I am so glad to find this site. Reading these posts makes me feel I am not alone in my symptoms, and they are NOT all in my head.
Looking back to my childhood, I feel that I may have had symptoms then. I remember having unidentified fevers with aches, rashes, and mouth ulcers. Fevers would pop anytime I was stressed.
About three years ago, I was working for a chiropractor and he tested my WBC, lipid panel, and CRP. My CRP was extremely high. He said that it is a very broad test and didn't test for anything specific.
Two years ago, I was working for an internal medicine (now my doctor), and complained of many aches and pains, but because I had no insurance at the time he didn't do any testing and said that I may have FMS. Every so often, I complained of a rash on my forearm that he said was some kind of eczema or dermatitis. I never connected that the rash was worse in the sun. In addition, I have periodic rash on scalp and forehead with hairloss that gets worse in the sun. I have constant severe dandruff that has not been under control with T-gel shampoo. Also, I have had many sore throats with low-grade fevers that others in my family never catch.
Last week I had to see my doctor about sleep apnea, I made sure I wrote a list of all the symptoms I was having or at in the past. It didn't matter if it was insignificant. I now have insurance. I want a proper diagnosis. I don't want to accept the FMS until tests have been done. FMS is diagnosed by further testing, usually negative testing.
My list included:
1. Pains in at the base of my thumbs, wrists, fingers, elbows.
2. Chest pain with breathing (recent ER visit with pleurisy and in June).
3. Rashes on arm, scalp, and leg; increase with sun exposure. (arm and leg rash not present at visit)
4. Redness on nose and across cheeks and forehead (was not present at visit)
5. Heart palpitations; racing heart of 120 bpm
He said that he was concerned of an autoimmune CTD such as lupus. I will go a get the tests done tomorrow. As much as I don't want to have an autoimmune disease, I would like a diagnosis that doesn't make me feel like it is my head; something a test will show. I know this sounds odd, but dealing with this for years has made me feel that I am going crazy. The doctor did say that even if the tests turn out to be negative, it does not mean that I may not be "brewing" an autoimmune disease, I could be slowly developing a disease and he may have to run the tests more than once.