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Pain so bad, I'm in a wheelchair - can you help?

Posted by Karen O. on 3/09/02 at 01:52 (076011)

Hello Doctor(s),

Thank you for reading my e-mail post. I hope that you will have some good advice for me. Today my wheelchair arrived, and as I ponder the events over the year that brought me to this, it just doesn't seem like I should wind up like this. If it's a fate that I have to accept, then I will; however, I absolutely must explore all avenues to try to get relief and/or cure before I can resign myself to this.

I am a 45 year old woman who has had foot trouble most of my life, from early childhood on up. I have flat feet and suffered from arch pain as a young child. However, I had custom arches made for my shoes as I grew up and although I couldn't spend a very long amount of time on my feet without pain, they worked very well for me.

When I was about 17, a friend's foot doctor claimed that he could 'cure' my flat feet and pain. For a period of about 6 months, I would routinely visit his office where he would tape up my feet, each time adding a larger and bulkier arch support. By the time I finished, it was like a baseball. It was excruciating to walk on these 'supports' but I persisted. Eventually I became unable to afford these expensive, ongoing treatments and removed the taped 'supports'. My feet certainly did have the look of having a higher arch, but it quickly fell and I was back to square one.

For many years my feet continued to hurt a great deal if I was on them for any length of time but I always wore OTC arch supports and rested when the pain became too much. I was a professional equestrian and spent an average of 6-8 hours a day on horseback as I was training to join the US Olympic team. I'm sure this placed a lot of stress on my feet and ankles as I continually had to force my feet to remain in an unnatural position during riding. An accident in 1975 with trauma to my knee ended my career and I had to sell all of my horses. I have not ridden since. :-(

For many years I also suffered from severe cramps which occurred several times a day. My toes would curl and cross, and I'd have to vigorously massage my arches and walk for a long time to get it to work itself out. I suppose these would compare to a charley horse in the shins. I still have them occasionally but not as often as I used to.

My foot pain continued throughout the years but didn't seem to get much worse until approximately 4 years ago. My feet started to ache and throb constantly, and no matter what I did it would not go away. I also had pain in my knees and shins but it was not continuous like my feet. The ankle pain was as bad and sometimes worse than the arch area pain. I found that tight compression on my ankles helped, but I'd have to wrap them so tight to get relief that it would often cut off my circulation. There was no relief for the pain in the rest of my feet, though massage would help temporarily.

I have several other medical problems and the doctors I've seen about my feet are quick to point to those other problems as a source of my pain. I cannot help but disagree since my history of foot pain is lifelong. I know that my other problems do aggravate the foot pain, but I don't feel they are the cause. I have endometriosis, fibromyalgia, symptomatic vertebral hemangiomas of the spine (about a dozen), severe abdominal adhesions (from a medical mishap which resulted in peritonitis and near-death). I often have pain in my lower back and hips. My endometriosis causes severe pain for 3-4 days each month, and I have noticed that the week before my period and all through my menses my feet and ankles will throb unmercifully. I wouldn't be surprised to find that there is nerve compression in the abdominal/lower back region which causes this because I will have pain radiating down both legs during those times. Once my menses have passed, the foot pain returns to its normal level, which is unrelenting and extremely difficult to tolerate. Elevating my legs used to help, but it doesn't anymore.

Eventually I wound up seeing a physiatrist and became involved in a pain study and was put on Oxycontin. It has been very helpful for the back pain but it never even touched the foot and ankle pain. I am presently taking 80 mg. of Oxycontin 3x a day (320 mg. total) and am getting no relief at all. I also receive Oxyfast for breakthrough pain during my menses but I still get no relief from this foot pain. I also still have alot of pain above my ankle area, and in the shins up to my knees. I am able to tolerate the shin pain but not the foot/ankle pain.

I recently tried another podiatrist which my physiatrist recommended and he gave me a cortisone injection in my left ankle. It hurt like the devil when he hit the nerve but afterwards my foot became totally numb as expected. However, it did not wear off in 3-4 hours as the doctor suggested; instead, it was 4 days before I was able to have ANY feeling in my foot. I also had numbness up to my knee, but when I told my foot doctor this he scoffed and said that it is impossible. He also said that it is impossible to cause nerve damage with a cortisone injection. Is this true? Since that time, I have had much more pain in my left foot and ankle, with periodic numbness under 3 of my toes and terrible throbbing in the big toe and ankle. I have shooting pains in my feet if I gently tap on the ankle area. It's been nearly 4 weeks since the cortisone injection and the pain has progressed to the point where I can no longer walk. I have a great deal of difficulty trying to work (I am a graphics designer and use the computer for my work so I am not on my feet). I can't concentrate because of this relentless pain. It takes me about 14 hours to do 6 hours worth of work now, and it is not my best work by any means. I have been propping my legs up to try to get some relief from the pain while I work but that doesn't help very much. Now I can't stand to even have my socks touching my feet or it is unbearable. Curiously enough, I still enjoy and benefit from foot massages, even though the benefits are very short-term. The soles of both feet now burn constantly, and I've never had that problem before at all.

The doctor diagnosed my problems as plantar fascitis, metatarsalgia, tarsal tunnel and shin splints. He didn't perform any tests, not even an x-ray. He said that the tests would be inconclusive because my back pain could contribute to the findings. He told me that orthotics were the only thing that he could try, and if that didn't work then there was nothing else that could be done. I was excited about getting the orthotics and felt hopeful that they might be the answer for me. They arrived last week and I immediately put them in my sneakers and went to the store. I wasn't on my feet for half an hour before I was like a cripple. I wore the orthotics for two days but didn't walk much because of the pain. They have increased my pain about 5-fold and I haven't used them since. I don't know if there is a period of 'breaking in'; he didn't give me any instructions except to call him in 2 weeks and let him know if they helped. Since the pain is now so severe, I ordered a wheelchair so I could get around the house and also go to the store. I have elevated foot rests and don't use the foot pad (again, touching my feet causes excruciating pain). I haven't had the wheelchair long enough to be able to tell if total rest will be helpful, but I do know that it is aggravating my back now. I fear that I will soon be confined to the bed and couch. This is no way for a 45 year old woman to live!

