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Anyone out there with Erythromelalgia?
Autoimmune Diseases | Last Active: May 12 7:45am | Replies (298)Comment receiving replies
I seem to be at the end of a flare up in one hand. It lasted several months (winter and cold temps). When my body warmed up in bed at night my would become so itchy and hot I could not sleep. Hand was always swollen and often itchy even in the day with blistered skin on fingers. I have been on all suggested meds, including hydrochloroquine; nothing works Swelling is now down but I have cuts and sores between the knuckle and fingernail and raw cuticles. I have not read about this and wonder if is part of the symptoms.
Replies to "I seem to be at the end of a flare up in one hand. It lasted..."
Amlodipine, nifedipine, and diltiazem have been utilized with isolated reports of remission. Use of high-dose oral magnesium has been reported in 12 patients recruited via an informal survey through The Erythromelalgia Association. Of these patients, 61.5% reported varying degrees of improvement.Aug 30, 2018
Dr. Jay Cohen (now deceased) suffered from EM for many years and did lots of research. Put his name in your browser and you will have access to many of his articles. Also the EM society publishes many articles and have a worldwide membership. I was first diagnosed by Mayo's in 2006 and had some improvement but it came back with a vengeance about 2 years ago about the same time I developed neuropathy. I also have Raynauds. I can go to bed with ice-cold, blue/purple toes and wake up 1 hr. later with hot, red and burning toes/feet. Not sure if it is EM or neuropathy. I use Aspercream with Lidocaine and get some relief. I also take 500/1000mg of Aspirin at bedtime as well as 300 mg. Alpha Lipoic Acid of which I also take 300 mg. in the morning..
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Welcome @linda19. Oh, your hand does look uncomfortable. I'm tagging fellow members @cherman @raebaby @ellen50 @jt67 @susanop @bcoimbra @lacy2 @emishell2022 @wiedd @drolker @susanop @txbren @hotfooted who also have experience with erythromelalgia and can share their tips for dealing with flares.
I'm encouraged to hear that the swelling has gone down. Are your flares often associated with winter and colder temperatures? What are your triggers?