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TTS and Fibromyalgia

Posted by Pat B on 4/17/02 at 19:44 (080045)

I am wondering if there is anyone out there with TTS and Fibromyalgia? I had TTS surgery on my left foot last July and lo and behold, it is more extreme than ever. Worse of all, it is also getting extreme in my right foot. I decided to see a neurologist for another opinion because my podiatrist told me that he has never had an unsuccessful TTS surgery. I don't buy that. I felt it unusual that I started getting pain up in my calves and before I knew it, my whole body is now aching something fierce. I seen my regular doc for the aches and pains and he did tests but they never resulted in anything. He did ask me if I hear voices. That was STUPID!!! I told him I wanted a referral to a neurologist which I got. The neurologist said that he believed I had Fibromyalgia and there was nothing that could be done for my feet because of Fibromyalgia. He felt that because the first surgery wasn't close to being successful that no surgery would be beneficial.

I am told so many things by these doctors that I no longer no what to believe. It seems that when a diagnosis of Fibromyalgia is made, they treat you like you are nuts. I ask why Fibromyalgia happens and they say usually because of stress. In my opinion, stress can be physical because I know I am not crazy. I ask if TTS can be a cause of Fibromyalgia because of all the physical stress that I go through because I am in constant pain and have to continue to work (mostly on my feet) which causes in the long run mental stress from pain and from change in lifestyle from things I once enjoyed. I get, what I believe is crazy, the answer that TTS could not be a cause. I guess I would like others opinions on this or to see if there is anyone else out there who is in my aching shoes with these multiple problems.

I would like to also know how people have so much time off from TTS surgery when I was only off for 2 weeks and sent back to work? I suffer day after day with no hint of going on disability even though my job has disability insurance. I guess the medical field that I go to only believes in pumping thousands of pills into people and collecting on good health insurance. I say this because they always ask me who my insurance company is and throws the works at me. Sorry I am venting here.

So can anyone help me here or is there anyone else like me out there? Maybe I am nuts or wish I soon would be. Maybe then I would not feel the pain. I can't even do a sit down job without my feet burning on the floor or the rest of my body aching. HHEEEEELLLLPPPPP!!!!!!!

Re: TTS and Fibromyalgia

Ed Davis, DPM on 4/17/02 at 20:25 (080052)

I have seen lots of patients with TTS and fibromyalgia. Patients with fibromyalgia seem not to do well with surgery so it is even more crucial in fibromyalgia patients to exhaust ALL reasonable conservative means of treatment first.

First of all make sure that you are seeing a doctor who specializes in fibromyalgia or at least a rheumatologist. Second, consider ESWT if the plantar fasciitis is still bad. Two weeks off is only feasible in a sedentary occupation and then probably not for someone with fibromyalgia.
Ed

Re: TTS and Fibromyalgia

Barbara S. on 4/17/02 at 23:12 (080072)

Hi Pat B I was diagnosed with Fibromyalgia quite a few yrs ago. I had pf surgery in Nov and have been in worse pain since. Pod. Dr. has tried everything then referred me to Neurologist for EMG and tested positive for TTS. My Pod knows I have Fibro., as I told him when I first went to him in April 2000. I was in a car accident March 2001 and was forced to go back to work before my Dr. released me as my disability was denied. I think that this has contribute to my problems in my right foot today as my left side was affected and I think my right was carry the brunt for too long, even though I have a desk job,I have been told by Drs. when you have Fibro. with neck,shoulder and back pain(have two bulging disc in lower back also) that the sitting can be worse than physical work. I just turned 49yrs and I keep on telling my primary care physician I feel like 80. He has but me on Wellbutrin Sr(anti-depressant),but takes up to 4wks to start working.
Pod referred me to Orth Surgeon in March and I will have TTS surgery on April 22nd, which is Monday.
I Pray daily that this is going to work. My Pod. said this ortho is great so I hope it's true.
My Pod has had me off since Nov. 28,2001 as he tried different things,cast,shots,orthotics, anti-inflamatory etc etc. nothing worked.
My disability has been denied again by my work. No pay for 3 months. My Supervisor called me last Tue and told me I had to report to Work Monday April 15, I told her my Dr. had not released me and that I was having Surgery on APril 22nd. Tue recieved a letter from her saying if I didn't return my April 17th it would be considered I abandoned my job and that I resigned. I have 25-1/2 yrs. with SBC Ameritech. I have 4-1/2yrs left for my 30yrs and I need to make it till then as I will need the Health Ins.
So now I will be seeing an Employment Attorney tomorrow,hope she has good news for me.
Well enough of this. The weather is great in Milw WI. Husband and son put up our screen porch so at least I can enjoy the outdoors next week after my surgery. My husband has taken a weeks vacation to take care of me,bless his heart,although it looks like the weather might not be as nice as this week.
This message board is great. Thanks everyone for listening and offering so much I didn't know. Well try to post after my surgery to let everyone know how I am. Thanks again and God Bless

Re: TTS and Fibromyalgia

Laurie R on 4/17/02 at 23:44 (080075)

Dear Barbara, I am so sorry you are in pain and can't work and them giving you such a hard time about it . I don't understand , if your doctor has you off ,why can't you get disability payments through your state?? I mean you have paid into it right ? I live in CA and if you can't work and you have paid into it then you get it with your doctor's note...I think it is great you will see an attorney about this. It just does not sound right .

