 11:46

Hi D...

I appreciate your comments. Although i might have come across as a bit "unappreciative" re: Jeremy's comments that was not my intention.

Please understand that i was "burned", very burned by a local podiatrist. I went to her(august 2005) because i was having some resurfacing PF pain and i needed a new pair of orthotics. My 2 pair of Langers were worn out and unfortunately my past podiatrist died. I just purchased a pair from Dr. Kiper and even thought they were a significant help i felt more comfortable dealing with a local face to face physician. This podiatrist knew i had fibromyalgia. Stated that she had patients with this illness and even agreed that fibro people need soft material. Even brought in my broken down orthotics, and told her this is what i would like and please do not make the material any harder. She agreed and molded my feet in a way i think Jeremy would approve. 6 Wks. later i received the orthotics ..they felt harder than my originals..pod stated they would be find for me...needed some break in time. After 5 days of wear (following directions to the T) my feet went into a major major major major major fibro flare. Of course at the time i was not quite sure if it was fibro...the burning was so intense that i needed to take 4 months off of work (no pay) and spend more than $2500 in medical expenses that was not covered by my insurance. Total monies lost in all: $5000.00 all because a podiatrist made a mistake. She (the pod) never apologised but did acknowledge that the initial orthotics she had me wear were in fact to hard for me feet.....however the damage was already done.
Not to be overly dramatic...but i spent 24 hrs. in a psych unit because the pain was so bad that i wanted to put a bullet thru my head....all because a podiatrist said these "harder" orthotics would work for me. Well she made a mistake and i continue to pay dearly for it.

I should not have listened to the pod and should have gone with my own instincts...i should not have worn the orthotic...my mistake. Presently, i was just not in the mood to listen to Jeremy's opinion about orthotics ...especially when i did not request it.

Another note..Unless they are an expert in Fibromyalgia many physicans are clueless about its treatment. Every pod i went too (i have been to see three) gave me a different opinion about what kind of orthotic was best for me. ...then came along Jeremy and although not a pod gave me his ideas. I too value myself as an educated consumer and have invested in 4 pairs of orthotics.

Hope you understand. I do appreciate this board, its members and it physicians. If you look at any of my past posts you will see that..............happy holdays...sandy

Result number: 173

Message Number 197561

Re: Fibromyalgia... more info View Thread
Posted by D. on 4/16/06 at 13:23

Hi Sandy.

It's great to hear that the orthotics are helping you.

I appreciate the professional information Jeremy provides, as it helps me to understand a lot more about orthotics. I've invested enough money in custom orthotics to have an equity position in the labs. It helps to be an educated consumer.

D.

Result number: 174

Message Number 197545

Re: Fibromyalgia... more info View Thread
Posted by Jeremy L on 4/16/06 at 08:32

hello Sandy ...

My comment was not meant to be demeaning to you in any way. In fact, I wrote that I am glad you are finding success with this particular product. My post was intended as a balance of my professional experience with similar items.

You can read about my history and credentials by clicking the "Poster's Profile" link.

Best wishes for your continued good results.

Result number: 175

Message Number 197539

Re: Fibromyalgia...my new diagnosis View Thread
Posted by Shari R on 4/16/06 at 07:25

Kelly, In Dr. Pellegrinos book he lists Genetics in his opinion as a probable cause along with many others. There is no one in my family with any type of Arthritis or FM.
Thanks Mary A., when I go back to see the Dr. in a couple of weeks I'll ask him about the 100 mg. I had a big concern for sleepiness. I already have that issue. I appreciate all the responses on this subject. I know that tons of people don't believe in FM, but after suffering with more symptoms in the last couple of years it makes sense. I only told a couple people & I got the same reaction that I've been getting for the last couple of years with all my other ailments, the look of yeah, sure, just another thing to add to her list. Though I've come to the conclusion that the people that really care about me do feel bad and I can tell they are sincere. But they are few and far between. I swear there are more people on this board that really care than the people that I have contact with in my personal life. Thats life! It's taken alot of years to come to the conclusion that family is what really counts....friends come & go, but my family will always care. Thanks for all the feedback....Shari

Result number: 176

Message Number 197536

Re: Fibromyalgia...my new diagnosis View Thread
Posted by Mary A. on 4/15/06 at 21:22

Shari,

I was reading that you had a script for Ultram 50mg tablets. I was wondering if you knew that Ultram now comes in a time released pill. It is called Ultram ER 100mg pills. I have been using them for a month now, and they sure take the edge off of anytype of nerve pain. And you only have to take 1 a day. Just thought you might like to try it. Gives a more balanced pain relief without the symptoms of sleepiness that accompany so many pain pills.

Mary

Result number: 177

Message Number 197535

Re: Fibromyalgia... more info View Thread
Posted by sandy g on 4/15/06 at 20:50

To Jeremy L...hi again...i just want to say that i responded to a question by another member of this board. I was not "selling" or advertising Dr. Kipers SDO's...i just merely stated that these orthotics have helped me enormously. I was not asking for advice about Dr. Kipers orthotics....Without introducing yourself you gave me negative details about his product. Gee...right now with all the pain i am in, i do not need to hear "trivial" bad things about a product that i find excellent.

Who are you.....????...........sandy

Result number: 178

Message Number 197534

Re: Fibromyalgia... more info View Thread
Posted by sandy g on 4/15/06 at 20:33

Question for Jeremy L....hi

Are you a physician? If so what is your speciality? Thank you........sandy

Result number: 179

Message Number 197523

Re: Fibromyalgia... more info View Thread
Posted by Jeremy L on 4/15/06 at 15:03

Before anyone makes assumptions regarding my philosophies in orthotic care for fybromyalgia, I wanted to make one quick post. With a combination of my patient experiences, dialogues with leading physicians in the field, and searches of current data, orthotics have shown to be an integral part of treatment. With greater stabilization of the foot and ankle, tests show there is less shear to muscular fibers and a decrease in painful symptoms.

Like Shari noted, few if any are tolerable of traditional plastic shell devices. While I see merit in the visco gel types, for this condition I most often make hybrid orthotics of flexible plastic or carbon shells covered with softer, accomidative materials. Those suffering with this condition may certainly invite their physicians to contact me for my results and experiences, should they be open to that. I am always willing to maintain dialogues which help make a greater good in care.

