Do your hands or feet get bright red and hot with burning at any time during the flare ups? If they do, look up erythremelalgia and then mention it to your doctor. This happened to me and is still happening after being diagnosed with mono in March of 08. It is now suspected I have an autoimmune disorder, but erythremelalgia is pretty obvious if you read the symptoms, you will know if you have it.
I checked out the erythremelalgia but I don't think I have that. I know I don't have lupus or mono either because they checked for those and a bunch of other stuff.
Auto immune disorders effect everyone on my Mom's side of the family. From RA to thyroid issues. They checked mine because it was enlarged but the blood tests came back "normal". I'm just trying to figure out what in the world is going on in my body to make both of my hands hurt...to both of my knees...and now ankles, it's definitely a joint thing. However, I am starting to get relief from the steroid I'm on so that makes me wonder even more...what in the world is happening...???....
Have your read up on Fibromyalgia? Reynaud's syndrome? I don't mean to just throw out a bunch of disorders to you, but it sounds like you're web savvy and familiar with your own symptoms. Fibro is exhaustion/sleep disorders, overall body pain and 11 of 18 tender points. No blood test for this, just something a Rheumatologist determines through a thourogh work-up. Raynaud's is a secondary condition resulting in circulation issues in the feet and hands. Best of luck to you in your search for relief and comfort.
Has anyone considered osteomalacia? I am just learning about this disorder, but it often gets misdiagnosed as other pain "syndromes".
I also ran a C Reactive Protein of 26. Now I'm having mildly elevated Pancreatic enzymes (amylase and lipase) for over 6 months. The pain and other widepread symptoms are awful. Just found out I am vitamin D deficient - and know I had osteopenia 10 years ago at 35.
Trying to put the pieces together. Anyone know if osteomalacia could be behind a lot of this?
Update. I have Lyme disease. If you have no diagnosis. This is one you will want to look into. The best I can recommend for information is a movie called Under our Skin and the site ILADS. I live in a state that the CDC considers low to non-existent for Lyme disease. There are no invisible barriers that make it so ticks do not cross state lines. There are at least three cases in my state yet they aren't reported to the CDC because currently the CDCs guidelines leave so many Lyme patients out of the loop. At the very least, there should now be at least one case in my state for 2009 -- me, since I have tested positive according to the CDCs narrow standards for the "acute" Lyme disease phase.