I wish you all the luck in the world for your surgery ... Please let us know how you are doing after your surgery . I am having foot and ankle surgery done on May 7th , I have been dealing with foot problems now for almost three years... I also got RSD due to all the foot problems...

Take care and I wish you only the best ......Laurie R

Re: TTS and Fibromyalgia

wendyn on 4/17/02 at 23:55 (080077)

Pat - you're not nuts.

I have a lot pain - in all different parts of my body. I live with it most of the time pretty well, but it's always there.

I've had a lot of trouble with something called 'costocondroitis' (sp?) - it's an inflammation of where your ribs attach to your sternum in the front of your breastbone.

I am the only person I know who can literally hurt themselves rolling over in bed at night!!!!!!!

Just wanted you to know that although our situations are exactly the same - I know what it's like to live with lots of pain, and not know why.

Re: TTS and Fibromyalgia

Sharon W on 4/18/02 at 07:36 (080103)

Barbara,

I'm so very sorry to hear what you are going through. I have a friend with fibromyalgia and I see what she puts up with. But you have TTS and PF AS WELL... When was your PF surgery -- was that last year?

It really sounds like the disability insurance where you work has its head up... well, you know. You are absolutely right to get an attorney and fight their rediculous 'rulings'. I can't IMAGINE how you can be scheduled for surgery Apr 22 to correct your condition and you Dr. HASN'T released you to return to work, yet they denied your claim!! That's CRAZY!

-- Sharon

Re: TTS and Fibromyalgia

Barbara S. on 4/18/02 at 07:38 (080105)

Thanks Laurie R. I will sure try and post I soon as I can after my Surgery. Best to all of you on Message Board. Barbara S.

Re: TTS and Fibromyalgia

Barbara S. on 4/18/02 at 07:48 (080109)

Hi Sharon W. Thanks for your support. I had my first surgery Nov 23rd,2001 after almost a yr of conservative methods. This isn't the first time I have had disability denied in the past couple of yrs.,but this has been the longest I have been off.
Because of my other health conditions Fibromyalgia, 2 bulging disc in lower back my Primary Care Physician has tried to get them to let me work 1/2 days In Jan & Feb of last year and it was denied. I think that all this has contribute to my feet trouble now. My TTS is in my right foot which as we all know makes it difficult to drive. Did you know if you get into an accident and they were to find out about this that the insurance company could fight it,as you don't have full strenght in that foot. That was what I was told. So I try not to drive. I have 2 sisters and a couple of friends who I get to take me most places.
Well enough venting again. Everyone Have A Nice Day & God Bless Barbara S.

Re: TTS and Fibromyalgia

Sharon W on 4/18/02 at 10:08 (080121)

Pat,

A friend of mine also has fibromyalgia. She has almost STOPPED going to doctors, because they drive her crazy -- for some of the same reasons you've expressed in your message, above. She is a very intelligent woman and is certainly not 'nuts'. And the same is obviously true for you.

The ONE doctor who has really helped her, is a pain specialist. Her family Dr. had been talking about it for a long time before she finally agreed to see him, but she was really glad she did. She says HE treated her with respect and compassion, and his treatments really helped her.

-- Sharon

Re: TTS and Fibromyalgia

Ed Davis, DPM on 4/18/02 at 11:50 (080140)

It really takes a doctor who subspecializes in fibromyalgia to render effective care. It is a complex disease process which requires an individual who is patient, understands all of the ramifications of this syndrome and is equipped to deal with the 'whole person.'
Ed

Re: TTS and Fibromyalgia IMPORTANT LINK

Ed Davis, DPM on 4/18/02 at 11:55 (080141)

Please take the time to look at this link. Dr. Ken Bakken is an excellent doctor specializing in fibromyalgia. Go to him if you are in the area, otherwise get in touch with him so that he can refer you to other individuals with his treatment philosophy. The link is http://www.nwcim.com/
Ed

Re: TTS and Fibromyalgia IMPORTANT LINK

Sharon W on 4/18/02 at 12:15 (080144)

Dr. Ed,

Thanks. That link looks helpful. I will copy it and send it on to my friend.

I wish she lived in Tacoma and could go see him, but she lives here in central Texas... sometimes it is really frustrating to have to 'make do' with what services are locally available!

