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Fibromyalgia and PF

Posted by Shell D. on 10/01/03 at 15:06 (131850)

I've suffered with PF for 5 years now. I've had surgery, physical therapy, shoe inserts, etc etc etc. Last December I had ESWT and it was successful for about 4 months. Now, my feet are worse than ever. The PF is absolutely terrible. I was diagnosed with fibromyalgia 2 weeks ago. Could this have anything to do with the success rate of the ESWT? I'm scheduled to have it repeated (OssaTron) next week. Hopefully it will last longer than it did the first time.
Does anyone have any experience with fibromyalgia and PF? Could this be making my healing less successful?

Re: Fibromyalgia and PF

marie on 10/01/03 at 15:18 (131854)

There are a few here that have Fibromyalgea. I have PF and TTS....and Fibromyalgea. Yes I think it could be causing a problem but always go by what your doc saids. I haven't had surgery. What kinds of medications does your doc have you on? How are they going to treat your fibro?


Re: Fibromyalgia and PF

Dr Z on 10/01/03 at 15:36 (131857)


From my experience with ESWT and Fibromayalgia the results are exactly how they have turned out with you. Temporary or and no relief. If is my opinion that the results will be poor in the long term with almost all treatments. Why. We just don't know

Re: Fibromyalgia and PF

BrianJ on 10/01/03 at 18:16 (131885)

Shell --

Please describe the symptoms you have experienced during the five years of PF/fibromyalgia. I am interested not only in foot symptoms, but in any other symptoms as well.


Re: Fibromyalgia and PF

Pam S. on 10/01/03 at 22:24 (131906)

To those of you who have heard my story before, sorry for the repeat but I would like to TRY to help Shell.

I began to have foot problems burning etc in one foot back in 99. In addition to the foot problems I was having weakness and pain in my arms and wrists, headaches, and fatigue so bad I could not push a grocery cart. I thought I had carpal tunnel. They thought I had Lymes, brain tumor you name it. I was tested for it and it all came back normal.

The foot pain got so bad I went to a pod who ordered a needle EMG test which showed tarsal tunnel in my right foot. I researched the best orth surgeon in this area and to make a long story, a very long story short, I could not race into surgery fast enought. I remember thinking I could not wait to be put to sleep to be out of pain for a while. I also thought, to myself only, that if my foot were fixed it would solve all my pain. I had not been diagnosed with fibro at this point.

I got the surgery and totally went down hill. It was really bad. Five months later I was diagnosed with fibro, got on the right meds and even thou my foot still flares up my body it so much better. What all I have done would take me a long time to describe. I have worked very hard to get my life back in order.

This is what i think: Men and women with fibro tend to have ONE maybe Two areas that cause them alot of pain and other can be just mildly troublesome. Ours tend to be our feet. We heal more slowly than others but no one knows why. Because we lack or have too much of (I can never get that right) Substance P, we feel pain more severly than others. We are very sensitive types that is for sure.

I have been to several foot doctors since I still have PF problems ( also a pain specialist) and when they ask about the fibro they say they would not do anything - surgery, injection, shock wave etc. There are so many unanswered questions to this syndrome. I have often wondered if my fibro caused my EMG to come back so bad. Who knows. I would say it is worth a try to repeat the shock wave if you tolerate it well but you might want to ask the foot doctors their opinion.

There are many books in the book stores on fibro. Borders is full of them.

Ask me any other questions you wish. I could go on and on but this is probably more than you wanted to know. I hope I answered your question. Yes, I think it hinders healing and yes I think your foot issues are related. I'd love to help more. Warmly, Pam
PS How are you sleeping... sorry guys i cannot help myself!!!I'll stop

Re: Fibromyalgia and PF

BrianJ on 10/02/03 at 16:55 (131977)

Pam --

What meds have helped you the most?

Re: Fibromyalgia and PF

Shell D. on 10/02/03 at 19:12 (132001)

WOW!!! That doesn't sound good! I was hoping that the prognosis was going to be better. But thanks for all of the advice.
The PF has been ongoing for about 5 years. I was running on the treadmill when it all started. Since then I've had numerous different treatments. Physical therapy, orthotics in my shoes, (3 different types)
surgery, ESWT, and now I'm repeating the ESWT later this month. It worked for only about 4 months the first time. I'm a nurse and on my feet for many hours at a time. Right now I'm on short term disability because the PF has gotten so bad. I was diagnosed with the fibromyalgia a couple weeks ago, although the rheumatologists have been telling me that for the past 9 years, but I guess I was in denial. I've finally come to accept the diagnosis and deal with it. They have me on 600 mg Neurontin at bedtime and recommended water exercises. Right now the PF is so bad that I hate to even leave my house! They tried Effexor and Wellbutrin with me, but they made me buggy and I couldn't sleep for several days while taking them. So far I've had no relief from the fibromyalgia pain while on the Neurontin, although I'm sure sleeping better:)
Again, any advice or recommendations would be helpful.