Result number: 180

Message Number 197522

Re: Fibromyalgia... more info View Thread
Posted by Jeremy L on 4/15/06 at 15:03

Before anyone makes assumptions regarding my philosophies in orthotic care for fybromyalgia, I wanted to make one quick post. With a combination of my patient experiences, dialogues with leading physicians in the field, and searches of current data, orthotics have shown to be an integral part of treatment. With greater stabilization of the foot and ankle, tests show there is less shear to muscular fibers and a decrease in painful symptoms.

Like Shari noted, few if any are tolerable of traditional plastic shell devices. While I see merit in the visco gel types, for this condition I most often make hybrid orthotics of flexible plastic or carbon shells covered with softer, accomidative materials. Those suffering with this condition may certainly invite their physicians to contact me for my results and experiences, should they be open to that. I am always willing to maintain dialogues which help make a greater good in care.

Result number: 181

Message Number 197520

Re: Fibromyalgia...my new diagnosis View Thread
Posted by Jeremy L on 4/15/06 at 14:49

Dr. Kiper has some interesting and valid information on his website. He also has some misnomers, but they are a minority among the content given. There are a few aspects with which I give question:

1. Although many of his statements are absolutely true regarding classic Root constructed orthotics, there is nothing to distinguish those from modern functional orthoses which activate the TN joint. There are over 1/2 dozen different facilities currently researching the efficacy of these devices, with papers already hvaing been presented through various channels (including the APMA and PFA). With my experience fabricating and dispensing viscoelastic gel custom inserts there are lots of times where these orthotics will not reach the patient outcome I'm trying to address. But there are times they are irreplacable.

2. Dr. Kiper is not the pioneer of this technology. Reicken's Orthotic Labs has been making and teaching this material technique for ages. Carl Reicken recently was awarded the Lifetime Achievement Award from BCP, as well.

3. I always shudder when I hear of mail-order custom orthotics. More times than not the instructions are for the patient to stand in the box. As soon as that happens the foot is entirely elongated, and along with it every bit of biomechanical deficiency which exists. The resulting orthotic (be it made from gel, foam or plastic) has extremely high tolerance, but rarely does the pain the orthotic was supposed to address diminish. The only time I use this technique is when the patient has a rigid deformity that can only be addressed with the foot in it's elongated state. This is particularly true for those whose knees, hips, and or back are also in a fixed rigid deformity. Any amount of subtalar correction would be extremely painful, from the feet up.

I'm happy to hear that you personally are having good success with his product. I just caution others here reading to explore their options, and uncover professionals who possess both a great deal of experience and a variety of means in addressing orthotic care. One fix is certainly not applicable to every individual.

Result number: 182

Message Number 197512

Re: Fibromyalgia...my new diagnosis View Thread
Posted by sandy g on 4/15/06 at 12:45

Hi Shari..

I applied for disability in 1987. Initially i was rejected and applied a second time. They (the government) requested that i go to their psychiatrist...the guy was really a complete moron. He actually whispered in my ear (i am not making this up) and said the following, "now admit it..you really are not in a lot of pain and if you wanted to you can work a full time job..right?" I completely lost it and went absolutely berserk!!!...screaming, yelling, crying, running around his office just like a 2 yr.old. When i returned home i told my husband (then boyfriend) that this ass-hole shrink will think i am a complete lunatic..i really did not know if i succeeded in proving to them my pain prevented me from supporting myself. Anyway about 2 wks. later i received a check in the amount of $9600.00. There was no letter and i had no idea what this check was. (almost thru it away). Then two days later i received a letter for SSDI stating that i was finally approved..however they approved me secondary to depression...not fibro. I think now there is a line for fibromyalgia SSDI ????.

One can work when receiving SSDI (social security disability income) however you cannot make more than $830.00/month. It increases each january.

I had to quit my job as a PE director/fitness person and look for employment that did not involve too much sitting, standing, walking. Since 1993 i have been working as a dietitian..i am up and down for 4 hrs. 4 days week. I think the key to employment is to try to find a job where you do not have to sit/stand/ walk/ or remain in any one position for more than about 30min. I work anywhere from 15-20 hrs. wk.

I actually hate swimming (not really the act of swimming but i don't like getting chilled). I walk, stair step, elliptical machine and weights 2x wk. Lots and lots and lots and lots of stretching and deep breathing exercises.
My husband is a massage therapist (i know lucky me..however i probably massage him more than he massages me). I find that infra red heat, and shiatsu pressure point therapy along with the above modalities has helped me the most. And of course there is meds...for 10 years i took elavil/prozac and about 3 yrs. ago i switched to oxycodone/neruontin and now have subsituted neurontin with Lyrica.

Currently i am dealing with alot of neuropatic pain which was the result of wearing a "hard orthotic". Now wearing Kipers SDO's which i swear by. Initially i thought i had TTS/PN and was actually diagnosed as having medical calcaneal nerve entrapment. Dr. Hung from the Dellon Institute thinks i am in the early stages of PN. I passed all her tests, she could not find anything wrong with my feet, so her diagnosis is based solely on my oral symptoms...she knows little about fibro..and was unimpressed when i suggested that fibro may be causing my burning, tingling, nervy sensations. In my opinion she is flat out wrong!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
However, only time will tell. I had burning symptoms in 1987 ...19 yrs. ago and if that was PN i those symptoms would be worse and would have progressed to other areas in my bod.

I need to go now. Pls take care of yourself...and pls. ask any more questions. lots of soft hugs ((((((((()))))))).......sandy

Result number: 183

Message Number 197509

Re: Fibromyalgia...my new diagnosis View Thread
Posted by kelly l on 4/15/06 at 09:38

Shari, do you know if fibromyalgia ( did I spell that right?) is hereditary? Thanks

Result number: 184

Message Number 197498

Re: Fibromyalgia...my new diagnosis View Thread
Posted by Shari R on 4/15/06 at 08:10

Sandy, thank you for the info. I'm curious, how are you receiving disability & does working parttime affect that. My big issue right now is what kind of job can I get when my hands, arms, feet & back hurt so badly. My back was actually doing much better when I was swimming, but the pain from my hands and arms from the swimming was just as bad. Thank God the antidepressents are working! I feel like a old woman today because my back hurts so bad. I know I have to get back to the pool but I'm not sure my hands can stand it. I have a script for Ultram 50mg. Ever tried that? Thanks, Shari

Result number: 185

Message Number 197491

Re: Fibromyalgia...my new diagnosis View Thread
Posted by sandy g on 4/14/06 at 20:52

Hi all...O.K. guys listen up....I was diagnosed with fibromyalgia in 1987..at a ripe old age of 38. I see a Dr. Don Goldenberg one of the best and finest fibro physicians on the east coast. There is a definite connection between pain in feet and fibromyalgia....i cannot emphasize that enough!!!!!
Fibro pain can in fact mimic peripheral neuropathy pain...one would actually think one has PN when in fact all your electric symptoms, burning, tingling, numbness are coming from fibro. Fibro pain can be found in ANY and i repeat any area of your body. I actually had muscle spasms in my vagina!! I now take Lyrica and oxycodone. Yes, i have been receiving disability payments since 1987. I am an ex physical education/fitness person and had to change my career. Since 1993 i have been working p/t as a dietitian at a local long term care facility. Fibro has completely turned my life upside down and inside out. It can be a wicked illness but it can be controlled.
Pellegrano is also a great physician...that is probably the best advice i would give a fibro person...make sure you see a physician who devotes a large part of his/her practice to fibromyalgia individuals.....please ask me as many fibro questions as you want............sandy

Result number: 186

Message Number 197464

Re: Fibromyalgia...my new diagnosis View Thread
Posted by Shari R on 4/14/06 at 09:42

I assume thats the branch in Oxford, closer to Cinn.
As I said, I was completely surprised with the diagnosis. I'll just list some of the things that go along with FM that I have. My feet, back & hands-arms are my biggest issue though. I counted about 20 drs I've seen in the last 2 years, all with relationship to most of these symptoms. Everyone I'm sure thinks I'm a hypochondriac. I'm exhausted alot.....doing nothing. Though I'm not sleep deprived like most people. Apparentely pain causes the exhaustion. Fibrofog. I've spent the last 3 months getting memory tests done & seeing 3 different therapist...social worker, psychologist & psychiatrist because of my memory problem. I'm sure I didn't put that on this site as it didn't pertain to feet. Headaches, chest pain....I had a mamogram & 3 months later a ultrasound because of the burning pain above the breast. It was nothing. Morning stiffness & joint pain. Swallowing difficulties, motor tics. Tried contacts last year but couldn't wear them, my eyes were to dry & I could hardly get them in & I had to constantly put drops in. I had leg pains for as many years as I can remember. Restless leg syndrome is one symptom, which I don't have, but motor tics is in the same family of movement disorders.......I see a specialist at Ohio State University for that. I have Irritable Bowel Syndrome, Irritable Bladder. Obviously PF & TTS. I've done everything for that. About 20 Graston Treatments also. I'm done with that now. Weight Gain.......though I do have some thyroid issues & according to the book fibromyalgia has many subsets, and one may cause thyroid problems. I also have alot of foot cramps....like charlie horses. I suffer depression.......but who doesn't with PF. I've had Panic Attacks but only took Paxil for a while. I didn't like it. So thats the deal. In the forms to fill out you circle any symptoms you have. I never related any of them to FM as I knew little about it other that what my friend went through, which was trigger point pain and lack of sleep. Now I'm reading the book & there it all is. At least I'm not as crazy as I though...and maybe not a hyprochondriac.
I'm curious about the nodules. I have many lumpy spots in various places in my body, but to be honest I thought it was like an accumulation of fat? I have one on my upper leg, arm & butt. They don't spasm though. I suppose theres a support group on line for this also. Thanks for your responses guys & gals. Shari

Result number: 187

Message Number 197459

Re: Fibromyalgia...my new diagnosis View Thread
Posted by fellow sufferer on 4/14/06 at 00:28

Shari: It is too late for me to think right now, but I read your past posts and I have alot to say to you. I can really relate to your arm, hand etc. pain. I swim too. I can share with you what helped me these past years since we are so similar.

I really get fibro fog alot. So, ask me questions about exercise. You are so impressive as your own advocate. I admire your tenacity. Way to go girl. Looking forward to communicating with you when time allows.

PS my daughter is goint to college at Miami of Ohio this fall. YEA!!!!

Result number: 188

Message Number 197456

Re: Fibromyalgia...my new diagnosis View Thread
Posted by fellow sufferer on 4/13/06 at 23:51

Hi LADIES!!!! First of all, THANK YOU SOOOO much for your posts. I have had fibro for several years and have read both of your drs. books. I have researched fibro up and down but have not found too much connection between foot pain and fibro. But is does make sense doesn't it?

This is just what I know to be true after all these years. Be careful and gentle with your treatments. For example, I had surgery for TTS and that is what triggered my fibro. Any invasive anything takes longer for us sensitive gals(or in some cases men) to recover from. We are just sensitive to many things and I believe allergies play a role too.

Sleep is a hugs issue for me and I take meds and an antidepressant. If I over-do exercise or anything at all I am super fatigued. Everything in moderation is truly my mantra.

It does make sense our feet take the brunt of everything so I am sure they have trigger points ets. Taping has been the best for me but lately I have been lazy. Wish I had all the money back I spent on orthodics. If only I had known. Right now I just wish I could run out of my house with flip flops on and feel cute!!!

I still have the burning, but only in one foot. Do you think that is fibro. Only problem with this diagnosis, you and all drs. tend to blame every symptom you have on the fibro so who knows if you really have something else that might require a special treatment.

Any other questions, I am happy to help. I am truly interested about what these drs. had to say about foot issues, how to treat etc.

What are your symptoms? Again, thx for the info. BE WELL!!

Result number: 189

Message Number 197453

Re: Fibromyalgia...my new diagnosis View Thread
Posted by Grietje B on 4/13/06 at 23:08


Hi, I've had fibromyalgia (fms) for seven years. I had to stop work because of its severity. About 18 months ago I began to get plantar fasciitis, after redecorating a room and climbing up and down a ladder many times a day in soft slippers (stupid, yes!). I've tried many things - chiropractic, podiatrist, and cortisone injection. The injection stopped the pain for about three months, after which it came back. I had been considering surgery but I'm not at all keen because of the pain amplification that occurs with fms. I have noticed a lot of nobbles on the plantar fascia - nobbles which occur at other sites in my body such as my arms. Dr Devin Starlanyl, who also has fibromyalgia and has written several books on the subject, says that fibromyalgia is often accompanied by Myofascial Pain Syndrome (mps). Mps is a condition where the myofascial tissue thickens and gets stiff. Trigger points occur and one of these (in the heel) can aggravate the pain of plantar fasciitis. People with this condition cannot bear to wear hard orthotics because it presses on the region of referred pain. (I couldn't.) I am thinking of trying the tape method to see if that helps with the pain - also stretching the calf muscles.

