Erythromelalgia / Erythermalgia
Has any here been diagnosed with erythromelalgia secondary to their autoimmune disease (also called "erythermalgia")? I was just diagnosed with this (they still haven't figured out what my AI disease is), and the doctors think it's secondary to my unidentified autoimmune disease. (There are cases of erythromelalgia reported secondary to lupus, scleroderma, dermatomyocitis, pernicious anemia, and other AI diseases.) Erythromelalgia is essentially reverse Raynaud's: my hands and feet (and face and knees, too) turn bright red and puffy and tingle and burn like a sunburn whenever I am the slightest bit warmed or stressed. I can't go out in weather above 60 degrees without flaring. It's kind of awful. It flares up even when I take my dog for a short walk.
Erythromelalgia is apparently quite rare and has no real proven treatment. All I can do is elevate my limbs and hold ice packs all over my body. I am wondering if anyone here has dealt with it, and if so, how? My doctors have given me very little hope: they say it's here to stay, it tends to progress and get worse over time, and there's no established treatment (though they can randomly throw drugs at it to see what works; so far, nothing). That said, my doctors haven't seen a case before me. So, any help anyone has is hugely appreciated.