I am extremely upset, frustrated and disappointed all at the same time. If dying were an option, I would take it just to get some relief. However, I support both my mother and my son and I would never do such a selfish act and leave them to fend for themselves. There is so much in my life that I still want to do, but how? Tuesday I will see my pain doctor and ask for an increase in my Oxycontin but I doubt that he will give it to me. I don't know how I can cope with this pain, so I have to ask. It seems to me that there should be something else that can be tried but I don't know where to go or whom to turn to. I have seen many doctors over the years but they all point to my fibromyalgia, adhesions or endometriosis and say that that's the problem. No one really wants to treat me. I have been deemed 'inoperable' due to the dense abdominal adhesions, and I don't feel that a hysterectomy would cure my foot problems anyway.

Is there anything - anything at all - that you can suggest that I try? I live in Arizona and have seen many doctors here. Perhaps you can suggest someone else that would be more likely to take an interest in my case? What do you think I should do? I have taped up my feet, used every splint, support, and orthotic known to mankind. I've used ice, heat, massage, soaking, elevation. Nothing gives me relief. Please, PLEASE, if there is anything that you can suggest, I would be forever grateful. I cannot imagine living the rest of my life in this wheelchair, but especially not in this amount of pain.

THANK YOU.......Karen

Re: Pain so bad, I'm in a wheelchair - can you help?

Donna SL on 3/09/02 at 04:09 (076015)

Karen,

I'm very sorry to hear that you have been suffering so much. I'm not a doctor, but just thought I'd offer some input. You mentioned you have a pain doctor. Is he a pain management specialist? Is he a physiatrist at a pain clinic? Has anyone determined if you have chronic regional pain syndrome? The older terminology was RSD. If not, it is critical that this be determined ASAP, or it becomes difficult to treat if not done in early stages. There's a lot of info on the web about this. Either plug in RSD, or chronic regional pain syndrome into any search engine.

Is oxycontin the only medication that has been tried so far? Have you been given any nerve blocks? Have meds like neurontin, tricyclic
antidepressants like elavil, or nortriptyline, etc. been tried? I don't know to much about oxycotin, or if it's similar to methadone, but methadone has helped in severe cases along with nerve meds. There are so many other meds, and combinations that can attempted. You may have tried all these already, so excuse me if you have because I'm guessing. Have nerve conduction studies, bone scans, MRI's, etc. been performed yet, to investigate the foot, and ankle? Have emg/ncv test been done to try to determine if a lower lumbar radiculopathy is the cause of the pain in your lower extremities? Have you seen a neurologist to do check for problems like polyneuropathy, or other neurological problems?

There are ways to stop pain, It's not your time yet. You just need to get to the right doctor to help you. If you are at a pain clinic now, and they are not helping than you need to go somewhere else right away. Your first priority should be to stop the pain, and then try to derterming the cause.

If there was some rare nerve impingement on your spine somewhere, there's a chance an MRI neurography might help identify it, if the above test
don't. These machines are hard to find, but there are several around the country.

Donna

Re: Pain so bad, I'm in a wheelchair - can you help?

Carmen H on 3/09/02 at 09:41 (076025)

I am not a doctor but read the part of your post about Endometriosis. Have you had the surgery? The laproscopic surgery to remove the problem? I did and have not had a problem since. Birth control also controls Endo. have you tried that?
We recently had a discussion on how our periods make our foot pain worse and came down to the conclusion that it may have soemthing to do with the water retention and swelling at that time of the month.
You may try to reduce your salt intake around this time of the month and insure you are getting plenty of water. I know this sounds small...but you have to start somewhere.
About your orthotics...YES they take time to break in. VERY slowly and about ten minutes a day and increase as time goes on.
I wouldn't be too impressed by my doctor either if he didn't give me more than he gave you to work with...no stretching? No excercises to strengthen your back? Who is your primary care giver? Who treats you for your Fibro? You have got to get some serious support and find a doctor that will get you on the right path. BUT this is also your responsiblity. Start keeping a journal of the things you feel each day, what makes the pain worse? Better? Are you on NSAIDS? Do you have a rheumotologist? An orthopedic for your back? Have you been through Physical therapy?
I may be asking questions that are answered in the post somewhere but I am brainstorming and forgive me if I ask a question you have already answered.
Type up your ailments nad conditions and start the search for a doctor. Do you have a pain management doctor?
Get another opinion from ANOTHER Podiatrist immediately find one that will not SCOFF at you (do a search on the find a doctor part of this site).....request an x ray and some nerve tests done to confirm the TTS etc.
I am sure the doctors on this board will try their best to answer your post and we are so sorry for your situation. This board is a great support for many.....stick around. We can at least offer that.
I would be very careful of Oxycontin.....you want to FIX the reason the pain is happening....NOT cover it up with drugs.
There are many things you can try so don't give up!!! Hang in there....there are many people here that can understand your pain.

Re: Karen O

wendyn on 3/09/02 at 11:49 (076031)

Karen, what an awful situation!

I'm not a doctor, but I sympathize with what you're going through.

Orthotics ALWAYS have to be broken in, many doctors will tell you no more than 60 minutes the first day (and that includes sitting time).

Have they checked you for things like rheumatoid arthritis (sorry if I missed it in your post).

