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.

Reply Flag this Discussion

1 Replies:

  • 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
Thanks! A moderator will review your post and it will be live within the next 24 hours.

Signs of a Psoriasis Flare

Know the five types of psoriasis and how to spot flares.

How Diabetes Medications Affect Your Appetite

Newer diabetes treatments can suppress appetite and aid weight loss.

What to Do For Dry Mouth

Try these tips to get your salivary glands back into action.

The Painkiller – Constipation Connection

Constipation is a common side effect of opioid and narcotic pain medicines.

9 Signs of Sensitive Skin

Is it sensitive skin or something else?