Best of luck.

Result number: 190

Message Number 197425

Fibromyalgia...my new diagnosis View Thread
Posted by Shari R on 4/13/06 at 17:54

I went to a new Dr. who I found out about from a store clerk. He's a Physical Medicine & Rehabilitation & Electrodiagnostic Medicine Dr., who also is one of the nations leading experts on fibromyalgia. I believe he's written 10 books or so. He also has fibromyalgia. It was about 80 miles away and thats his secondary office. The other one is about 2 hrs away. I had listed all my symptoms from head to foot. I never for a minute thought I had fibromyalgia because I sleep like a baby. I think he said I had about 18 of the symptoms. I asked if he had one of his books around because I wanted to read it. (he never mentioned that he had written any books or had fibromyalgia}. I knew it because I looked him up on the internet. Even after I left I really wasn't all that sure, but as I tell everyone who is willing to listen I think I have everykind of itis below the neck. I say it half kiddingly, but in my mind I'm not. Anyhow, I was shocked when I started reading this book. There were only a couple symptoms I don't have. PF is one of the symptoms. Anyhow I'll start taking meds as soon as I get the script sent in. By the way I was noticing that one symptom is burning feet. Hummmm. Actually thats not a major problem for me right now, but I've seen it on this board enough. Anyhow, for anyone who is interested, the name of the book is Fibromyalgia..Up Close & Personal, by Dr. Mark Pellegrino.

Result number: 191

Message Number 196988

Re: Question for Tarsal Tunnel sufferers: View Thread
Posted by BRIAN on 4/05/06 at 15:09

have u had every single diagnostic tests for nerves brain, hypothyroid, rhuemetaology, MS, fibromyalgia?

Result number: 192

Message Number 196578

Parke-Davis’ Neurontin(R) (gabapentin capsules) significantly reduced chronic neuropathic pain View Thread
Posted by Bryan W. on 3/30/06 at 18:49

The wonder drug for neuropathic pain...Like the type we with TTS get!!! Here is some info from my cyber search of the pain killer! Enjoy a better life...pain free! My Pod said if my nerve rejuvination does not end all of my pain then this would be the one he would perscribe for me! I have to say from what I read it does seem to work and the side effects for most are nil! Esp. good news that it works well in older patients with DPN..........

One study examined the effects of Neurontin on patients with diabetic peripheral neuropathy (DPN), a chronic, often painful condition that affects approximately half of the estimated 1.5 million diabetes patients in Canada. A companion study examined the use of Neurontin in patients suffering from post-herpetic neuralgia (PHN), the chronic neuropathic pain condition that can follow shingles (herpes zoster).

Results of the national, multi-centre DPN study demonstrated that patients suffering from diabetic peripheral neuropathy experienced a significant reduction in pain after treatment with the drug and that 26 percent of those patients treated with Neurontin were pain-free at the end of the trial compared to 15 percent of patients treated with placebo. This difference was statistically significant.

Findings of the national, multi-centre PHN study showed that patients suffering from the condition experienced a statistically significant reduction in average daily pain after treatment with Neurontin. Importantly, almost twice as many patients treated with Neurontin (16 percent) were pain-free versus those treated with placebo (8.8 percent) at the end of the trial. Both studies also showed that patients receiving Neurontin experienced improvement in sleep and overall quality of life.

The PHN study was a multi-centre, randomised, double-blind study conducted over a treatment period of eight weeks and involved 229 PHN patients.

"The results of this trial are particularly encouraging, given the hundreds of thousands of people suffering from this debilitating and extremely painful condition," said R. Norman Harden, M.D., director of the Centre for Pain Studies, Rehabilitation Institute of Chicago. "Further, the age distribution of patients with PHN includes a disproportionate number of older patients, which is a difficult population to treat."

PHN is a syndrome of often intractable pain following herpes zoster, a condition commonly known as shingles. It is estimated that 10 to 20 percent of Canadians will be affected by herpes zoster in their lifetime. In the majority of patients, the condition is characterised by intense pain that has been described by sufferers as burning, deep aching, tearing and electric shock-like. While the pain tends to fade over a period of time, as many as 15 percent suffer from chronic neuropathic pain that persists beyond the resolution of the herpes zoster rash. Pain that persists for three months after resolution of this rash is commonly defined as PHN. PHN may persist for years in some patients.

The DPN study was a randomised, double-blind, placebo-controlled trial conducted over a treatment period of eight weeks involving a total of 165 patients. The patients enrolled had a one to five-year history of pain associated with diabetic neuropathy.

"DPN is a neuropathic condition that is, historically, extremely difficult to treat," said Keith R. Edwards, M.D., director, Neurological Research Centre, Bennington, VT. "This study is one of the largest of its kind in this condition. In patients with DPN, gabapentin substantially reduced neuropathic pain and was well tolerated.

“Further, more significant pain reduction was observed in some patients after only two weeks of treatment. All of these findings combined are clinically important."

DPN is characterised by nerve fibre loss that can result in symptoms ranging from diminished pain and temperature perception, paresthesia (pins and needles) and neuropathic (sharp or burning) pain, to loss of light touch and muscle weakness. Other symptoms include insomnia, anxiety, depression, weight loss and a general decline in quality of life.

"In this study, Neurontin reduced pain and sleep interference associated with the condition and also exhibited positive effects on mood and quality of life," Dr. Edwards said.

Diabetes is a clinical condition that impairs the ability of the body to produce or properly respond to insulin, a hormone essential for life. Type II diabetes, also known as adult onset or non-insulin-dependent diabetes (despite the fact that many require insulin injections) usually occurs in those over 45 and overweight. Type II diabetes affects the majority of the 1.5 million Canadian diabetics and it is estimated that another 750,000 people are undiagnosed. Type I diabetes, also known as juvenile onset or insulin-dependent diabetes usually starts in children or young adults who are slim and affects about 10 per cent of people with diabetes in Canada.