Re: Pain so bad, I'm in a wheelchair - can you help?

Karen O. on 3/09/02 at 11:54 (076033)

Thank you for your input, Donna. My history is long and I was trying to shorten it as much as possible so I wound up having to leave out some things. Perhaps this post will help clear up some questions and make it easier for everyone.

I have been told that I am too old to take birth control pills, although they were very beneficial to me during my younger years (I know I'm not over the hill yet, just feel that way!). Another reason for their rejecting my requests is because I smoke - a definite no-no. I have been to see no less than 5 gynecologists and 1 fertility specialist and they all said the same thing: 1) No, they will not prescribe birth control pills; and 2) my adhesions are so dense that it would be dangerous to try to operate so a hysterectomy is out of the question; and 3) I should learn to live with the pain. I have one child and was in labor over 30 hours, had totally natural childbirth with no painkillers or blocks whatsoever *(and didn't take Lamaze classes) and I can tell you that the pain I feel from my endometriosis every month is every bit as bad and many times worse than labor. I've been told that I would most likely have to have a colostomy if they attempted abdominal surgery. My adhesions are so dense that when they did a laparoscopy 4 years ago, they weren't even able to identify any of my organs, except for a small portion of one ovary and that is how they determined I have endometriosis. As if the symptoms weren't enough to warrant this diagnosis...

I have had several nerve blocks in the spine but they all aggravated the pain; none helped. My last shot was the cortisone injection in my ankle, which gave me a lot more problems than what I started with. I can't really put any weight on that ankle due to pain. I'm also experiencing some numbness on the ball of that foot, centering around 3 of my toes.

I've had many MRIs, but none specifically for my feet. They were always concerned with the tumors on my spine. The orthopedic surgeon said that normally they would treat these with radiation and try to shrink them, but they are too afraid to cause more adhesions. I image adhesions on the spinal column could be quite tramatic to the body and cause further problems. I must have a strange tendency to cause adhesions; everyone is so afraid of what I have and don't want to give me more. I know quite a bit about adhesions, as I built the adhesions.org website and was an active member for years. Nowadays I just get too depressed by the postings and rarely go back to visit.

A doctor once prescribed Neurontin for me but didn't schedule any follow-ups, and after reading about the importance of close monitoring on this drug I was afraid to take it. I still have the unopened bottle in my cupboard. I am going to ask my physiatrist about trying it again if he will monitor me properly. I try to be an informed patient (which drives most of my doctors crazy) so I'll go on the net and read everything about a condition or drug before I even take one pill. My doctors hate when I talk about something I read on the internet, as if everything I read on sites like Medscape is a farce. Sometimes I feel like I'm more informed on the latest than my doctor - my gynecologist insists that a hysterectomy 'absolutely cures' endometriosis, and that endometrial implants cannot travel outside of the female organs. Not so! Endometrial implants have been found as far away from the original site as the eyes. I told him that I'd been in contact with the Endometriosis Society and he rolled his eyes and said 'stay away from THOSE people - they're crazy!' He's very old school even though he's a young man. Every informed patient with endo knows that hysterectomy is not a cure-all. All of the endometrial implants have to be removed and no hormones given for about a year after hysterectomy in order to effect a 'complete cure'. All the gyns I've seen insist that if I could have a hysterectomy, I could take hormones immediately after surgery. That only feeds the implants and keeps them alive. Oh, forgive my ranting, that is a totally different discussion that we don't need to get into here...sorry... Anyway, hystectomy isn't an option as there isn't a surgeon around here that will operate on me. And to tell the truth, the operation scares the bejeesus out of me! I don't want to have a colostomy! My feeling is that I shouldn't be worse after treatment - I should be better. And apparently surgery would only cause more problems that I don't want. I'm having such a difficult time dealing with what I have already.

I did try several rounds of anti-depressants, which only made me tired and fatter. They didn't help my pain, but I have heard they have done wonders for others. I'm happy for them and wish it could be me too.

I've read about RSD but there seems to be no definitive way to diagnosis this disease. I've had pain for so many years that I wouldn't be surprised to find that I had it. I have an appointemnt with my pain management doctor on Tuesday and will ask him about it. I feel like I have to walk on eggshells with him - not complain too much or ask for too much pain meds or he will drop me like a hot potato. It's happened too many times in the past. And believe me, when one suddenly has no pain medicine, there is nowhere to turn. Even the ERs in the valley hospitals have refused to give me Oxycontin. They say my dose is 'too high' and they think I am a 'drug seeker' even though I have lots of documentation to back me up. I'm so tired of being treated like a drug addict, and I know that so many people are treated the same way. It's not always the doctor's fault, either; they should be allowed to prescribe what a patient needs without the fear of having the 'drug police' raid their office and take away their license to practice. I think any doctor who prescribes adequate pain medicate is extremely brave and should be supported in every way. They deserve a medal!

I've seen 4 neurologists and all have told me that they believe my 'problems' are related to either the endometriosis, the spinal tumors or the fibromyalgia. They say that I must treat the 'source' of the problem and that they cannot help me. I understand their logic, but I am unable to treat the 'sources', so whom do I turn to for help? Each one I saw felt it was 'unnecessary' to run any tests and sent me on my way. Usually they said I should seek out a pain management specialist or a psychiatrist. Most so-called 'pain management centers' here are anesthesiologists who give spinal nerve blocks - and that's IT. Everyone is afraid to prescribe opoids to manage the pain. The remainder of the 'pain specialists' are holistic doctors. And yes, I've tried that route too, with acupuncture, herbs, meditation, yoga. It was expensive and didn't help. I think it does help some people though.

