Quote:
Originally Posted by Watercolor
Interestingly, the rheumatologist said that if you think you have fibro, you probably do.
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The path to a diagnosis of fibro, sure can be an interesting one. An emergency room doctor once made a passing remark, when I told him that I was distressed that guaifenesin was soon to be going OTC, and would no longer be available by prescription because it was much, much cheaper as a prescription drug because of my insurance (I paid like $2 for a month's supply). I was taking the guai daily for sinus issues, and the ER doctor said that my pain symptoms sounded a lot like fibro and that some doctor was doing research with guai helping fibro. I didn't really give it a lot of thought, especially since all I knew about fibro was that it was supposed to be psychosomatic (hey, I had no reason to know any better).
When the health issues got worse, I still didn't think fibro until a friend online (we met on a doll maker's website) with fibro and MS told me one day "you have fibro." I thought she was nuts, but she sent me a bunch of articles and books and web addresses, and after reading them was convinced she was right. And yet, I never mentioned the possibility of "fibro" to any of my doctors until I received my first "official" diagnosis, for fear they would suspect that I was a diagnosis-seaking hypochondriac.
I don't know if my WI doctors are much better informed than my IL doctors were or I just got lucky, but I've had a lot more luck with the doctors in Northcentral WI. One thing that I never had a doctor look for in IL was vitamin D deficiency. I didn't learn that vitamin D deficiency is common in folks with fibro until after an endocrinologist I'd been sent to checked and found it.
There are so many factors to this condition, and it no doubt has many different causes, as the symptoms may be more a health cascade than a single disease process. If it is related to sleep deprivation, thousands of factors can contribute to that. Doctors are still learning, and fibro patients are often learning faster. Whenever you're in a situation where the patients often know more than the doctors, it's quite frustrating. My aunt is in a similar position, because she has polycistic kidney disease and the even rarer polycistic liver disease. Doctors don't know whether polycistic liver is a seperate disorder, or whether polycistic liver is an inevitable part of the disease process that hasn't been seen before because polycistic kidney disease patients in the past, rarely lived long enough to develop polycistic liver. With modern advancements that are keeping pckd patients alive longer, more and more of the polycistic liver cases are being seen.
Whether you've got a terminal disease or something like fibro that is life-altering, but probably not life shortening, it's tough to hear your doctor say "your guess is as good as mine," but I'd much rather hear that than "there's nothing wrong with you," which some doctors seem to say when they really mean "I don't have a clue," but don't want to admit it.