The pain associated with DPN in diabetic patients is, at times, constant, severe and deep, and is frequently associated with mood and sleep disturbances as well as a decline in function. Pain in diabetic patients with DPN affects the feet and ankles most often and, to a lesser extent, the lower extremities above the knees and upper extremities.

Neurontin is indicated as adjunctive therapy in the treatment of partial seizures with and without secondary generalisation in adults (greater than 12 years old). Neurontin is contraindicated in patients who have demonstrated hypersensitivity to the drug or its ingredients.

The most common adverse events during clinical trials were somnolence (19.3 percent versus 8.7 percent with placebo); dizziness (17.1 percent versus 6.9 percent with placebo); ataxia (12.5 percent versus 5.6 percent with placebo); fatigue (11 percent versus five percent with placebo); nystagmus (8.3 percent versus four percent with placebo); and tremor (6.8 percent versus 3.2 percent with placebo).
http://www.pslgroup.com/dg/D6AC6.htm
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Neurontin has been studied since 1983 and was approved by the FDA for the control of epilepsy in 1994. Parke-Davis has been successfully conducting long-term clinical trials in doses at 2400-3600mg a day.

In 1996, research for other purposes began appearing and there has been a quiet revolution of patients and doctors finding that Neurontin is helpful in illnesses other than epilepsy. Neurontin being prescribed for disorders other than epilepsy is called "off-label" use.

Neurontin has a growing multitude of medical studies showing it effective for off-label illnesses such as:

* Reflex Sympathetic Dystrophy (RSD),
* brain injury,
* essential tremors,
* sleep dysfunction,
* Interstitial Cystitis,
* refractory GU tract pain,
* agitation secondary to dementia,
* muscle cramps,
* inflammatory injuries,
* tinnitus
* phantom limb pain
* cocaine dependence
* TMJ,
* neuropathic pain,
* Shoulder-Hand Syndrome,
* hemifacial spasms,
* peripheral neuropathy,
* the pain, nystagmus, and spasticity of Multiple Sclerosis (MS),
* trigeminal neuralgia,
* prophylaxis and for acute migraines,
* for pain secondary to epidural fibrosis,
* acute and postherpetic neuralgia (Shingles),
* acute pain from Herpes Simplex,
* post-operative pain,
* myofascial pain (MPS),
* radiation myelopathy,
* cancer pain
* Restless Leg Syndrome (RLS),
* Lou Gehrig's Disease (ALS) (but not its progression),
* Periodic Leg Movement (PLM),
* chronic pain not already mentioned here,
* Bipolar Disorder,
* social phobias,
* somatiform pain with depression,
* mood disorders,
* both situational and clinical depression,

and it was concluded in one study that gabapentin (Neurontin) "represents a novel class of antihyperalgesic agents" (pain medications) and millions of us have proven that.

Dr. Seastrunk, a psychiatrist from Texas, was one of the first doctors who found Neurontin helpful in CFS and FMS and he theorized that is because there is a focal brain injury that Neurontin can minimize. Off-label research now points to the probability that Neurontin decreases Substance P activity and its mechanism may involve activation of the neuronal GABAg1,g2 receptors negatively coupled to voltage-dependent calcium channels, thereby lessening pain signals to the brain.
http://web.tampabay.rr.com/lymecfs/nfaq.htm
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NOW WHAT DO THE PATIENTS THINK OF IT??????????????

Off-Label Uses: What isn't Neurontin used for? It's the late-20th century's most successful snake oil! Monotherapy Treatment for Epilepsy (used all by its lonesome). Bipolar Disorder - basically useful only if bad anxiety or substance abuse is also present, or nothing else has worked. And then usually only as an add-on med. Migraines. Neuropathic pain. Depression. PTSD. Alcoholism (one study has it working well on mild-to-moderate alcohol withdrawal, another showed it to be insignificant for acute withdrawal). Anxiety (including panic and social phobia, but Parke-Davis' data are suspect, and public speaking). Sleep Disorders. Restless Leg Syndrome/PLMS, MS, Chronic Fatigue. Menopausal Symptoms. Treating HIV/AIDS-related Neuropathy. Phantom Limb Pain. Cocaine Abuse. And probably a bunch of stuff I don't even know about. Sometimes it's quite useful in these applications, sometimes it's prescribed first just because it's an anticonvulsant with a very low side effect profile and doctors are sick and tired of people whining about how medication sensitive they are.



Neurontin's Pros and Cons:

Pros: It has a very low side effect profile. Given that what you take is what works on your brain there are few drug-drug interactions (but they are wacky). Neurontin (gabapentin) is a proven pain reliever that doesn't mess with you as much as the other anticonvulsants do, and works better for non-migraine pain better than most of the others.



Cons: It doesn't work for a lot of people, mostly because of bioavailabilty issues. Because of Parke-Davis' allegedly sleazy marketing practices you can't get samples from your doctor anymore.

Neurontin's side effects:

Typical Side Effects: The usual for anticonvulsants, albeit to a lesser degree for most people. Although at the higher dosages Mouse and I, especially Mouse, experience memory problems. The main problems with Neurontin are dizziness, cloudy thinking, fatigue and klutziness.



Not So Common Side Effects: Edema. Really goofy thinking - one person taking it calls the med, "Morontin." If being treated for bipolar disorder, don't be surprised if it results in hypomania instead of working as a mood stabilizer - as that has been reported in the clinical trials for epilepsy, in at least one of the studies on Neurontin (gabapentin) as a treatment for bipolar, and several times in the online support groups. I haven't found any studies to back this up, but my doctor tells me that at the higher dosages Neurontin (gabapentin) does start to hit the dopamine receptors. The combination of GABA and dopamine may be just the thing for depression, but can get some people really goofy, and not necessarily in a good way.

These may or may not happen to you don't, so don't be surprised one way or the other.



Freaky Rare Side Effects: Taste perversion, abnormal accommodation, libido increased, baby you are coming over to my house right now! I've got plenty of Neurontin on hand!

You aren't going to get these. I promise.




Interesting Stuff Your Doctor Probably Won't Tell You: Neurontin (gabapentin) is a prime example of the Law of Diminishing Returns in that the more you take the less you get. Seriously. It's right there in the PI sheet. "As dose is increased, bioavailability decreases. Bioavailability of gabapentin is approximately 60%, 47%, 34%, 33%, and 27% following 900, 1200, 2400, 3600, and 4800 mg/day given in 3 divided doses, respectively." You can try to squeeze out a little more absorption by taking it with food, but you buy a whopping 14% increase, on average, in the bioavailability. Sometimes every little bit helps.