I've been through physical therapy four times, had three TENS units and also tried chiropractic and massage therapy. All these just seemed to aggravate the problems, but those massages sure felt good! I wouldn't mind doing that every day if I could afford it! :-)

I am scheduled for another MRI soon to ensure that my spinal tumors haven't changed in size. They are non-cancerous and usually asymptomatic for most people. I may have had them for years but they weren't painful until about 5 years ago.

I was hurt in a head-on collision back in 1985, suffering from whiplash and terrible muscle spasms. This really was the beginning of my decline. Ever since it's been one non-curable thing after another. I know that everyone has to deal with some kind of health issue, but this foot pain as really put me over the edge. I don't have any quality of life anymore, and it's imperative that I keep working as so many people depend upon me. I really don't know what to do. If it weren't for them, I swear that Dr. Kervorkian would have visited me long ago. I'm looking forward to dying. I firmly believe in life after death and am not afraid. However, I also know that I don't have the right to end my life prematurely. I have to endure through whatever is thrown my way in this life. Still I can't help but think that there must be something that can be done for me so that I can have some quality of life. This isn't 'living'.

I'm interested in hearing more about an MRI neurography and what it might show. I'll be doing some investigating on the net, for sure! In the meantime, I'm hoping to hear from the doctor(s) - perhaps they will have some good advice for me. I think that I should try another foot doctor, but how does one choose a 'good' one? I was referred to this one by my pain management specialist so I thought he would be good. Since they are probably buddies, I'm afraid to say anything negative about him. I don't want my Oxycontin supply to be suddenly taken away. There are so few doctors that will prescribe this often-abused drug that I treat my doctor like he's God. His prescriptions are the only thing that is keeping me alive at this point. Unfortunately, even those aren't adequate but it's better than nothing! I'm going to ask for an increase this Tuesday - it's a risk to ask but I've been on this same dosage now for nearly 2 years and my body has developed a tolerance so it doesn't work as well for me anymore. This drug is a lifesaver for people like me; as long as the dosage is adequate, life can be pretty good. I want to get back to that level again. Very, very much.....

Thank you all for your replies!!

Karen

Re: Karen O

Karen O. on 3/09/02 at 12:03 (076035)

It's hard to believe that my foot doctor didn't even recommend a break-in period. Plus I'm very discouraged by his comments that this orthotic is the 'only' thing that can be done for me. That doesn't seem right!

And yes, I did have x-rays of my feet a couple years ago and they didn't show any arthritis. My mother, however, has severe rheumatoid arthritis and osteoarthritis too. Her joints are severely deformed and she had a wrist replacement a few years ago. She's now doing well on that latest treatment - can't recall the name of it but she gets it through IV and takes methotrexate with it. I don't seem to have arthritis - yet. Knock on wood!

Karen

Re: Pain so bad, I'm in a wheelchair - can you help?

BrianG on 3/09/02 at 14:36 (076045)

Hi Karen,

Hopefully one of the doctors will be stopping by soon. The weekends can be slow. After two years with no Oxy increase, it sounds like you are due. I have some suggestions for you, please send me an e-mail before you see your doctor this week.

BrianG
(email removed)

Re: Karen O

Ed Davis, DPM on 3/09/02 at 15:53 (076049)

Karen:

Unfortunately, your doctor does not sound like he is very thorough, cautious nor compassionate---all characteristics you must have in a doctor.

You need a very thorough workup by a good clinician--it is a bit tough to tell you where to start online. One of the reasons to have such a doctor is to provide you with a carefully crafted 'gameplan.' You do not want to have to be trying a whole bunch of things or tests without following a logical, well constructed plan of action--one that is thoroughly explained to you.

Where do you live--I will see if i know a good foot doc in your area.
Ed

Re: Pain so bad, I'm in a wheelchair - can you help?

Donna SL on 3/09/02 at 15:56 (076050)

Karen,

I've listed a couple of pain sites below that give some insight to different approaches to pain. The bayareapainmedical site has a lot of animations. Look also under the physicians section, under 'what's hot' where there is a good section on meds, and treatments. My physiatrist gave me this link

http://www.bayareapainmedical.com/

The links below may also provide some insight to different approaches to chronic pain, and the causes

http://www.hosppract.com/issues/2000/07/brook.htm

http://www.helpforpain.com/articles/understand-neuropathic-pain/understanding.htm

http://www.hosppract.com/issues/1998/10/bennett.htm

There is tons of info out there, but the above seem to summarize things nicely.

I found some info on MRI Neurography. A couple on the West coast, and one on the East coast. I'm sure there are more.

http://www.neurography.com/

http://www.nervemed.com/

The next two are from the NJ medical school

http://www.theuniversityhospital.com/peripheral/#hightech

The above link if from the NJ medical school in the peripheral nerve center

http://www.umdnj.edu/nsurgweb/specialtycenter.html

site in seattle

http://www.wrfseattle.org/foundation/1292132.html

I've found these links a while ago, because they helped me with understanding the pain I had been experiencing. I'm sure there is much more info on the web.

Also, I put a lot of info in a post to someone in the TTS section of this board about TTS, and PF pain starting 3-01-02 titled 'nerve conduction studies'. Hopefully the below link will take you to it directly.

bbt.cgi?n=75369

Maybe there is some info in there that may help you.

As far as neurontin it is a safe drug, and doesn't require the monitoring of a similar one called Carbamezepine, which did require close monitoring, and had more complications.

Hopefully these articles will help you understand that pain requires a multi-care approach, and the depression that often accompanies this pain needs to be treated too.

