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!
Welcome to the forum. Glad to hear you finally had a doctor listen to you. I went through a lot of doctors over the years that blew me off as well or that would only treat my present symptoms and ignore my history. The most important thing is to find a rheumatologist you like and feel comfortable with because that person will be very important in your life.
Figuring out what your body needs is trial and error. I was officially diagnosed in Dec 2005. I haven't been working at all but am finally feeling like I can go back to work part-time. Not sure about full-time ever again at this point. At first I had to sleep about 14 hours a day. Now I can function well at 10 hours with a short nap mid-day. I don't know if I will ever be a 7-8 hours per night person ever again.
Also, stress is really damaging for people with Lupus. It is so important to reduce the amount of stress in your life and if you don't cope well with stress then learn how to cope better. Learn breathing techniques or be sure to clear you mind by meditating every day or something like that. I have been doing walking meditations. Every day I get some exercise and walk around the lake at a park near us and try not to think about anything...nothing at all. It's difficult at first but soon you learn how to just push thoughts out of your head. It is helping me deal with the stress in my life that I cannot eliminate.
Be sure to take your meds and if you feel like you need to rest, then rest. Good luck figuring it all out. If you have any other questions, everybody here has been very helpful!
You certainly learned the sun -> flare connection the hard way, so sorry to hear that!
Sometimes having a label to put on the condition helps in and of itself. I hope you'll be ablle to manage the stress and keep things under control. Stress and sun - the two biggies that can drive us right into a flare....sigh.... and which seem ever present!
Be sure you get yourself a wide brimmed hat - if you haven't already. One you cannot see through - no loose weave straw! And wear sunscreen - spf 30+ . THat should help a lot.
Hope the move to a new locale ends up being the "just right" thing, it HAS to be slower paced than DC!
Glad you've joined us,