Neurontin (gabapentin) is basically a neurotransmitter in a pill. Rather, it's close to the neurotransmitter GABA. GABA can't cross the blood-brain barrier. True synthesized GABA would have to be injected straight into your noggin. Sorry to make you cringe. The point is, unlike most psychiatric drugs, what you take in the capsule (or tablet or oral solution) is what more-or-less what works in your brain. Neurontin (gabapentin) doesn't need your liver to make what really does the job. That means it will play well with practically every other medication there is, right? For us crazies and spazzes, that's right. The only thing we have to be careful with is stuff like Maalox. As a lot of meds cause tummy troubles, a lot of us use OTC remedies like Maalox. Maalox interferes a bit with Neurontin (gabapentin). You just have to wait a couple hours after taking antacids to take Neurontin (gabapentin).

But people who take Neurontin (gabapentin) for pain, and that includes a lot of us crazies, as fibromyalgia is far too common in the bipolar community, Neurontin (gabapentin) has a weird drug-drug interaction with opiates. The opiates make Neurontin (gabapentin) work better, but the Neurontin (gabapentin) makes the opiates less efficient! It's weird, and since Neurontin (gabapentin) isn't really metabolized, who the hell knows what the deal is with that. This is spelled out in the PI sheet, but who reads those, right? When you take Neurontin (gabapentin) along with hydrocodone (a.k.a. Vicodin), it decreases the bioavailability of the hydrocodone by up to 22%! While the bioavailability of Neurontin (gabapentin) is increased by 14%. It's even odder when combined with morphine. As Mouse points out there's an element of timing involved, as the one article on the interaction has morphine administered two hours before the Neurontin (gabapentin). The morphine was unaffected, having pretty much been on its way towards peak plasma, but the Neurontin (gabapentin) bioavailability was increased by a whopping 44%! We have no idea if this effect carries over to the artificial opiods, like Demerol or buprenorphine.

Meanwhile taking naproxen (a.k.a. Aleve) increases Neurontin's bioavailability by 12-15%, while there is no apparent affect on naproxen's bioavailability.






Neurontin's Dosage and How to Take Neurontin: Given all the different things for which Neurontin (gabapentin) is used, I'm not about to cover all the possible dosages. I'm just going to cover the FDA-approved applications in adults and bipolar disorder. For everything else it's between you and your doctor.



For shingles start with 1 300mg dose. On day 2 take your 300mg dose two times a day. On day 3 take it three times a day. Then work your way up as required to a dosage range of 1,800 to 3,600mg a day divided over three to four doses a day.



For epilepsy Parke-Davis recommends you start right out with the therapeutic dosage of 900mg a day, divided over 3 300mg doses. What the hell? This is an add-on medication folks, how about a little titration? My advice is to follow the schedule for shingles. Give your body a chance to get used to this stuff. The effective therapeutic range is 900 to 2,400mg a day, in doses taken three to four times a day. You shouldn't let 12 hours pass between doses.



For bipolar, remember everything is off-label, experimental and, frankly, Neurontin (gabapentin) is not a first-line bipolar medication. Follow the schedule for shingles, although you may allow yourself twice as long to get used to the med - two days at each dosage. Don't expect to feel much until you get to 900mg a day. Like epilepsy, once you get up to 900mg a day, don't let more than 12 hours pass between each dose. If you don't feel anything by the time you get up to 1800mg a day, just give up. If Neurontin (gabapentin) is doing something for you, that's one thing, but if it's not doing anything at all, don't just throw more at it.



Parke-Davis is all about taking it three times a day. My experience, my doctor's and the various studies I've looked at indicate that mileage always varies. There has even been one study on taking Neurontin (gabapentin) three or four times a day. I found that taking it four times a day works better for me than three times a day.



As for how much you can take, the sky is the limit. There is no known lethal dosage for Neurontin (gabapentin). The tablets are more likely to be a choking hazard than the risk of poisoning yourself from several bottles of the stuff. However, between the diminishing returns of bioavailability and the side effects of getting all that stuff in you it's just a pointless exercise to be taking megadosages of Neurontin (gabapentin). The real harm of a lot of Neurontin, from a psychiatric standpoint, is that it gets in the way of taking the right medications. If it works for you, fine. But if Neurontin (gabapentin) isn't doing squat at the normal therapeutic range, just give up and move on.





Days to Reach a Steady State: Two days after you're taking it at least three times a day.

When you're fully saturated with the medication and less prone to peaks and valleys of effects. You still might have peaks of effect after taking many meds, but with a lot of the meds you'll have fewer valleys after this point. In theory anyway.



How Long Neurontin Takes to Work: It should start to do something for you a couple days after you reach 900mg a day. But because of the whole bioavailability issue it may not be until you're somewhere in the range of 900-1800mg a day, presuming it will do anything at all for you.



Neurontin's Half-Life & Average Time to Clear Out of Your System: 5-7 hours. It's out of your system in 2 days.

How to Stop Taking Neurontin: Your doctor should be recommending that you reduce your dosage by 100-300mg a day every two days, 5-7 hour half-life, if not more slowly than that.

Like any anticonvulsant, if you've been taking Neurontin (gabapentin) for more than a couple months and you're up to or above 900mg a day you just can't stop cold turkey if you're not at the therapeutic dosage for another anticonvulsant that you know works for you, otherwise you risk partial-complex, absence seizures or even tonic-clonic grand mals, despite your never having had a seizure disorder before! The risk is worse if you're taking a lithium variant, and/or any antidepressant, especially Wellbutrin (bupropion hydrochloride). Anyone with a history of a seizure disorder who needs to stop taking an anticonvulsant cold turkey needs to be discussing that with two neurologists and not getting your information from some stupid web site. Get off your computer and start making appointments!

If you've worked your way up to a particular dosage, it's usually best to spend this many days at the next lowest dosage before going down the next lowest dosage before that and so forth. This is the least sucky way to avoid problems when stopping any psychiatric medication. Presuming you have the option of slowly tapering off them.




Comments: Be sure to read the section on anticonvulsants if you haven't done so already.