If your pain isn't being understood, and you are feeling the need to hide it, then you need to find another place that understands this. Even if it means travelling out of your area. Also, sometimes when a separate problem occurs some doctors seem to lump the oringinal illness of the cause of everything else that occurs, which may not be the case. I've found at times you need to be demanding to have other problems investigated. You could possibly have TTS, and that needs to be determined by separate test. Have you been to the Mayo clinic?

I know how difficult it is to find doctors that understand this problem, and have seen some neurologist, orthopedic surgeons, podiatrist, etc., that were totally ignorant, and uninterested in this subject. I was fortunate to finally find a compassionate, angelic physiatrist that understood this condition, and directed most of my medical care. He's also a certified pain mgt specialist, and medical acupuncturist. Pain management is such a new field that you may find expertise from doctors trained in various fields from physiatry, psychiatry, and other fields. There are many physiatrist, neurololgist, anesthesiologist etc., that don't have a clue how to treat this, and have been trying their hand at pain mgt, because no specific training really has been established yet. Sometimes it takes a lot of work to find the right doctor, and to get an idea how they approach this problem. I still had to be proactive in my care. Are there any major teaching hospitals near you? If you do a separate post, and just ask if someone knows a pain mgt doctor in your area someone on the HS board may know of someone close by you.

I was successfully treated with TTS, PF, and chronic pain through active release technique (ART), acupuncture, and medication. If massage gives you some relief, the ART may help you tremendously with many of your symptoms. I've done a lot of posting about this on the HS board. Just do a search on my name, Donna SL, or combine it with Active release technique, or therapy, or the initials ART. I know of one person so far that I referred for ART that was comtemplating getting a wheel chair, because her pain was so bad, that is now relieved of many of her symptoms. I'm now following someone else who just started the various treatment I suggested including ART.

As far as endometriosis, I only have limited knowlegde on the subject. My sister had a very severe case in her twenties, and at 30 years old finally resorted to a hysterectomy. Unfortunatley she passed away 10 years later of a totally unrelated rare disease called multiple myeloma, but never had any problems again with endometriosis after the hysterectomy. Again, I don't know much about your situtation.

I don't know too much about RSD, but I think there are specific ways to help determine it now. There should be help for pain. If the above methods where exhausted than there is the possibility that an internal, or external pain pump would help, but hopefully this won't be necessary.

Donna

Re: Pain so bad, I'm in a wheelchair - can you help?

Karen O. on 3/09/02 at 16:22 (076059)

Thank you for all that wonderful information, Donna! I will check it out later today. I'm kind of feeling like just lying around this afernoon, but instead I have to work. :-( Ah well... Which leads me to another question. Has anyone ever received disability while healing from any of these conditions?

Thank you.........

Karen

Re: Karen O

Karen O. on 3/09/02 at 16:25 (076061)

Hello Ed,

I live in the Phoenix, Arizona area. If you know of anyone, please send their name over! :-)

Thanks........

Karen

Re: Karen O

wendyn on 3/09/02 at 19:30 (076075)

KAren - a test for Rhematoid arthritis is a blood test, and I was always asked if there was a family history.....the doctor here is right, you really need to find a compassionate doctor who will investigate what's happening to you.

Re: Pain so bad, I'm in a wheelchair - can you help?

Karen O. on 3/09/02 at 22:12 (076090)

Hi Brian,

I sent you an e-mail - did you get it?

Karen

Re: Pain so bad, I'm in a wheelchair - can you help?

BrianG on 3/10/02 at 08:26 (076104)

Check your mail.....BrianG

Re: Karen O

Karen O. on 3/10/02 at 20:01 (076148)

Have you had any luck finding someone in the Arizona area? Thank you so much for looking!!! :-)

Re: Pain clinics

BrianG on 3/10/02 at 22:36 (076155)

Hi Karen, I sent you some pain clincs from Phoenix. I do realize you are also looking for doctors from that area.

BrianG

Re: Pain so bad, I'm in a wheelchair - can you help?

Donna SL on 3/09/02 at 04:09 (076015)

Karen,

I'm very sorry to hear that you have been suffering so much. I'm not a doctor, but just thought I'd offer some input. You mentioned you have a pain doctor. Is he a pain management specialist? Is he a physiatrist at a pain clinic? Has anyone determined if you have chronic regional pain syndrome? The older terminology was RSD. If not, it is critical that this be determined ASAP, or it becomes difficult to treat if not done in early stages. There's a lot of info on the web about this. Either plug in RSD, or chronic regional pain syndrome into any search engine.

Is oxycontin the only medication that has been tried so far? Have you been given any nerve blocks? Have meds like neurontin, tricyclic
antidepressants like elavil, or nortriptyline, etc. been tried? I don't know to much about oxycotin, or if it's similar to methadone, but methadone has helped in severe cases along with nerve meds. There are so many other meds, and combinations that can attempted. You may have tried all these already, so excuse me if you have because I'm guessing. Have nerve conduction studies, bone scans, MRI's, etc. been performed yet, to investigate the foot, and ankle? Have emg/ncv test been done to try to determine if a lower lumbar radiculopathy is the cause of the pain in your lower extremities? Have you seen a neurologist to do check for problems like polyneuropathy, or other neurological problems?

There are ways to stop pain, It's not your time yet. You just need to get to the right doctor to help you. If you are at a pain clinic now, and they are not helping than you need to go somewhere else right away. Your first priority should be to stop the pain, and then try to derterming the cause.

If there was some rare nerve impingement on your spine somewhere, there's a chance an MRI neurography might help identify it, if the above test
don't. These machines are hard to find, but there are several around the country.

Donna

Re: Pain so bad, I'm in a wheelchair - can you help?

