I got my official diagnosis this week after several years of trying to figure out what was wrong with me. I've actually had joint pain of some kind since I was a child. I was never diagnosed with arthritis but had chronic levels of Epstein Barr virus which seemed to put me in a mono like state in flare ups of some kind. It was really weird. I went through a period between my late teens to about 26 with no major health problems.
And then I had back surgery in 2002. All seemed to go okay with that...in fact better than expected. But somewhere in the midst of recovery I started having "weird" problems with my hands which was actually Raynaud's. By the spring of 2003 I spent three days over a spring break taking care of a friend's kids. We spent our entire days in the sun, on the beach. I was sick by the end of the third day. And it's like I've never recovered.
I saw many doctors who were terrible. They either didn't listen or basically blew me off. I got so many different answers to the same questions I wanted to scream. I saw a rheumatologist in D.C. in 2005 while I was up there and he put me on Plaquenil with Prednisone and as I was going down off the Prednisone, I ended up in the ER with major breathing problems. My dose of Prednisone was quadrupled and coupled with the Plaquenil and the Prednisone...I actually started feeling good. But since then, things have sort of returned to pre-prednison and even pre-plaquenil days.
I went to the doc this week after I discovered a lesion in my mouth...only to find out there were more than I knew about. This was the final straw I guess in the diagnosis. The doctor put me back on prednisone but has left my Plaquenil at 400 mg a day.
I guess the biggest struggle for me is trying to balance my work with keeping myself as stress free as possible. I know what stress does to me. And it's not good! I guess that's where I'm at now. Newly diagnosed and trying to figure out how to take care of myself. I'm currently trying to find a new rheumatologist as I've moved from D.C. and the rheumatologist I've seen here is at the medical school and this hospital/med school serves a 29 county area! Needless to say...getting appointments is tough. So that's my next step...find a rheumatologist here in NC.
Glad this site is here. Thanks for listening!
Thanks for listening!