You were all so kind in replying to my last post so I thought I'd come and give a little update. Jen and Maria, you mentioned fibromyalgia as a possible explanation for some of my symptoms so you might find this interesting.
I saw my rheumatologist this past week. I have all sorts of ongoing symptoms so it's always hard to figure out what I want from an appointment with her or any of my other doctors. What I really want is answers and a diagnosis, but right now I would settle for some good symptom management. I never get either!
My rheumatologist listened to me describe my ongoing issues like the tingling/burning, muscle and joint pain, GERD, migraines, flu-like feelings, skin changes, and so on. She did a brief physical exam during which she pressed on a number of areas (neck, shoulders, hips, etc.) and none were painful. She said that my story and the fact that I am a 30-year-old woman make her believe that I may have fibromyalgia. Even though I have a high + ANA which indicates autoimmune disease (or rarely, cancer or infection) she said "I don't think the presence of those antibodies is the cause of your symptoms". Okay, that's clear enough. She explained a bit about what fibro is and that the treatment would be the Lyrica I'm already taking (from the neurologist) and that she'd follow up with me in 3-6 months because it would be interesting to see whether I develop a rheumatic disease (like lupus) down the road because they'd uncovered these antibodies in my bloodwork that means I have some sort of autoimmune process going on.
I asked a couple questions along the lines of "But could fibro explain...?" and then I went home. I know fibro is very real and I'm comfortable with being diagnosed with it AS LONG AS I ACTUALLY HAVE IT. I looked it up online later and I really question the diagnosis. She didn't actually give me a diagnosis though; she just said she thought I had it. What confuses me is that I had zero tender points out of the 18. Also, I read that since fibro is a diagnosis of exclusion, the doctor must exclude other similar diseases. The rheumatic diseases (lupus, scleroderma, Sjogren's, RA, etc.) have definitely NOT been excluded. If anything, they have been shown to be a likely culprit because I do have this positive bloodwork. My levels on the ANA test were in the higher range and I've been told many times that levels that high are significant. Lower positives can be meaningless. I also once had a positive rheumatoid factor though it was negative the other 2 times it was tested. The ANA has always been positive (tested 4 or 5 times).
I am very frustrated with the attitude of "If we don't know what you have, you must not have anything" and now that has morphed into "If we don't know, you must have fibromyalgia". Like I said, I am not in any way against the diagnosis if I do have it, but at the very least I think I might have fibromyalgia plus an autoimmune disease. That happens a lot.
So, that's my fibromyalgia update! I was told to take the Lyrica, sleep, and exercise. I will do my best to follow those recommendations (still struggling to exercise with my 3 young kids and don't sleep terribly well for the same reason), but I feel let down.
I love to hear your thoughts on this,