Carmen H on 3/09/02 at 09:41 (076025)

I am not a doctor but read the part of your post about Endometriosis. Have you had the surgery? The laproscopic surgery to remove the problem? I did and have not had a problem since. Birth control also controls Endo. have you tried that?
We recently had a discussion on how our periods make our foot pain worse and came down to the conclusion that it may have soemthing to do with the water retention and swelling at that time of the month.
You may try to reduce your salt intake around this time of the month and insure you are getting plenty of water. I know this sounds small...but you have to start somewhere.
About your orthotics...YES they take time to break in. VERY slowly and about ten minutes a day and increase as time goes on.
I wouldn't be too impressed by my doctor either if he didn't give me more than he gave you to work with...no stretching? No excercises to strengthen your back? Who is your primary care giver? Who treats you for your Fibro? You have got to get some serious support and find a doctor that will get you on the right path. BUT this is also your responsiblity. Start keeping a journal of the things you feel each day, what makes the pain worse? Better? Are you on NSAIDS? Do you have a rheumotologist? An orthopedic for your back? Have you been through Physical therapy?
I may be asking questions that are answered in the post somewhere but I am brainstorming and forgive me if I ask a question you have already answered.
Type up your ailments nad conditions and start the search for a doctor. Do you have a pain management doctor?
Get another opinion from ANOTHER Podiatrist immediately find one that will not SCOFF at you (do a search on the find a doctor part of this site).....request an x ray and some nerve tests done to confirm the TTS etc.
I am sure the doctors on this board will try their best to answer your post and we are so sorry for your situation. This board is a great support for many.....stick around. We can at least offer that.
I would be very careful of Oxycontin.....you want to FIX the reason the pain is happening....NOT cover it up with drugs.
There are many things you can try so don't give up!!! Hang in there....there are many people here that can understand your pain.

Re: Karen O

wendyn on 3/09/02 at 11:49 (076031)

Karen, what an awful situation!

I'm not a doctor, but I sympathize with what you're going through.

Orthotics ALWAYS have to be broken in, many doctors will tell you no more than 60 minutes the first day (and that includes sitting time).

Have they checked you for things like rheumatoid arthritis (sorry if I missed it in your post).

Re: Pain so bad, I'm in a wheelchair - can you help?

Karen O. on 3/09/02 at 11:54 (076033)

Thank you for your input, Donna. My history is long and I was trying to shorten it as much as possible so I wound up having to leave out some things. Perhaps this post will help clear up some questions and make it easier for everyone.

I have been told that I am too old to take birth control pills, although they were very beneficial to me during my younger years (I know I'm not over the hill yet, just feel that way!). Another reason for their rejecting my requests is because I smoke - a definite no-no. I have been to see no less than 5 gynecologists and 1 fertility specialist and they all said the same thing: 1) No, they will not prescribe birth control pills; and 2) my adhesions are so dense that it would be dangerous to try to operate so a hysterectomy is out of the question; and 3) I should learn to live with the pain. I have one child and was in labor over 30 hours, had totally natural childbirth with no painkillers or blocks whatsoever *(and didn't take Lamaze classes) and I can tell you that the pain I feel from my endometriosis every month is every bit as bad and many times worse than labor. I've been told that I would most likely have to have a colostomy if they attempted abdominal surgery. My adhesions are so dense that when they did a laparoscopy 4 years ago, they weren't even able to identify any of my organs, except for a small portion of one ovary and that is how they determined I have endometriosis. As if the symptoms weren't enough to warrant this diagnosis...

I have had several nerve blocks in the spine but they all aggravated the pain; none helped. My last shot was the cortisone injection in my ankle, which gave me a lot more problems than what I started with. I can't really put any weight on that ankle due to pain. I'm also experiencing some numbness on the ball of that foot, centering around 3 of my toes.

I've had many MRIs, but none specifically for my feet. They were always concerned with the tumors on my spine. The orthopedic surgeon said that normally they would treat these with radiation and try to shrink them, but they are too afraid to cause more adhesions. I image adhesions on the spinal column could be quite tramatic to the body and cause further problems. I must have a strange tendency to cause adhesions; everyone is so afraid of what I have and don't want to give me more. I know quite a bit about adhesions, as I built the adhesions.org website and was an active member for years. Nowadays I just get too depressed by the postings and rarely go back to visit.

A doctor once prescribed Neurontin for me but didn't schedule any follow-ups, and after reading about the importance of close monitoring on this drug I was afraid to take it. I still have the unopened bottle in my cupboard. I am going to ask my physiatrist about trying it again if he will monitor me properly. I try to be an informed patient (which drives most of my doctors crazy) so I'll go on the net and read everything about a condition or drug before I even take one pill. My doctors hate when I talk about something I read on the internet, as if everything I read on sites like Medscape is a farce. Sometimes I feel like I'm more informed on the latest than my doctor - my gynecologist insists that a hysterectomy 'absolutely cures' endometriosis, and that endometrial implants cannot travel outside of the female organs. Not so! Endometrial implants have been found as far away from the original site as the eyes. I told him that I'd been in contact with the Endometriosis Society and he rolled his eyes and said 'stay away from THOSE people - they're crazy!' He's very old school even though he's a young man. Every informed patient with endo knows that hysterectomy is not a cure-all. All of the endometrial implants have to be removed and no hormones given for about a year after hysterectomy in order to effect a 'complete cure'. All the gyns I've seen insist that if I could have a hysterectomy, I could take hormones immediately after surgery. That only feeds the implants and keeps them alive. Oh, forgive my ranting, that is a totally different discussion that we don't need to get into here...sorry... Anyway, hystectomy isn't an option as there isn't a surgeon around here that will operate on me. And to tell the truth, the operation scares the bejeesus out of me! I don't want to have a colostomy! My feeling is that I shouldn't be worse after treatment - I should be better. And apparently surgery would only cause more problems that I don't want. I'm having such a difficult time dealing with what I have already.