-- Sharon

Re: TTS and Fibromyalgia

Pat B. on 4/19/02 at 07:23 (080250)

I too live in Wisconsin. I live in Oconto County north of Green Bay. It scares me to hear the trouble you have with the disability claim. I have never tried to collect it as the doctors must believe that I am not disabled enough. Most people think I look strong and healthy. If they only knew the daily pain such as waking up this morning feeling as though all my ribs are broken on the left side. I actually felt stuck in bed and could not roll over last night. I had to really push myself which hurts the shoulders.

I did not get diagnosed with Fibro until a few months ago. When I first went in for foot pain almost 2 years ago, I went in for may hand hurting at that time as well. My hand and foot were both nerve tested and my foot of course had TTS while my hand had nothing but cramps all the time. My hand of course spread up the arm and about 3 months ago.....BAM...I was sick with pain everywhere. They tested me for everything: lupus, lime disease, rheumatoid arthrits, etc. It all came back negative. The doc just told me that they found nothing. About 2 weeks later, I was in even worse pain and my feet were 'screaming' along with the rest of me. He then told me he thinks I have fibro. He asked me if I heard voices. I wanted to tell him my voices said to hurt him but I didn't. Then I asked for a referral to a neurologist. If anything, I wanted a 2nd opinion to make sure nothing was being overlooked and to have the TTS re-evaluated. He confirmed fibro as my hands tested negative once more. He also did an MRI of the spine. He referred me over to Whole Health which is a Fibromyalgia Clinic in Green Bay. I go there for therapy. It is funny that most therapists have not heard of TTS either. Some have heard of it but never actually seen a patient with it. I do tell them that I will not do any therapy that involves my feet because it produces worse pain. I use my feet enough at work (all 10 hours). They are very good about the Fibro but will learn about TTS.

I really feel sorry for all the people who responded that have both TTS and Fibro. I guess I felt sorry for myself and actually felt alone in this world. It is nice to know that I am not but sorry for those who are like me. In that case, I wish I were alone. The irony of all this is that I work with people with disabilities. I used to joke that someday I would be a client. I never thought this soon. It is good to see that there are people worse off than me and sometimes that helps me with coping.

I will be 40 in July. I thought maybe I could pick a nursing home for my birthday. I feel as though I am 80 at times. I wish for my birthday that I could retire for a year to make my body feel better and to sleep. I get so tired.

I could ramble on about this forever to everyone on this site about the turmoils that pain like this puts us through. I am sure we all know. Thanks for listening and responding. Please keep responding in this case as I need all the support I can get. None of my clients have Fibro or TTS so I like to hear from others who feel the same as I do.

Re: Pat

wendyn on 4/19/02 at 07:42 (080251)

Pat, I have not been diagnosed with fibro - but I've sometimes wondered about it because of how many different places I tend to get pain. (Shoulders, back, knees, wrists, ribs etc).

Is it true that fibro is usually associated with fatigue?

I wonder if they do not suspect it in my case because I don't have fatigue or any other health symptoms.

I thought the 'voices in your head to hurt you doctor' was pretty funny!!!

(Only to those of us here!)

I am 33, and I 'look' completely normal too - it makes it very difficult for people to understand.

Re: TTS and Fibromyalgia

Barbara S. on 4/19/02 at 10:29 (080289)

Hi Pat B. You are the first post I have noticed from Wis. Welcome. It is great to be able to talk with someone going trough the same things. My Fibro.is usually worse in the winter. But I know what you mean about getting up some mornings. Just can't move and now my feet.
I just wanted to ask you if you know about FMLA Law. You should check into this. Stands Family Medical Leave Act. It is for yourself if you are sick or have chronic pain or a family member you may have to take care of. It is 12 wks a yr. Ameritech does let me take them day at a time. I see my Doc every three months and he has to fill out a form. I was told at the end of last yr though that I would not qualify this year as I did not work enough days. I used up my FMLA time,plus I was off for 45day from a car accident.( That disability Ameritech denied too.)
I saw an Employment Law Attorney yesterday she was going to check into that, she said she wasn't aware of that clause. I was a little disappointed when I came out of her office yesterday as she first wants to work on them not firing me. I need to make it another 4-1/2 yrs so I have 30yrs so I can recieve full benefits. She wwants to put my disability aside and take a look at it later as some good faith law. What this means is they tell you have these benefits,but rarely let you collect on them. I had three benefit disabilities denied last yr. My Primary Care Physician
last Jan. wanted me to take a month off denied. Then he asked for 1/2 days denied. I did use some vacation and then just FMLA TIME like 4 days a month. Then I was in car accident in March. A young man ran a red light and hit my car, I was driving, hit the driver side. Went to Chiropractor first took xrays,my spine was shifted. A few days later went to my Primary Doc as my left shoulder was killing me MRI showed no tear in rotator Cuff, but was bruised. Did Physical Therapy at Chiro. office plus was seeing Chiro 2 times a week. He had me off work 9wks, disability denied again. Wanted to me work 1/2 days for a month, denied again. Took some nonpaid time and vacation time. I have still not been released by him for injuries from accident. Was given a verbal warning on my attendance and told I could not be absent again until May 2002.
Feet trouble started up real bad in Aug. Bone Scan showed Facture in ankle and heel. My Pod put me in a cast for 30 days. Amazing disability approved. Took cast off was in extremely worse pain then before. Tried steriod shot no luck. He then suggested PF surgery. Did that Nov 23. and again everything has been worse. Never did get pain relief. Pod ordered MRI said everything healed. Sent to Neurologist for EMG positive for TTS.
Pod tried steriod Injection no relief whatsoever. Referred to Ortho.Surgeon. Now I am having TTS Surgery on April 22nd. After reading your post I am more afraid then ever. MY pod does know I have Fibro. and the ortho surgeon is suppose to be excellent. So I am praying for great things on Mon. I guess I better sign off this is way too long. I thank everyone for listening to me and please pray real hard for me. God Bless take care and will post as soon as I can after surgery. Barbara S

