Discussions By Condition: Rare Disases

If it's not fibromylgia then what is it?

Posted In: Rare Disases 1 Replies
  • Posted By: Anonymous
  • May 10, 2007
  • 02:58 PM

I've been diagnosed with fibromyalgia, but I'm sure the diagnosis is wrong. I'm not tired, I don't get headaches, I'm fit (surprisingly so considering how little effort i make to exercise) and can run for miles. I have some of the tender points but only a few.

What happens to me is that relatively low use of - well any limb or joint - means it gets inflamed and sore sooner than it should, and takes longer to recover. I had tests for basically every inflammatory disease out there and they all showed nothing to explain the mildy elevated CRP levels that accompany bad episodes of pain. I don't sleep very well, but that is becase when i stop moving around and walking as I do when awake, my knees and ankles feel just-slightly-too-inflated, as if there is pressure inside them, which is uncomfortable and makes me wriggle constantly to try and relieve the pressure-feeling. I can tell when it's going to get worse because i get tender points on each hip and dry lips. Another associated symptom is dry eyes, which also worsen as a warning sign of a relapse. Sometime if I'm very lucky and hit my body with major intravenous vitamin shots (mostly Bs and C) at this point I can avoid the worst of the muscle and joint pain that accompany bad episodes.

I suspect it may be cortisol-deficiency based. My aucpuncturist thinks so too and suggests that this results from adrenal damage/fatigue caused about 5 years ago when working 18 hr days and eating very little, and has been doing acu treatments to support my adrenal gland which have, over 2 years, taken me from almost crippled and unable to type or write or drive to about 80% better. I am still ot well however, and refuse to take the advice of the rheumatologist i saw who told me to "learn to accept that I am sick and stop trying to find out about it" (still makes me angry!).

Any ideas? Can anyone help? I'm desperate, and I'm pretty ***n sure that I've been misdiagnosed as fibromyalgic.

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  • Too much uric acid? I found this useful site: http://www.westonaprice.org/sitemap.html especially www.westonaprice.org/askdoctor/ - look for GOUT there, it explains about uric acid and helping the kidneys with vitamin A etc. I wrote ideas that worked for me and others at http://forums.wrongdiagnosis.com/showthread.php?t=14299 - post numbers 2 and 6. It works, but I will now have to bring in ideas from the westonaprice site. We need to learn much and then make our own plan.
    Curly Stooge 319 Replies Flag this Response
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