I did try several rounds of anti-depressants, which only made me tired and fatter. They didn't help my pain, but I have heard they have done wonders for others. I'm happy for them and wish it could be me too.

I've read about RSD but there seems to be no definitive way to diagnosis this disease. I've had pain for so many years that I wouldn't be surprised to find that I had it. I have an appointemnt with my pain management doctor on Tuesday and will ask him about it. I feel like I have to walk on eggshells with him - not complain too much or ask for too much pain meds or he will drop me like a hot potato. It's happened too many times in the past. And believe me, when one suddenly has no pain medicine, there is nowhere to turn. Even the ERs in the valley hospitals have refused to give me Oxycontin. They say my dose is 'too high' and they think I am a 'drug seeker' even though I have lots of documentation to back me up. I'm so tired of being treated like a drug addict, and I know that so many people are treated the same way. It's not always the doctor's fault, either; they should be allowed to prescribe what a patient needs without the fear of having the 'drug police' raid their office and take away their license to practice. I think any doctor who prescribes adequate pain medicate is extremely brave and should be supported in every way. They deserve a medal!

I've seen 4 neurologists and all have told me that they believe my 'problems' are related to either the endometriosis, the spinal tumors or the fibromyalgia. They say that I must treat the 'source' of the problem and that they cannot help me. I understand their logic, but I am unable to treat the 'sources', so whom do I turn to for help? Each one I saw felt it was 'unnecessary' to run any tests and sent me on my way. Usually they said I should seek out a pain management specialist or a psychiatrist. Most so-called 'pain management centers' here are anesthesiologists who give spinal nerve blocks - and that's IT. Everyone is afraid to prescribe opoids to manage the pain. The remainder of the 'pain specialists' are holistic doctors. And yes, I've tried that route too, with acupuncture, herbs, meditation, yoga. It was expensive and didn't help. I think it does help some people though.

I've been through physical therapy four times, had three TENS units and also tried chiropractic and massage therapy. All these just seemed to aggravate the problems, but those massages sure felt good! I wouldn't mind doing that every day if I could afford it! :-)

I am scheduled for another MRI soon to ensure that my spinal tumors haven't changed in size. They are non-cancerous and usually asymptomatic for most people. I may have had them for years but they weren't painful until about 5 years ago.

I was hurt in a head-on collision back in 1985, suffering from whiplash and terrible muscle spasms. This really was the beginning of my decline. Ever since it's been one non-curable thing after another. I know that everyone has to deal with some kind of health issue, but this foot pain as really put me over the edge. I don't have any quality of life anymore, and it's imperative that I keep working as so many people depend upon me. I really don't know what to do. If it weren't for them, I swear that Dr. Kervorkian would have visited me long ago. I'm looking forward to dying. I firmly believe in life after death and am not afraid. However, I also know that I don't have the right to end my life prematurely. I have to endure through whatever is thrown my way in this life. Still I can't help but think that there must be something that can be done for me so that I can have some quality of life. This isn't 'living'.

I'm interested in hearing more about an MRI neurography and what it might show. I'll be doing some investigating on the net, for sure! In the meantime, I'm hoping to hear from the doctor(s) - perhaps they will have some good advice for me. I think that I should try another foot doctor, but how does one choose a 'good' one? I was referred to this one by my pain management specialist so I thought he would be good. Since they are probably buddies, I'm afraid to say anything negative about him. I don't want my Oxycontin supply to be suddenly taken away. There are so few doctors that will prescribe this often-abused drug that I treat my doctor like he's God. His prescriptions are the only thing that is keeping me alive at this point. Unfortunately, even those aren't adequate but it's better than nothing! I'm going to ask for an increase this Tuesday - it's a risk to ask but I've been on this same dosage now for nearly 2 years and my body has developed a tolerance so it doesn't work as well for me anymore. This drug is a lifesaver for people like me; as long as the dosage is adequate, life can be pretty good. I want to get back to that level again. Very, very much.....

Thank you all for your replies!!

Karen

Re: Karen O

Karen O. on 3/09/02 at 12:03 (076035)

It's hard to believe that my foot doctor didn't even recommend a break-in period. Plus I'm very discouraged by his comments that this orthotic is the 'only' thing that can be done for me. That doesn't seem right!

And yes, I did have x-rays of my feet a couple years ago and they didn't show any arthritis. My mother, however, has severe rheumatoid arthritis and osteoarthritis too. Her joints are severely deformed and she had a wrist replacement a few years ago. She's now doing well on that latest treatment - can't recall the name of it but she gets it through IV and takes methotrexate with it. I don't seem to have arthritis - yet. Knock on wood!

Karen

Re: Pain so bad, I'm in a wheelchair - can you help?

BrianG on 3/09/02 at 14:36 (076045)

Hi Karen,

Hopefully one of the doctors will be stopping by soon. The weekends can be slow. After two years with no Oxy increase, it sounds like you are due. I have some suggestions for you, please send me an e-mail before you see your doctor this week.

BrianG
(email removed)

Re: Karen O

Ed Davis, DPM on 3/09/02 at 15:53 (076049)

Karen:

Unfortunately, your doctor does not sound like he is very thorough, cautious nor compassionate---all characteristics you must have in a doctor.

You need a very thorough workup by a good clinician--it is a bit tough to tell you where to start online. One of the reasons to have such a doctor is to provide you with a carefully crafted 'gameplan.' You do not want to have to be trying a whole bunch of things or tests without following a logical, well constructed plan of action--one that is thoroughly explained to you.

Where do you live--I will see if i know a good foot doc in your area.
Ed

Re: Pain so bad, I'm in a wheelchair - can you help?