Re: Pat

Pat B on 4/20/02 at 14:41 (080475)

Fatigue is very common because it is difficult to sleep. I feel very tired all the time. I wake up tired and feeling like I haven't slept at all. I feel like my batteries are always drained.

There are so many problems associated with Fibro that I don't know where to begin. I go to therapy and they try different exercises and stretches and almost anything I do creates pain. My shoulder is awful today. I tend to get cramps in arms and legs and tingling which feels like nerve damage. I sometimes wonder if my feet are struggling with TTS or Fibro nowadays. Bowel problems are common, headaches, my ears ring alot, stiffness, aching everywhere!!! You never know when you have done too much for the day until the pain sets in. It seems like it is a delayed reaction just like TTS can be. There are days that my coordination is completely off as well. I say that my brain has disconnected from my spinal cord because there are many things that I cannot do anymore. My typing speed has grossly slowed down because I make mistakes alot and I put in words that are bizarre at times. It feels like some form of retardation. I get very forgetful as well now. I lose things where I was always very very organized. It scares me.

You will also find trigger points scattered throughout your body. My when touched will make me cramp or I feeled very bruised. You will know them when you touch them. There are many weird things with Fibro. The best thing to do is research it. The internet is a great thing for this.

Good luck and I hope you do not have it as it really bites when you start feeling like you are 80 when you are not even 40.

Re: TTS and Fibromyalgia

Pat B on 4/20/02 at 14:57 (080476)

Barbara

You poor girl. It sounds like you have it so rough. I have not yet tried for any disability or never took my Medical leave. The only time off I recieved is 2 weeks after my TTS surgery last July. I always had aches and pains in other places but never thought too much of it except that I was having a bad day. I suffered with my foot then feet for the last 2-3 years now. My hand always cramped up on me as well for about 2-3 years. I have arthritis in areas of my spine so I associated pains with this as well. I have been going to a chiropractor as well for the last few years where it started to do me good because I was stiff like concrete. When my severe pain started about 3 months ago, my neck stiffened up on me extremely. The doctor felt that I would get over it and gave me pain pills. (I like pain pills because it helps me sleep. I do not overdo it and am not an addict.) My neck stayed stiff and then the rest of me went to hell as well. My arms got extremely achy and my ribs felt as though they were broke. I went to the doc in tears because of the pain. I felt as though I got blown off again. My TTS became even more extreme. I missed alot of work as a result. I used up almost all my sick time this year alone because of doc appointments, therapy and just can't get out of bed. I have 2 days left at this point but still have 2 weeks vacation, and 2 weeks comp time accumulated. I signed up for a 30 day disability and my employer also has long term disability. No doc has yet deemed me disabled probably because I look healthy I guess. I figure when it gets bad enough (Fibro and TTS), I will just fall in the doctor's office and they might get a clue then. I keep fighting and I guess everybody needs to do that.

Good luck to you and let me know how you are doing. Feel free to email me direct if you wish at (email removed). Please put TTS and Fibro in the subject. My heart goes out to you.

Pat

Re: Pat

wendyn on 4/20/02 at 18:09 (080495)

Pat - why do people with Fibro have trouble sleeping?

Re: Hi Wendyn

Pat B on 4/24/02 at 19:13 (081005)

Fibro patients usually have trouble sleeping because of pain. I have much trouble staying in one position and I toss and turn all night because I get so sore. Having bad feet does not help either because I get cramps in my feet from TTS when they sit wrong in bed or the blankets touching them. I have many bad feet days, like today, where it is difficult to get comfortable because my feet hurt something terrible (like broken bones). I take 1200mg of Neurontin and 50mg of Amitriptylene which makes me tired but I get lots of nightmares from the Amitriptylene. Pain also causes nightmares for some people like myself. When I was afflicted with TTS only (?), I used to have many dreams of walking forever and ever and being lost and my feet hurting, now I have all sorts of dreams. There are nights that it hurts to breathe because my ribs hurt on my left side. Headaches sometimes can make it difficult to fall asleep or it wakes me. I guess the reasons can be endless. The one thing I do know for sure, it is not fun having TTS and Fibro. It surely is a bad combo. I pity all who are on this page who deal with TTS and Fibro or another disability or several. TTS is no picnic and no other disability is either.

