who treats fibromyalgia?

[Sooki]

Maybe someone on this list will know:  My sister has RA, MS, and fibro.  She has a good neurologist for the MA and a rheumy for the RA, but neither one seems comfortable working with the fibro.  Is it a special kind of rheumy?  or the Pain Clinic?  some other doctor?   TIA

[Nancy60]

I would have thought a rheumy or neuro too, but if not then a pain clinic would be a good choice.  I do know that the theory of what is going on with fibromyalgia is that the pain signals are being misinterpreted in the brain leading to widespread pain so a neurologist or psychiatrist might also be able to treat.  Lyrica is a psych med used with some success in Fibromyalgia that targets how the brain neurotransmitters work to lessen the misinterpretation of pain going on in the brain.  I think that is why treatment with other psych meds (antidepressants, antianxiety meds) that work on the neurotransmitters have also had some success.

[Daisy1234]

My sister has severe Fibro and it was her Rheumy who diagnosed it and also treats it too.   There are some Rheumys who actually specialize in treating Fibro, you may wish to check the National Fibromyalgia Association Website for tips.  http://www.fmaware.org

On their site they state that,  "An empathetic physician who is knowledgeable about the diagnosis and treatment of FM and who will listen to and work with the patient is an important component of treatment. It may be a family practitioner, an internist, or a specialist (rheumatologist or neurologist, for example). "

On their resources page they also list Bureau of Primary Health Care who's Website provides referrals to health care providers across the country (U.S.).

U.S. Department of Health and Human Services
Health Resources and Services Administration
Parklawn Building
5600 Fishers Lane
Rockville, Maryland 20857
(888) ASK-HRSA

http://ask.hrsa.gov/pc

Hope this helps,
Daisy

[mews]

Could be that Doctor doesn't recognize Fibro as an illness. My first Neuro said to me "maybe you have Fibromyalgia, not that I believe that's a illness"! I almost fell over, he couldn't find the clues if they were written on my forehead, foolish man !!

Mary

[lynnmarie219]

My rheumy diagnosed and treats my fibro...but I suppose any doctor who is knowledgeable and open minded enough can work with fibro patients!

[newhorizons]

Sooki, Believe and open minded to the Fibro concept...is the "key!"

Fired my local rheumy for about the same statements as Mews stated in a couple post before mine.

Don't get me started on rheumies and their 'outlook on life'; just remember Sooki and sister, they're just a human like each of us...nothing special...ahhhhh!

Light bulb moment!     Keep looking until you find one that recognizes Fibro.

Had to go to JH before my Sjogren's was ever diagnosed...same rheumy... and, I educated him about SS and  set up infomation board in his front office about Sjogren's and paid his first year medical subscription to Moisture Seekers. Instead, of hitting him over the head with a hammer!

Four or Five years ago just didn't go for my appt and had intented to write him BUT decided to move on, One day at a time.

[Joe S.]

I went to an alternative pain clinic for Fibro after a Dx from my neuro. Other members went to Sister Kenny in Mpls. They came back worse than before they went.

[Sooki]

Her doctors know what fibro is, they just don't know what to do about the whole combo thing.  They think she's one of a kind having all three diseases.  From reading the posts here, I doubt that.  She's is in pain and neither one is thinking they're the one to deal with it.  I haven't heard good things about pain clinics (although I know they usually get the referrals no one else can help)  Thanks for all your ideas.

Daisy: Thanks for the link - I'll forward her the list for Colorado.

[Sha]

The answer from dr peng was he would have dx me with fibro if there were no other dx's he could find as I had 18 pressure points (don't know how many there are, but i know it was enough he asked if I had heard of fibro and gave me a pamphlet).

He didn't even want to talk about any of the stuff that didn't come back with positive blood work, like lupus, RA, and obviously fibro doesn't have blood work they can do on my follow up visit. He thinks it is a catch all if he can't find anything positive in blood work, which mine is inflammatory axial  spondyloarthritis and secondary sjogrens,  but I believe i have more lupus and RA stuff, definitely fibro since he would have dx me if I didn't come back positive for the others he did dx me with.

Why he gave me pamphlets and told me to do research on the others i will never know as i am never going back to him!!

My friend takes lyrica for it. She says it's better than nothing, but she has a lot of other issues too, so takes other pain meds.

Good luck!

Sha

[Joe S.]

Fibro Management -  breathing exercises, meditation, acupressure, reflexology, Reiki, C, B's for stress, range of motion exercises minerals for stress(Tai Chi, isometric), diet.

When studying this through forums and in the support group, there appeared to be six different sub categories of fibromyalgia. These categories seemed to correspond to malfunction of the six points of the Krebs Cycle. Mycoplasma's were also brought up as the cause of these malfunctions in European and Australian studies. Mycoplasma's my old GP related to L-form bacteria. He did not know what was going on because I would find a study, direct him to it. He would read it and a couple of months later it could not be found when he tried to review it and copy it for other patients. It happened over and over again.

There are only 18 trigger points, Sha. If you have 11 out of 18 you have it. My old Neuro said that he thought the term myofibrotosis was a better definition as he believed that it was caused by fibrous growths from muscle to muscle through the bursa.

[dainbramage]

I was having unknown flu-like symptoms and I was very stiff and pained. My rhuemy decided with all the pain I have, she just put me on cymbalta, not lyrica (TOO many side effects). No pressure points testing at all. Let me tell you the cymbalta has helped. However, neuro wants my vit d level above 50 because vitamin d helps with muscle pain. And when your pain is so high it waste vit d from your body.