Donna SL on 3/09/02 at 15:56 (076050)

Karen,

I've listed a couple of pain sites below that give some insight to different approaches to pain. The bayareapainmedical site has a lot of animations. Look also under the physicians section, under 'what's hot' where there is a good section on meds, and treatments. My physiatrist gave me this link

http://www.bayareapainmedical.com/

The links below may also provide some insight to different approaches to chronic pain, and the causes

http://www.hosppract.com/issues/2000/07/brook.htm

http://www.helpforpain.com/articles/understand-neuropathic-pain/understanding.htm

http://www.hosppract.com/issues/1998/10/bennett.htm

There is tons of info out there, but the above seem to summarize things nicely.

I found some info on MRI Neurography. A couple on the West coast, and one on the East coast. I'm sure there are more.

http://www.neurography.com/

http://www.nervemed.com/

The next two are from the NJ medical school

http://www.theuniversityhospital.com/peripheral/#hightech

The above link if from the NJ medical school in the peripheral nerve center

http://www.umdnj.edu/nsurgweb/specialtycenter.html

site in seattle

http://www.wrfseattle.org/foundation/1292132.html

I've found these links a while ago, because they helped me with understanding the pain I had been experiencing. I'm sure there is much more info on the web.

Also, I put a lot of info in a post to someone in the TTS section of this board about TTS, and PF pain starting 3-01-02 titled 'nerve conduction studies'. Hopefully the below link will take you to it directly.

bbt.cgi?n=75369

Maybe there is some info in there that may help you.

As far as neurontin it is a safe drug, and doesn't require the monitoring of a similar one called Carbamezepine, which did require close monitoring, and had more complications.

Hopefully these articles will help you understand that pain requires a multi-care approach, and the depression that often accompanies this pain needs to be treated too.

If your pain isn't being understood, and you are feeling the need to hide it, then you need to find another place that understands this. Even if it means travelling out of your area. Also, sometimes when a separate problem occurs some doctors seem to lump the oringinal illness of the cause of everything else that occurs, which may not be the case. I've found at times you need to be demanding to have other problems investigated. You could possibly have TTS, and that needs to be determined by separate test. Have you been to the Mayo clinic?

I know how difficult it is to find doctors that understand this problem, and have seen some neurologist, orthopedic surgeons, podiatrist, etc., that were totally ignorant, and uninterested in this subject. I was fortunate to finally find a compassionate, angelic physiatrist that understood this condition, and directed most of my medical care. He's also a certified pain mgt specialist, and medical acupuncturist. Pain management is such a new field that you may find expertise from doctors trained in various fields from physiatry, psychiatry, and other fields. There are many physiatrist, neurololgist, anesthesiologist etc., that don't have a clue how to treat this, and have been trying their hand at pain mgt, because no specific training really has been established yet. Sometimes it takes a lot of work to find the right doctor, and to get an idea how they approach this problem. I still had to be proactive in my care. Are there any major teaching hospitals near you? If you do a separate post, and just ask if someone knows a pain mgt doctor in your area someone on the HS board may know of someone close by you.

I was successfully treated with TTS, PF, and chronic pain through active release technique (ART), acupuncture, and medication. If massage gives you some relief, the ART may help you tremendously with many of your symptoms. I've done a lot of posting about this on the HS board. Just do a search on my name, Donna SL, or combine it with Active release technique, or therapy, or the initials ART. I know of one person so far that I referred for ART that was comtemplating getting a wheel chair, because her pain was so bad, that is now relieved of many of her symptoms. I'm now following someone else who just started the various treatment I suggested including ART.

As far as endometriosis, I only have limited knowlegde on the subject. My sister had a very severe case in her twenties, and at 30 years old finally resorted to a hysterectomy. Unfortunatley she passed away 10 years later of a totally unrelated rare disease called multiple myeloma, but never had any problems again with endometriosis after the hysterectomy. Again, I don't know much about your situtation.

I don't know too much about RSD, but I think there are specific ways to help determine it now. There should be help for pain. If the above methods where exhausted than there is the possibility that an internal, or external pain pump would help, but hopefully this won't be necessary.

Donna

Re: Pain so bad, I'm in a wheelchair - can you help?

Karen O. on 3/09/02 at 16:22 (076059)

Thank you for all that wonderful information, Donna! I will check it out later today. I'm kind of feeling like just lying around this afernoon, but instead I have to work. :-( Ah well... Which leads me to another question. Has anyone ever received disability while healing from any of these conditions?

Thank you.........

Karen

Re: Karen O

Karen O. on 3/09/02 at 16:25 (076061)

Hello Ed,

I live in the Phoenix, Arizona area. If you know of anyone, please send their name over! :-)

Thanks........

Karen

Re: Karen O

wendyn on 3/09/02 at 19:30 (076075)

KAren - a test for Rhematoid arthritis is a blood test, and I was always asked if there was a family history.....the doctor here is right, you really need to find a compassionate doctor who will investigate what's happening to you.

Re: Pain so bad, I'm in a wheelchair - can you help?

Karen O. on 3/09/02 at 22:12 (076090)

Hi Brian,

I sent you an e-mail - did you get it?

Karen

Re: Pain so bad, I'm in a wheelchair - can you help?

BrianG on 3/10/02 at 08:26 (076104)

Check your mail.....BrianG

Re: Karen O

Karen O. on 3/10/02 at 20:01 (076148)

Have you had any luck finding someone in the Arizona area? Thank you so much for looking!!! :-)

Re: Pain clinics

BrianG on 3/10/02 at 22:36 (076155)

Hi Karen, I sent you some pain clincs from Phoenix. I do realize you are also looking for doctors from that area.

BrianG