Hi Everyone -I haven't posted in ages, but I check in pretty regularly. I'm still flying around in the land of limbo somewhat - although I did finally get in with a rheumy I am happy with and am being helped by. He wasted no time treating me for bursitis in my hips (after previously being told my pain was all due to fibro) and referring me for help with my back and a blood issue, which we're still working on. After finding out I have Celiac disease, I've been gluten free for very nearly a year. I think it has caused some general improvement, but has not been the solution to all problems, that's for sure.
Previous (2nd) rheumy attributed everything to fibro and told me to cut back to one dose of Plaquenil a day, which I did and things went along alright for a few weeks, and then I started flaring....just in time for my son's wedding in early June, which required traveling. I went back to 2 right away then, but it was too late to save me completely - although I did enjoy the important moments of the wedding and family time - the general stress and traveling was rough and I ended up in the ER the day before we were to fly home. New rheumy (3rd time is the charm) thinks I have sero negative RA with connective tissue overlap, (along with fibro) told me to stick with the Plaquenil, and I can use short Prednisone bursts if similar scenarios like the wedding/travel arise.
I am feeling better now after a very rough spring and start to summer. I have increased my walking distance (a block and a half!) and enjoy less pain doing it.
The fatigue has lessened, but I still find I run totally out of steam in the late afternoon and generally have to limit activity. Like Lynn - I'm learning that pacing and rest periods are great tools. I also have a hard time getting to sleep before 2 AM and up before 10....but I'm no longer working so what the hey. I was born and raised out West - if I still lived out there - I'd be on a perfect schedule!
I am working on toning up some unused muscle also - as well as trying to increase social activity and reconnect with folks I've just been unable to keep up with. I don't know what the course of progress will continue to be, but I'm sure happy to be feeling some improvement and am trying to enjoy the summer as much as I can and hope for and work toward the closest to the old "normal" I can be.
Sure am grateful for this forum and all it's good folks.....hope everyone is enjoying a pleasant summer!
diagnoses: mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins