My doctor suspected lupus and RA at the beginning, but my blood work was always perfect, so the doctor couldn't treat me. Then I kept getting sicker and sicker for the next couple years, until I was nearly immobilized from the jaw downward. At that point I was diagnosed with polymyositis and told that I was a couple weeks away from dying. Even then, my blood work was great, except for ESR (sedimentation rate). It still took a couple more years before the skin biopsies showed lupus. Autoimmune diseases are quite often a source of frustration--for us and probably for the doctors as well. The frustration was what spurred me on to being proactive about my health. I started doing online research and keeping a food log, etc., in order to get some relief. So sorry you're in the midst of this "can't figure out what the problem is" phase. Best wishes to you for getting answers soon.

nanny, thank you so much for your reply. I am going to stay active in trying to figure out what this is. Luckily, the itching and pain is almost gone. I think I will start doing a food journal and see if that helps. :)

(((hugs)))

Nanny, what was your sed rate in the beginning. I have only a slightly elevated sed rate, but I also have APS/Hughes Syndrome. There are days when I feel like an 85 year old man. The Rheumy will no longer see me. He thinks I'm a nut lol. He dismissed everything as being due to my type 2 diabetes. But for the past week my blood sugar has been normal but I still have constant headaches, brain fog, lethargy, issues like dropping cups and plates, dizziness, and chest pains. I know men don't usually get lupus, but I also know that lupus goes along with APS/Hughes Syndrome according to various websites. Also, my C3 and C5 are slightly elevated which Is not the case in lupus. All of these immune diseases are very hard to pin down.

@Jeremy1999
Don't you love it when doctors think "it's all in your head"!!! My sed rate was either 94 or 97, which was a result of inflammation in my muscles. Before getting a diagnosis, I was told that I had synovitis, blood clots, popliteil/Baker's cysts, etc., but blood work was always good. By the time neuros diagnosed me with myositis, I was nearly immobile from the jaw downward (almost died), so they started me on 100 mg. prednisone daily for a week, and then dropped me down to 70 mg. for a short time, and then to 60 mg. for longer time, and then we started tapering. The neuro told me that I would be on prednisone for life, but after 3 years, I was able to wean off it. What a blessing! Of course, I use lots of supplements and watch what I eat, in order to keep inflammation at a lower level. It's a struggle sometimes, but thankfully the Lord has given me success in staying off prednisone. Yay! Best wishes for finding what works for you.