Re: Fibromyalgia and PF

Shell D. on 10/02/03 at 19:22 (132002)

This is for Pam,
What type of medication are you on currently for the fibro?
Your post was very helpful to me and I truly appreciate it.
I'm currently taking Neurontin at bedtime and finally sleeping better at night. They tried Effexor and Wellbutrin but those made me 'buggy.'
My frustration level is at an all-time high right now over all of this with the fibro/PF.
Anymore words of wisdom would be helpful.

Re: Fibromyalgia and PF

BrianG on 10/02/03 at 22:16 (132020)

Hi Pam,

I think what your doing is a great service, don't stop! I see these posts on the foot surgery board quite often. Patients are racing in to be cut, the doctor has told them he'll cure them, like new. After the procedure is a failure, and the patient is in much worse pain, the surgeon tells them that they are the only person this ever happened to, and then drops them like a hot potato !!!!

Please hang out and keep reminding them, if only to get them to search out the best surgeon in their state.


Re: Fibromyalgia and PF

Pam S. on 10/03/03 at 22:15 (132133)

Dear Friends:
Brian, Thx SO MUCH for that comment. I was worried after I posted that I had said too much and maybe scared Shell off!!!!! I really know that that TTS surgery triggered my fibro and I had had signs of it for quite some time. I have been blessed thru the years with such great health and have been so active. However, I pushed it alot and never slept well. I just never took the time to THINK about the fact that I was pushing the envelope. I guess I know myself better now.

Shell, sorry I just checked my computer tonight. Today was cold and rainy here. I felt so tired this morning I went back to bed!

I really understand how frustrated you must be at this stage of the game. I will honestly tell you it took me a year or two to get the meds right. The rheumy started me off on Elavil but I was SO groggy I could not drive my girls to school. I had so much trouble sleeping. after a sleep study discovered I had restless leg syndrome, they put me on Klonopin. That was a miracle drug for me. I am still on it 4 years later. I guess I will have to go to Betty Ford if I ever have to go off it. They tell me not to worry and I am not addicted because I only take .75 at night. I started off at .5. ADVISE:NEVER be afraid to split pills in half...take less if it is bothering you.. you can always go up.

I am also on 400 mg of Neurontin. Very helpful because YES my feet do still burn, some days worse than others. Also very helpful for sleep.

The real turning point for me was when I found not a Rheumy, not a neurologist or our famous orthopedic surgeon but a female pharmacologist who really listened to me. She is a psychiatrist of course but deals with womens health issue. I think she walks on water. She prescribed Celexa first and within one month I was better. The cousin to Celexa came out which is called Lexapro. She thought that would have fewer side effects. ( I am very sensitive to side effects) This has really turned my life around in terms of FATIGUE. It is not a matter of whether I was depressed or not. If you knew me you would never think in a million years I am depressed but I felt so lousy maybe I GOT depressed. Just not functioning well. Even my stomach felt upset alot.It is all so weird. She has told me that there is compelling evidence that Lexapro helps with irritable bowel also, which many with fibro have.

I do alot with diet. Not much alcohol, sugar or white flour. I have a very sensitive bladder so I do not take alot of vitamin supplements. Just magnesiun and calcium I really think sugar is bad for us. I try to eat alot of protein and organic when I can find it.

Exercise is key which is so darned difficult when your feet hurt. I hate the water (it is never warm enought) but I think that water exercise is a good thing. I do the recumbant bike and my own little Yoga routine. Stretching is so important. Massage is too if you can afford it. I had a Neurologist tell me that Fibro is a rich, white woman's disease and laughed at me once.

I really want to help so keep posting for me. Sorry the support section is closed because this is not all foot related. Sorry friends!!! Kathy on here has fibro too. She is really helpful and nice like everyone else.

I cannot stress to you enought that you have to be patient and self advocate. What works for me will not work for you. Not everyone with foot problems has fibro but enough do that it seems odd to me. That is why I think there is a connection... just my feeling.

Take care of yourself, I have really cut back. I do not know what I would do if I had to work. I am eternally grateful for that. Just give in to yourself when you are tired and try not to push it. Take care. Hope to hear from you again. We should maybe start a new post. Warmly, Pam

Re: A few more comments

Pam S. on 10/03/03 at 22:29 (132136)

To Brian: Do you think you might have fibro. Men have it and are often overlooked.

Shell: There is a drug called Ultram many take for pain. I have not tried it but I have friends with fibro who say it really helps their pain. My dr. just thinks it will upset my stomach.

I take the Lexapro at night. It is worth a try for you. It does not keep me up but then again I take other things for sleep.

Treadmill is a bad deal. I was also pounding away on one with hard plastic orthodics in my shoes thinking I was doing everthing in the world right. Other here say treadmills are bad.