Re: Hi Wendyn

eileenc on 4/27/02 at 14:44 (081351)

Pat: when my foot hurt too much to sleep I would put on socks, then put on one of my husband's athletic socks. Between the two socks I would slip in one of those blue plastic ice packs that you put into your picnic coolers. It helped reduce the pain enough to sleep. Did that for 3 1/2 years.

I started putting my foot in a bath of ice cubes and water every night for 15 - 20 minutes and it reduced the inflammation remarkably well. Add in 2000 mg of Neurontin and a little Vicodin and at least I could go back to work.

I also have sacroiliac problems and have been diagnosed with RSD though I do not agree. I have something neurological going on though.

Good luck.

Re: TTS and Fibromyalgia

Ed Davis, DPM on 4/17/02 at 20:25 (080052)

I have seen lots of patients with TTS and fibromyalgia. Patients with fibromyalgia seem not to do well with surgery so it is even more crucial in fibromyalgia patients to exhaust ALL reasonable conservative means of treatment first.

First of all make sure that you are seeing a doctor who specializes in fibromyalgia or at least a rheumatologist. Second, consider ESWT if the plantar fasciitis is still bad. Two weeks off is only feasible in a sedentary occupation and then probably not for someone with fibromyalgia.
Ed

Re: TTS and Fibromyalgia

Barbara S. on 4/17/02 at 23:12 (080072)

Hi Pat B I was diagnosed with Fibromyalgia quite a few yrs ago. I had pf surgery in Nov and have been in worse pain since. Pod. Dr. has tried everything then referred me to Neurologist for EMG and tested positive for TTS. My Pod knows I have Fibro., as I told him when I first went to him in April 2000. I was in a car accident March 2001 and was forced to go back to work before my Dr. released me as my disability was denied. I think that this has contribute to my problems in my right foot today as my left side was affected and I think my right was carry the brunt for too long, even though I have a desk job,I have been told by Drs. when you have Fibro. with neck,shoulder and back pain(have two bulging disc in lower back also) that the sitting can be worse than physical work. I just turned 49yrs and I keep on telling my primary care physician I feel like 80. He has but me on Wellbutrin Sr(anti-depressant),but takes up to 4wks to start working.
Pod referred me to Orth Surgeon in March and I will have TTS surgery on April 22nd, which is Monday.
I Pray daily that this is going to work. My Pod. said this ortho is great so I hope it's true.
My Pod has had me off since Nov. 28,2001 as he tried different things,cast,shots,orthotics, anti-inflamatory etc etc. nothing worked.
My disability has been denied again by my work. No pay for 3 months. My Supervisor called me last Tue and told me I had to report to Work Monday April 15, I told her my Dr. had not released me and that I was having Surgery on APril 22nd. Tue recieved a letter from her saying if I didn't return my April 17th it would be considered I abandoned my job and that I resigned. I have 25-1/2 yrs. with SBC Ameritech. I have 4-1/2yrs left for my 30yrs and I need to make it till then as I will need the Health Ins.
So now I will be seeing an Employment Attorney tomorrow,hope she has good news for me.
Well enough of this. The weather is great in Milw WI. Husband and son put up our screen porch so at least I can enjoy the outdoors next week after my surgery. My husband has taken a weeks vacation to take care of me,bless his heart,although it looks like the weather might not be as nice as this week.
This message board is great. Thanks everyone for listening and offering so much I didn't know. Well try to post after my surgery to let everyone know how I am. Thanks again and God Bless

Re: TTS and Fibromyalgia

Laurie R on 4/17/02 at 23:44 (080075)

Dear Barbara, I am so sorry you are in pain and can't work and them giving you such a hard time about it . I don't understand , if your doctor has you off ,why can't you get disability payments through your state?? I mean you have paid into it right ? I live in CA and if you can't work and you have paid into it then you get it with your doctor's note...I think it is great you will see an attorney about this. It just does not sound right .

I wish you all the luck in the world for your surgery ... Please let us know how you are doing after your surgery . I am having foot and ankle surgery done on May 7th , I have been dealing with foot problems now for almost three years... I also got RSD due to all the foot problems...

Take care and I wish you only the best ......Laurie R

Re: TTS and Fibromyalgia

wendyn on 4/17/02 at 23:55 (080077)

Pat - you're not nuts.

I have a lot pain - in all different parts of my body. I live with it most of the time pretty well, but it's always there.

I've had a lot of trouble with something called 'costocondroitis' (sp?) - it's an inflammation of where your ribs attach to your sternum in the front of your breastbone.

