There is a lot about Fibromyalgia that many still need to learn

[Leorah]

Hey all: I've had fibromyalgia since it was diagnosed by a top rheumatologist in 1995 using the tenderpoint test, along with the dr carefully ovserving me walk and do various physical tasks and activities.  Back then, I'd never heard nor read of FM or CFS, and no one else I knew had, either.  A year and a half after the fibro diagnosis, I was tested a third time with a more expensive test for lyme disease and finally diagnosed with having had lyme disease for this year and a half since attending a summer program in upstate New York, in the Hudson River Valley, where lyme disease from deer ticks at that time was epidemic.  I then recieved four months of a daily IV dose of antibiotics and finally tested by this same, more expensive test as negative of lyme disease.   By this time, I had already begun to manefest the severe arthritis undiagnosed lyme disease can and usually does cause.  Several years after this, strange things began to happen to me, such as all four of my limbs, my neck and face becomming very swollen for a few weeks at a time, and having ulcers in my entire mouth at all times, which I continue to have at this time, but which is eased by homemade herbal, soothing mouthwash.  Lupus is very difficult to diagnose, and I was not very good about going to the dr regularly until finally the symptoms were scary and overwhelming and I was finally diagnosed, which involved many kinds of tests, most of which were negative.  I tend to believe that the lyme disease actually caused either the fibromyalgia or lyme disease first, and then the other.  In any case, this would make the fibro I have in the Rheumatological, rather than the Myofacial fibro family, and a fibro that's secondary to another primary disease (lyme or lupus) rather than primary or caused by something not related to these major rheumatiolgical illnesses.  I also have hypothyroidism.

Please read the article below to learn about the two families of fibro, and about primary and secondary fibromyalgia, in order to understand that, though fibro may have similar symptoms for many who contract and suffer from it, it has a very large range of possible causes for each person.  Many get secondary fibro from chemotherapy or a bad car accident, or from another major illness and even a psychological trauma.  Primary fibro is less well understood as to the causes behind it.  Also read in this article about the tender spot testing AND the special type of thyroid test that everyone being tested for fibro must now get.  Though this article was written by a NYC rheumatological clinic, it has so much important info so many don't know about fibro, I felt it needed to be posted here.

I do understand that fibro and chronic fatugue syndrome have all kinds of various connections, I'm not a rheumatologist and am not at all familiar with how they are connected pathologically.  So much of this illness is still so mysterious.  Knowing, though, that some people are indeed "cured" of fibro and others are not begins to make sense once you understand that there are so many causal factors behind any given person's fibro.  I still believe that however a person can manage to stay active, even through water exersize, which feels so great with these types of body pains, has a great bearing on how well you'll do in with pain management and mobility. 


Good luck and blessings to all with any of these illnesses, or who have loved ones with them.  Friendship means so much to chronically ill people, who tend to be abandoned by many due to their limitations and the way they remind others how vulnerable we all are to all kinds of problems.

This week has been the "official" week for acknowledging people with unnoticable disabilities.   

http://www.patientsmedical.com/healthaz/fibromyalgia/default.aspx

[katmoon]

love uu xx

[ravensong]

Nice to meet both of you . This isa great post . I went thru all the tests in 95 too . I've been tested for lyme and thankfully don't have it . I just found this part of the forums so I'll be around.