There are warm water therapy pools. Such a hassle.

If you go for massage always ASK the massage therapist if they have treated clients with fibro. Too deep a massage can throw you into a flare. There is a newsletter you can subscribe to. I have to be honest...it sort of depresses me to read it. Like I am a freak show or something but it does inform you about the recent research and new meds that are out there. I find keeping busy, not overfocusing on myself is helpful. Sometimes I wish I had a little job but it bothers me to sit for to long or to stand for too long. What to do? HAAAA I just turned 50 and boy life got complicated the second half of my 40's!!!!!!!!!!!!!!!

Re: A few more comments

John H on 10/03/03 at 22:57 (132138)

There is now an upgraded version of Ultram that contains the original ultram ingriedent plus tylenol. Ultram is a pain killer that works within the brain I believe. It has no anti inflamatory effect and should not bother your stomach. It is also pretty much non addictive.

Re: Fibromyalgia and PF

John H on 10/03/03 at 23:00 (132139)

Some effective pain killers that most people do not think about are anti anxiety drugs, anti depression drugs, anti seizure drugs. Pain specialist use these but your average doctor does not

Re: A few more comments

Shell D. on 10/04/03 at 13:40 (132181)

It was so up-lifting for me to read your recent posts. Yesterday was a horrible day for me and I'm really hurting again today. Your sense of humor is great! I truly enjoy reading your posts! Please keep them coming!
I currently take Ultram for the pain, but I'm not sold on it yet. The order says I can take 1-2 tablets up to 4 times a day, but it makes me so sleepy that I've only been taking it at bedtime. So I guess I'm not giving it a fair chance either. I just hate feeling so groggy in the daytime.
A couple of years ago I took Celexa for a short-term panic attack disorder. I had no side effects from it and it made the panic attacks go away completely. I took the medication for about a year and then decided to go off of it since the problem was taken care of. I'm currently considering it again, just for my mood. I wouldn't say I'm depressed, but the longer this fibro flare continues and my PF keeps acting up, I feel myself slowly getting to that 'depressed' state of mind.
The ONLY thing I didn't care for with the Celexa was I didn't feel like I had ANY emotions. It was such a strange thing, but I couldn't have squeezed a tear out if I tried! At this point that would be a bonus!!!! I've surely been shedding my share of tears!
I know what you mean about some of the fibro sites and newsletters. I really feel good about myself when I read some of those stories. Makes me think, 'Hey, maybe I don't have it so bad after all.' Although I have also read some good information too.
I'm scheduled to have the OssaTron done to both feet next Friday, the 10th. This will be my second round with the OssaTron, the first being last December. I think I have mentioned before I thought I was CURED from PF. The treatment went well and I was heel-pain free for 4 months. Then it returned and is currently the worst it's ever been. After reading more posts on this site, I'm wondering if I'll ever STAY pain free in my heels considering the fibromyalgia also. It's just so darn frustrating to think that at 38 years old, this is what I've got to look forward to????? A lifetime of body aches and foot pain? Talk about depressing! I'm a nurse and I'm thinking I may have to look into a career change, although with the fibro acting up like it is, I can't think of ANY career I could do right now.
Again, thanks Pam and everyone else for replying to my post. I feel like a sponge right now and I'm trying to learn as much as I can about the fibromyalgia and PF and the connection with the success rate for treating them both. Please keep in touch.
Shell D.

Re: A few more comments

Dorothy on 10/04/03 at 14:49 (132185)

Shell ~
The only things I know about fibromyalgia are what I have read here and I am no expert on PF or anything else for that matter, but one thing you wrote caught my eye. You said that you had Ossatron treatments last year and thought you were cured, being heel pain free for 4 months - but then it returned, even worse. You may already know this but Dr. Ed Davis here writes about the importance of considering PF in ALL of its aspects which includes biomechanics, for example. I wish I knew the secret(s) about PF and its comings and goings, but since yours was gone and has now returned, it would seem to be very important to look at the WHY. Your job is probably one obvious contributor, but there may be other aspects of your whole biomechanical world that you would want to examine further.
I do hope that you can find lots of answers and help. You know, we - i.e. the country - can't afford to lose nurses! That might be the new career for you: develop a comprehensive help system for R.N.s since they seem to be vulnerable to so many of these problems like PF, back problems, and the like - and we all need their skills and talents so much. Well, you can worry about that some other year. For now, concentrate on getting yourself feeling better. Keep your chin up. So many good people here can help you.

Re: A few more comments

Dr Z on 10/04/03 at 16:45 (132202)

Dorothy ,

It is much more likely to be the fibromyalgia then the biomechanic causing the re-occurrence but Biomechanics is something that should be looked into

Re: Fibromyalgia and PF

dr ben pearl on 10/08/03 at 04:23 (132758)

Based on your first experience I would hold of on the repeat treatnent and see a specialist that dealsextensively with fibromyalgia first