Approved by the FDA to treat epilepsy in December 1993 Neurontin (gabapentin) is the weakest of the semi-official mood stabilizers, but it works for me! Yet I am a known freak. Neurontin's main problem is in the digestive tract, and that is allegedly going to be solved with the new and improved version, pregabalin, which might be on the market by the time you read this. As you can see from the data above, Neurontin's bioavailability tends to be an issue as you take more of it. I've seen other figures indicating even lower bioavailability of Neurontin (gabapentin). Maybe it's because Neurontin (gabapentin) pretty much bypasses your liver and gets to your brain through the L-amino acid pathways. Thus because Mouse and I are total freaks with food allergies and quite sensitive to those sorts of things, we probably get way more Neurontin (gabapentin) absorption than most people. This is just a wild-ass guess on our parts.

Neurontin (gabapentin) has helped Mouse with her restless leg syndrome, and may be providing her with some mood stabilization.

The whole question comes up, is Neurontin (gabapentin) worth a damn as a mood stabilizer? Well it certainly shouldn't be used first without some good reason, such as a comorbid chronic pain ailment or partial onset seizures. Basically the existing data show that Neurontin (gabapentin) isn't that good of a mood stabilizer. At least, not if other stuff seems to work. However, if nothing else is working, adding Neurontin to the mix can sometimes help, although apparently not if rapid cycling is involved. It has helped me. How can I tell? First I tried to see what life would be like without Neurontin (gabapentin). Boy was that a bad time. Since then I switched from 300mg four times a day to 400mg three times a day, and found it to be less effective. If I missed a dose I was more susceptible to breakthrough hypomanias or depressions. At 400mg four times a day my memory is a bit worse, but if I forget a dose (which is now more likely since my memory is worse; like, duh) I don't have a breakthrough event. The reports at Remedy Find and on the bipolar support groups follow the studies - generally useless for most people, but the one missing piece or the one drug that worked when all else failed for a small number of people.
Neurontin (gabapentin) can also be effective in treating panic/anxiety disorders. It's not as good as the benzodiazepines or the antipsychotics in that regard, but if you're not able to tolerate any medication from either of those classes, Neurontin (gabapentin) is certainly better than nothing. I've found it most helpful in dealing with my agoraphobia. It doesn't do squat for Mouse's anxiety. Like people in the one study referenced, Mouse found Neurontin (gabapentin) to aggravate her OCD.

It did start to work on my epilepsy once I got up to the 900mg a day level. Mouse told me the absence seizures were fewer (but they didn't vanish completely until Topamax (topiramate) was added to the cocktail) and the partial-complex events also decreased in frequency and severity. Again it took the addition of Topamax (topiramate) to finally deal with all of my epileptic symptoms. But Neurontin (gabapentin) is quite the helpful medication for me.

As for all the pain stuff, it has helped Mouse with her fibromyalgia, with both the pain and the quality of her sleep, but she hits a wall of side effects. Above 1,200mg a day her memory becomes too bad for her to function. At 1,200mg a day Neurontin (gabapentin) helps a lot, but it could help more were it not for the memory issues. Other people we know taking it for chronic pain have reported a mixed bag of results, some positive some where nothing happened. The people posting at Remedy Find report along similar lines, with a few noting intolerable side effects.

Additionally Neurontin (gabapentin) has been studied and used for things like agitation in dementia patients, cocaine dependency and cravings, and alcohol withdrawal.

It all comes down to being literally able to stomach this stuff. Neurontin (gabapentin) is an effective medication for some people, a worthless sugar pill for others, and an evil source of side effects for a small unfortunate few. The real problem seems to have been Parke-Davis' allegedly sleazy marketing practices, which prevented people from getting the correct medications and has led to an anti-anticonvulsant backlash. They took a good thing and oversold it, screwing it up for everyone else. Expect the backlash to be worse now that Pfizer has settled for over 400 million dollars.

Now the Pfizer has acquired Parke-Davis and Neurontin (gabapentin) is to be superseded by pregablin, who knows what things will be like? Will pregablin be used for as many off-label applications? Will it be more or even less effective in some applications? Neurontin (gabapentin) will still be on the market, but things will be different after 2003.

Like other anticonvulsants, Neurontin (gabapentin) carries the rare but possible risk for aplastic anemia. Mouse had to deal with it when trying Lamictal (lamotrigine), and we know one person who had to stop taking Tegretol (carbamazepine USP) because of it. So if you see lots of weird bruises that you can't explain, see your doctor immediately!



Manufacturers: Parke-Davis, a subsidiary of Pfizer. Also Pharmascience a manufacturer of a Canadian generic.



Sample US Cost: $124 for 100 300mg capsules.

As of 12/0819/2003. Full retail for the uninsured. Go ahead and gloat, citizens of civilized countries and all of you with full medical coverage.



Sample Canadian Cost of Neurontin: $98 for 100 300mg brand-name capsules. $67 for 100 300mg generic capsules.

As of 12/08/2003. In US dollars, for re-importation to the US. Clicking on the link with take you to Canada Pharmacy. Please mention customer # 192929 when you order. It will knock five bucks off of my next order of guess what? Canadian gabapentin!

Result number: 193

Message Number 195117

Re: TTS or PN?? View Thread
Posted by sandy g on 3/08/06 at 10:21

Hi Kelly....have you tried to get your physician to write a letter to your insurance company stating that because of your severe pain related to TTS/PN you desperately need to try Lyrica? .....I know Lyrica does not work for everyone but it does work for me and i was recently dx: with PN although I think much of my nerve pain is fibromyalgia related.....sandy

Result number: 194

Message Number 194794

Re: Connection between bad PF and Hand Tendonitis?? View Thread
Posted by Dr. David S. Wander on 3/04/06 at 12:41

You may want to be evaluated by a rheumatologist to rule out fibromyalgia or other arthritic or collagen disorders.

Result number: 195

Message Number 194191

Re: Fibromyalgia Article View Thread
Posted by Dorothy on 2/25/06 at 19:34

Sandy G -

I'm sorry when people are not helped by anything that reportedly has helped others. My only association with this information is that I read it and thought it might be helpful to someone(s) here. I think that more information, not less, is always better and that people can use information in whatever way they choose. I don't have fibromyalgia and I have never used acupuncture, but on the chance that this information would help someone, I posted what I had come across while reading on other topics. It is always good when people who have firsthand experience or knowledge about something discussed here post their comments here, as you did. I wish that your time and expense with acupuncture had been helpful to you and hope that you find other things that will be. I am sure that other people who have fibromyalgia will appreciate reading about your experience with this treatment. Best wishes -

Result number: 196

Message Number 194170

Re: Fibromyalgia Article View Thread
Posted by sandy g on 2/25/06 at 12:45

Dorothy,

Thank you for the acupuncture/fibro info. I just turned 57yrs. & was diagnosed with fibro in 1987. In October of 2005 i was diagnosed with medical calcaneal nerve entrapment , and on Feb 3, 2006 the Dellon Institute for Peripheral nerve surgery assessed my symptoms to be the early stages of peripheral neurophy. I was a Physical Education Director/teacher and currently work part time as a dietitian at a local hospital.

