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Re: fibromyalgia

Posted by jane on April 19, 1999, at 19:29:29

In reply to Re: fibromyalgia, posted by saintjames on April 19, 1999, at 15:54:24

If you've got it, you don't want it :-)
Having had FMS for ? years and diagnosed 4yrs ago,
I'll tell that it is no treat but it is NOT the end of the world, although some days I wonder.
I'll give it my best shot at explaining, but
part of FMS is "brain-fog", so no promises.
FMS is a form of "arthritis" that does not involve the bone/joint but rather the soft tissues located around joints, skin, and organs.
FMS is treatable,manageable (?), not curable(YET), and not fatal.Its characteristic symptoms
include pain in most parts of yur body, chronis fatigue, sleeplessness, depression and can inclued a number of other symptoms/syndromes.
W/o overwhelming you here with details I point to some very good resources:

***Arthritis Foundation(800)283-7800
a v. good national org.. It will direct you to local resources, support groups, phamplets,etc

***A Local Support is a must!! Here is where you find out the real scoop-and people that believe you when you say 'I hurt'. FMS doesn't show up in Xrays and there is no blood test (soon?) for it.
It is a diagnosis of exclusion and an "experienced" MD.

***An FMS!!! Rheumatologist-extremely impotrtant!!
DO NOT assume that all rheumatologist are good FMS doctors. Check with the support group-they'll know the good MDs within 200 miles. :-)

***Subscribe to several newsletters-again check with the support group or the local arthritis chapter but some good ones are:
Fibromyalgia Frontiers
(esp.ask about Dec'98 FMS-summary issue !!!)
Fibromyalgia Network
There are other very good newsletters, these are just starting points.

***One of the best books that I found-don't know if it has been updated since 1996 -
Fibromyalgia & Chronic Myofascial Pain Syndrone
by Devin Starlanyl,MD and MaryEllen Copeland MS

FMS research and treatment has made great strides in the past five years. Five years ago, it was hard to find and info about it and now there are volumes!!
Since this is a "psych-babble" site, I would like to say that two key symptoms (besides widespread pain) are: depression and what we refer to as
FMS "brain-fog". Once you understand the bio-chemical aspects of FMS you will understand why these occur (it helped me understand and accept why my "brain" didn't work the way I wanted it to)

I can't stress enough the importance of a good "FMS" doc and a FMS support group.!!!
Hope this helps -- jane




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