I am the only person I know who can literally hurt themselves rolling over in bed at night!!!!!!!

Just wanted you to know that although our situations are exactly the same - I know what it's like to live with lots of pain, and not know why.

Re: TTS and Fibromyalgia

Sharon W on 4/18/02 at 07:36 (080103)

Barbara,

I'm so very sorry to hear what you are going through. I have a friend with fibromyalgia and I see what she puts up with. But you have TTS and PF AS WELL... When was your PF surgery -- was that last year?

It really sounds like the disability insurance where you work has its head up... well, you know. You are absolutely right to get an attorney and fight their rediculous 'rulings'. I can't IMAGINE how you can be scheduled for surgery Apr 22 to correct your condition and you Dr. HASN'T released you to return to work, yet they denied your claim!! That's CRAZY!

-- Sharon

Re: TTS and Fibromyalgia

Barbara S. on 4/18/02 at 07:38 (080105)

Thanks Laurie R. I will sure try and post I soon as I can after my Surgery. Best to all of you on Message Board. Barbara S.

Re: TTS and Fibromyalgia

Barbara S. on 4/18/02 at 07:48 (080109)

Hi Sharon W. Thanks for your support. I had my first surgery Nov 23rd,2001 after almost a yr of conservative methods. This isn't the first time I have had disability denied in the past couple of yrs.,but this has been the longest I have been off.
Because of my other health conditions Fibromyalgia, 2 bulging disc in lower back my Primary Care Physician has tried to get them to let me work 1/2 days In Jan & Feb of last year and it was denied. I think that all this has contribute to my feet trouble now. My TTS is in my right foot which as we all know makes it difficult to drive. Did you know if you get into an accident and they were to find out about this that the insurance company could fight it,as you don't have full strenght in that foot. That was what I was told. So I try not to drive. I have 2 sisters and a couple of friends who I get to take me most places.
Well enough venting again. Everyone Have A Nice Day & God Bless Barbara S.

Re: TTS and Fibromyalgia

Sharon W on 4/18/02 at 10:08 (080121)

Pat,

A friend of mine also has fibromyalgia. She has almost STOPPED going to doctors, because they drive her crazy -- for some of the same reasons you've expressed in your message, above. She is a very intelligent woman and is certainly not 'nuts'. And the same is obviously true for you.

The ONE doctor who has really helped her, is a pain specialist. Her family Dr. had been talking about it for a long time before she finally agreed to see him, but she was really glad she did. She says HE treated her with respect and compassion, and his treatments really helped her.

-- Sharon

Re: TTS and Fibromyalgia

Ed Davis, DPM on 4/18/02 at 11:50 (080140)

It really takes a doctor who subspecializes in fibromyalgia to render effective care. It is a complex disease process which requires an individual who is patient, understands all of the ramifications of this syndrome and is equipped to deal with the 'whole person.'
Ed

Re: TTS and Fibromyalgia IMPORTANT LINK

Ed Davis, DPM on 4/18/02 at 11:55 (080141)

Please take the time to look at this link. Dr. Ken Bakken is an excellent doctor specializing in fibromyalgia. Go to him if you are in the area, otherwise get in touch with him so that he can refer you to other individuals with his treatment philosophy. The link is http://www.nwcim.com/
Ed

Re: TTS and Fibromyalgia IMPORTANT LINK

Sharon W on 4/18/02 at 12:15 (080144)

Dr. Ed,

Thanks. That link looks helpful. I will copy it and send it on to my friend.

I wish she lived in Tacoma and could go see him, but she lives here in central Texas... sometimes it is really frustrating to have to 'make do' with what services are locally available!

-- Sharon

Re: TTS and Fibromyalgia

Pat B. on 4/19/02 at 07:23 (080250)

I too live in Wisconsin. I live in Oconto County north of Green Bay. It scares me to hear the trouble you have with the disability claim. I have never tried to collect it as the doctors must believe that I am not disabled enough. Most people think I look strong and healthy. If they only knew the daily pain such as waking up this morning feeling as though all my ribs are broken on the left side. I actually felt stuck in bed and could not roll over last night. I had to really push myself which hurts the shoulders.

I did not get diagnosed with Fibro until a few months ago. When I first went in for foot pain almost 2 years ago, I went in for may hand hurting at that time as well. My hand and foot were both nerve tested and my foot of course had TTS while my hand had nothing but cramps all the time. My hand of course spread up the arm and about 3 months ago.....BAM...I was sick with pain everywhere. They tested me for everything: lupus, lime disease, rheumatoid arthrits, etc. It all came back negative. The doc just told me that they found nothing. About 2 weeks later, I was in even worse pain and my feet were 'screaming' along with the rest of me. He then told me he thinks I have fibro. He asked me if I heard voices. I wanted to tell him my voices said to hurt him but I didn't. Then I asked for a referral to a neurologist. If anything, I wanted a 2nd opinion to make sure nothing was being overlooked and to have the TTS re-evaluated. He confirmed fibro as my hands tested negative once more. He also did an MRI of the spine. He referred me over to Whole Health which is a Fibromyalgia Clinic in Green Bay. I go there for therapy. It is funny that most therapists have not heard of TTS either. Some have heard of it but never actually seen a patient with it. I do tell them that I will not do any therapy that involves my feet because it produces worse pain. I use my feet enough at work (all 10 hours). They are very good about the Fibro but will learn about TTS.