I consider myself well educated in the fibromyalgia field and someone who will dive into any aliment that affects by bod and will literally try anything to remove pain. That being said i can honestly state i have never met/talked to any fibro person who used acupuncture successfully as a long term treatment for fibro. Personally i tried acupuncture for 3 yrs. with 5 different practitioners. Yes, i had some success...but the pain always returned. It fascinated me how needles placed at different points on your body would immediately stop the pain...especially when the needles were placed on my feet...the pain just disappeared just like a lite switch. However it "held" for a matter of 10 - 30 min. and then the pain returned. After 3 yrs. i was still in pain and about at least $5000.00 poorer if not more.

I have spoken with quite a few fibro people who have tried acupuncture...all with experiences similar to mine.

Even if a fibro person is helped by acupuncture...i do not see this therapy as a practical solution for long term pain control. How can one afford it? unless of course it is covered by insurance or they happen to be wealthy.

I would love to hear from any fibro people who were successfully treated by acupuncture and continue to use this form of therapy as a pain reliever.....sandy

Result number: 197

Message Number 194056

Re: Fibromyalgia Article View Thread
Posted by Dorothy on 2/23/06 at 14:56

fellow sufferer - You're welcome. I want to post the URL for the site this came from because it's a terrific website and I want its creator to have the credit. I don't have it at hand right now but will try to remember to do that. Lots of good information. The credit does not go to me for anything about it - goes to Mayo Clinic for the work on the subject, to the website I mentioned and its creator/owner......I just posted it here for all the "fellow sufferers".....I don't have fibromyalgia but I feel for all of the folks here who have whatever ailments that bring us together here.

Result number: 198

Message Number 194055

Re: Fibromyalgia Article View Thread
Posted by Dorothy on 2/23/06 at 14:52

Kathy G - You have a lot to attend to and keep track of and I appreciate your humor and good nature about it all. I sure do hope you find ways and means to maintain and even improve your various health issues. You're more than welcome for the article - wouldn't it be wonderful if you tried it and it helped!!?? Let's hope for that, or something else that may be out there for you and others who are looking..... I know you might very well find me a pest on these matters - after all, you have plenty of doctors and I'm not one of them (partly because I'm not a doctor!) - BUT - you know when I read your whole cluster of health concerns and I read elsewhere about this or that 'thing' that helps in those areas, I think about the connections. Vitamin D is one of them - 'studies show' - as they always say - that it is really important for asthma, for bone and joints, for so many healh problems...and there is a lot of research going on about Vitamin D now, really pretty exciting stuff. So - as I said not too long ago - I hope you will be sure you are considering this and doing your research. Forever they recommended no more than an RDA of 400 IU. That has been debunked - and was always wrong, based on some bad decisions in the long-ago past - and now the best, most reputable places/doctors are recommending 1,000 IU per day - and IUs higher than that (don't recall the max now) have not been harmful,but it is best to be careful at higher dosages. Asthma, various forms of arthritis, fibromyalgia.....all of these are affected. Now I will butt out of your business!


Best wishes to you always.

Result number: 199

Message Number 194045

Re: Fibromyalgia Article View Thread
Posted by john h on 2/23/06 at 12:11

I had 5-6 treatments (Accupuncture) with a Doctor of Chinese Medicine. No help other than she was a 10. Some of the needles were placed between the toes. You can feel those babies. This is not to say accupuncture might not help some of you it just did not help me. I think that one must have a belief that a procedure like this will help in order for it to help. I am generally a skeptic of non scientific procedures so I was probably a loser going in. I have never believed I could be hypnotized and as a matter of fact no one has ever been able to do it.

Result number: 200

Message Number 194035

Re: Fibromyalgia Article View Thread
Posted by Kathy G on 2/23/06 at 10:35


Dorothy,

More and more, my family is urging me to try acupuncture. Well, my husband wonders if it work because I am such a skeptic? Me - a skeptic? I seem to be perceived as one so probably because I am!

Once they control my newest ailment, nocturnal asthma, and I see the surgeon about having my basal joint replaced on my hand, I may pursue it. I wish I was normal. I guess people get asthma at fifty-six, but it's not common. I think they're on the right track, though. Last night I slept from midnight to eight AM and I didn't wake up coughing once. That's the first time since before Christmas that I've slep all night. I am very tired and brilliantly mentioned that to my husband. He pointed out that maybe the fact that I haven't had a full night's sleep in months might have something to do with it!

I went back for a cortisone shot for my hand and my Rheumatologist was not happy with me. He's been urging me to have this surgery done for three years and I've refused. I even went to two different surgeons but they both agreed I should have it done. So, in a few weeks, I'll see one of them and make arrangements. The Rheumy essentially said he'll give me no more cortisone shots (I've only had five in three years!) and that the deterioration he's seeing in the last three months is very alarming and I had no choice now; I have to have the surgery done.

You know what, once someone told me I had to have the surgery, I began to think that maybe this is the best thing that could have happened. I would have preferred to have it in the middle of October so that I would be going into the winter and not the swimming season, but maybe it won't be so bad and maybe it will work. Maybe I will have one joint in my body that doesn't hurt! And with any luck, I might be able to go back to knitting or crocheting. I'm optimistic. Hope the stupid asthma is under control by the time I have it, although I wouldn't mind just having a nerve block done. Then I could watch and I wouldn't be as sick after the surgery. Anesthesia does a number on me and I usually vomit for at least twelve hours following it, not matter what they give me. Not only that, with a nerve block, I could supervise!

Can't you just hear me? "Hmmmm......Doctor, I think you might have a bleeder there. Why aren't you using the other scalpel? Now what does that little gizmo do?"

The poor guy will probably knock me out with a hammer!

Thanks for the article!

Result number: 201

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