I still have the UCTD dx, with suspected lupus and/or other AI's - and the rheumie continues to test every six months. (Does that seem "usual" to keep testing for all those antibodies that often?) I've been on Plaquenil for nearly 6 mos. and the last couple of weeks (knock wood) have been much better. Still not sleeping very well - and still have pain and stiffness, but the fatigue has improved, my hair stopped falling out, and skin got better. Sensitivity to sun is worse, however. But at least this summer, I've made the connection to the sun (and flourescents) being a flare trigger (thanks to all of you!) and I faithfully apply the sun screen. Even my husband reminds me to get out of the sun now when I forget.
I'm honing my pacing skills - miss the days of just tying into projects come what may and being able to get so much done - but I am getting better at avoiding the bad crashes. My fibro got pretty active as well this past winter - but there was a lot of stress and I tried to resume taking Lipitor in Feb. - which just didn't work and triggered some awful pain and malaise. If I could find a way to eliminate the back pain I would be a changed woman! Found out I also have Osteoporosis. Rheumie wants me back on mega Vit D in order to begin Fosamax.
I've given myself permission to say "no" when I need to. I've been gradually building up my walking time and stretching reps. A slow process, but every little bit more that I can do is it's own reward. My fondest wish is to be able to travel again without flaring, but basically, for now, - it sure feels good (1 1/2 yrs later) to not feel so bad! This forum has been a Godsend, and has helped me CALM DOWN about the whole thing. Really helps to know others understand.
My hat is off to everyone coping w/ these health issues while raising children and/or grandchildren! Good luck this summer, Patty!
diagnoses: mono 1972; postviral CFS 1997; fibro 1998; UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn