I'm new-ish here (mostly lurking, posted a few times in various forums) and I know you guys are really good at answering questions or guiding to places with answers. I'm kind of worried about new symptoms and I am interested in hearing opinions and/or experiences from you guys.
After two years of deteriorating health (I'm 43), I was diagnosed with Fibromyalgia in February 2013 (by the end of the tender point exam, I was curled up in the fetal position and begging her not to touch me any more). At the time, my rheumatologist said I had a positive ANA at 1:160 (speckled), low C3, rheumatoid negative, low vit. D, borderline low calcium. "So," she said, "You don't have Lupus yet, but we'll keep an eye on it." We've been medicating for the Fibro (amitriptyline, Zanaflex, Ambien, Nuvigil), I cut back to part-time at work, I've been doing light-to-moderate exercise for 20-30 minutes every day. I also have pre-existing Hashimoto's thyroiditis (over 10 years), but my thyroid levels are checked every 6 months and I'm where I'm supposed to be (and more importantly, where my worst symptoms go away, and after 10 years, I've gotten really good at guessing my TSH based on symptomology), and she said that the ANA might be reflective of the autoimmune thyroid problem.
Flash forward to the last couple of months. My symptoms have changed -- well, not changed exactly, but now I have a bunch of NEW symptoms I didn't have before. I'm more tired after doing less. The FMS pain always has been worst in/around my shoulders, hips, elbows, and knees; now that pain has continued, but it's moved down, so that I also have pain and stiffness in my ankles, feet, wrists, hands, and fingers. I get pounding pressure headaches that medication doesn't help, almost like a sinus infection except I don't have a sinus infection (I usually get 2-3 sinus infections a year, so they're a familiar beast). My skin seems to randomly turn pink in various places, like I have a sunburn except I haven't been in the sun (or even outside) -- upper arms, chest, knees, especially after exercising (and I don't mean RIGHT after exercising, I mean it's still there an hour later). It's worst on my face, on my cheeks, the end of my nose, and my chin, and it's also hot to the touch (although I don't feel hot or feverish). At the same time, my toes will get VERY cold (cold and painful feeling to me and feel cold to the touch) and turn pale, then get reddish as they warm up. These things come and go, constantly playing peek-a-boo, unlike the fibro stuff that seems like it's fairly constant. It'll be present for 30 minutes to 2-3 hours, then go away.
I know that FMS and Lupus are commonly comorbid (30%?) and that sometimes when patients have Lupus, they're later diagnosed with Fibro, but how often does it happen the other way around? I admit I kind of have Lupus on the brain because one of my friends was just diagnosed, but I haven't forgotten that "you don't have Lupus YET." At the time, I didn't pay it much attention because fibro was clearly the right diagnosis. So I don't know if what's been going on is just a new face of Fibro, or a different face altogether. My rheumy took blood again this past week and I'm waiting for the results. I'm set up with my endocrinologist to have a cortisol tolerance test later this month, too, to see if that's a factor. But the waiting is awful! How do you guys take your minds off of the tick-tock-tick-tock of the waiting game?