I really feel sorry for all the people who responded that have both TTS and Fibro. I guess I felt sorry for myself and actually felt alone in this world. It is nice to know that I am not but sorry for those who are like me. In that case, I wish I were alone. The irony of all this is that I work with people with disabilities. I used to joke that someday I would be a client. I never thought this soon. It is good to see that there are people worse off than me and sometimes that helps me with coping.

I will be 40 in July. I thought maybe I could pick a nursing home for my birthday. I feel as though I am 80 at times. I wish for my birthday that I could retire for a year to make my body feel better and to sleep. I get so tired.

I could ramble on about this forever to everyone on this site about the turmoils that pain like this puts us through. I am sure we all know. Thanks for listening and responding. Please keep responding in this case as I need all the support I can get. None of my clients have Fibro or TTS so I like to hear from others who feel the same as I do.

Re: Pat

wendyn on 4/19/02 at 07:42 (080251)

Pat, I have not been diagnosed with fibro - but I've sometimes wondered about it because of how many different places I tend to get pain. (Shoulders, back, knees, wrists, ribs etc).

Is it true that fibro is usually associated with fatigue?

I wonder if they do not suspect it in my case because I don't have fatigue or any other health symptoms.

I thought the 'voices in your head to hurt you doctor' was pretty funny!!!

(Only to those of us here!)

I am 33, and I 'look' completely normal too - it makes it very difficult for people to understand.

Re: TTS and Fibromyalgia

Barbara S. on 4/19/02 at 10:29 (080289)

Hi Pat B. You are the first post I have noticed from Wis. Welcome. It is great to be able to talk with someone going trough the same things. My Fibro.is usually worse in the winter. But I know what you mean about getting up some mornings. Just can't move and now my feet.
I just wanted to ask you if you know about FMLA Law. You should check into this. Stands Family Medical Leave Act. It is for yourself if you are sick or have chronic pain or a family member you may have to take care of. It is 12 wks a yr. Ameritech does let me take them day at a time. I see my Doc every three months and he has to fill out a form. I was told at the end of last yr though that I would not qualify this year as I did not work enough days. I used up my FMLA time,plus I was off for 45day from a car accident.( That disability Ameritech denied too.)
I saw an Employment Law Attorney yesterday she was going to check into that, she said she wasn't aware of that clause. I was a little disappointed when I came out of her office yesterday as she first wants to work on them not firing me. I need to make it another 4-1/2 yrs so I have 30yrs so I can recieve full benefits. She wwants to put my disability aside and take a look at it later as some good faith law. What this means is they tell you have these benefits,but rarely let you collect on them. I had three benefit disabilities denied last yr. My Primary Care Physician
last Jan. wanted me to take a month off denied. Then he asked for 1/2 days denied. I did use some vacation and then just FMLA TIME like 4 days a month. Then I was in car accident in March. A young man ran a red light and hit my car, I was driving, hit the driver side. Went to Chiropractor first took xrays,my spine was shifted. A few days later went to my Primary Doc as my left shoulder was killing me MRI showed no tear in rotator Cuff, but was bruised. Did Physical Therapy at Chiro. office plus was seeing Chiro 2 times a week. He had me off work 9wks, disability denied again. Wanted to me work 1/2 days for a month, denied again. Took some nonpaid time and vacation time. I have still not been released by him for injuries from accident. Was given a verbal warning on my attendance and told I could not be absent again until May 2002.
Feet trouble started up real bad in Aug. Bone Scan showed Facture in ankle and heel. My Pod put me in a cast for 30 days. Amazing disability approved. Took cast off was in extremely worse pain then before. Tried steriod shot no luck. He then suggested PF surgery. Did that Nov 23. and again everything has been worse. Never did get pain relief. Pod ordered MRI said everything healed. Sent to Neurologist for EMG positive for TTS.
Pod tried steriod Injection no relief whatsoever. Referred to Ortho.Surgeon. Now I am having TTS Surgery on April 22nd. After reading your post I am more afraid then ever. MY pod does know I have Fibro. and the ortho surgeon is suppose to be excellent. So I am praying for great things on Mon. I guess I better sign off this is way too long. I thank everyone for listening to me and please pray real hard for me. God Bless take care and will post as soon as I can after surgery. Barbara S

Re: Pat

Pat B on 4/20/02 at 14:41 (080475)

Fatigue is very common because it is difficult to sleep. I feel very tired all the time. I wake up tired and feeling like I haven't slept at all. I feel like my batteries are always drained.

There are so many problems associated with Fibro that I don't know where to begin. I go to therapy and they try different exercises and stretches and almost anything I do creates pain. My shoulder is awful today. I tend to get cramps in arms and legs and tingling which feels like nerve damage. I sometimes wonder if my feet are struggling with TTS or Fibro nowadays. Bowel problems are common, headaches, my ears ring alot, stiffness, aching everywhere!!! You never know when you have done too much for the day until the pain sets in. It seems like it is a delayed reaction just like TTS can be. There are days that my coordination is completely off as well. I say that my brain has disconnected from my spinal cord because there are many things that I cannot do anymore. My typing speed has grossly slowed down because I make mistakes alot and I put in words that are bizarre at times. It feels like some form of retardation. I get very forgetful as well now. I lose things where I was always very very organized. It scares me.

You will also find trigger points scattered throughout your body. My when touched will make me cramp or I feeled very bruised. You will know them when you touch them. There are many weird things with Fibro. The best thing to do is research it. The internet is a great thing for this.

Good luck and I hope you do not have it as it really bites when you start feeling like you are 80 when you are not even 40.

Re: TTS and Fibromyalgia

Pat B on 4/20/02 at 14:57 (080476)

Barbara

You poor girl. It sounds like you have it so rough. I have not yet tried for any disability or never took my Medical leave. The only time off I recieved is 2 weeks after my TTS surgery last July. I always had aches and pains in other places but never thought too much of it except that I was having a bad day. I suffered with my foot then feet for the last 2-3 years now. My hand always cramped up on me as well for about 2-3 years. I have arthritis in areas of my spine so I associated pains with this as well. I have been going to a chiropractor as well for the last few years where it started to do me good because I was stiff like concrete. When my severe pain started about 3 months ago, my neck stiffened up on me extremely. The doctor felt that I would get over it and gave me pain pills. (I like pain pills because it helps me sleep. I do not overdo it and am not an addict.) My neck stayed stiff and then the rest of me went to hell as well. My arms got extremely achy and my ribs felt as though they were broke. I went to the doc in tears because of the pain. I felt as though I got blown off again. My TTS became even more extreme. I missed alot of work as a result. I used up almost all my sick time this year alone because of doc appointments, therapy and just can't get out of bed. I have 2 days left at this point but still have 2 weeks vacation, and 2 weeks comp time accumulated. I signed up for a 30 day disability and my employer also has long term disability. No doc has yet deemed me disabled probably because I look healthy I guess. I figure when it gets bad enough (Fibro and TTS), I will just fall in the doctor's office and they might get a clue then. I keep fighting and I guess everybody needs to do that.

Good luck to you and let me know how you are doing. Feel free to email me direct if you wish at (email removed). Please put TTS and Fibro in the subject. My heart goes out to you.

Pat

Re: Pat

wendyn on 4/20/02 at 18:09 (080495)

Pat - why do people with Fibro have trouble sleeping?

Re: Hi Wendyn

Pat B on 4/24/02 at 19:13 (081005)

Fibro patients usually have trouble sleeping because of pain. I have much trouble staying in one position and I toss and turn all night because I get so sore. Having bad feet does not help either because I get cramps in my feet from TTS when they sit wrong in bed or the blankets touching them. I have many bad feet days, like today, where it is difficult to get comfortable because my feet hurt something terrible (like broken bones). I take 1200mg of Neurontin and 50mg of Amitriptylene which makes me tired but I get lots of nightmares from the Amitriptylene. Pain also causes nightmares for some people like myself. When I was afflicted with TTS only (?), I used to have many dreams of walking forever and ever and being lost and my feet hurting, now I have all sorts of dreams. There are nights that it hurts to breathe because my ribs hurt on my left side. Headaches sometimes can make it difficult to fall asleep or it wakes me. I guess the reasons can be endless. The one thing I do know for sure, it is not fun having TTS and Fibro. It surely is a bad combo. I pity all who are on this page who deal with TTS and Fibro or another disability or several. TTS is no picnic and no other disability is either.

Re: Hi Wendyn

eileenc on 4/27/02 at 14:44 (081351)

Pat: when my foot hurt too much to sleep I would put on socks, then put on one of my husband's athletic socks. Between the two socks I would slip in one of those blue plastic ice packs that you put into your picnic coolers. It helped reduce the pain enough to sleep. Did that for 3 1/2 years.

I started putting my foot in a bath of ice cubes and water every night for 15 - 20 minutes and it reduced the inflammation remarkably well. Add in 2000 mg of Neurontin and a little Vicodin and at least I could go back to work.

I also have sacroiliac problems and have been diagnosed with RSD though I do not agree. I have something neurological going on though.

Good luck.