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Erythromelalgia treatment and autoimmune
Hi all,
I (31, F) have been experiencing Erythromelalgia for about 1.5 years. I was diagnosed officially about 6 months ago.
-Asprin didn’t help
-Magnesium does seem to help.
-I have symptoms the worst in my hands, then feet, and also at times get redness on my face and ears as well.
I’ve had various other random symptoms over the last 10 years which lean towards being possibly autoimmune related. Because of this, I recently was referred to a rheumatologist who flat out denied that Erythromelalgia is related to or coincides with autoimmune conditions. I was flabbergasted by this.
So now I’m at square one, and am receiving no treatment for my EM. Any insights or suggestions? I feel stuck and frustrated.
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It's hard to find anyone who can recognize or treat erythromelalgia, but I have been help by the fact that a friend who is a retired but very experienced dermatologist recognized the disease from my skin and other symptoms. He sent a paper that suggested cold. At night, or at other times when it is bad, I wrap cold, damp terry cloth strips interlaced between my toes and then wrap larger cold packs around my feet wrapped in a flannel cover with a Velcro strip to hold it on. When I do that the pain and burning begin to subside and I can usually go back to sleep within an hour. I am an 80-year-old female with very few problems throughout my life until sudden onset of autoimmune issues a few years ago.
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1 Reaction@piemonte Yes I have this my hands and feet flare up and get red and hot, I have trouble sleeping its making me depressed. I tingle and burn all night. Been ut on a antidepressant. This gives me nightmares.
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1 ReactionTwo remedies that have helped me deal with the burning. I rub Biofreeze cream on my feet before I go out to run errands. Biofreeze helps with the burning.
I keep a dampened dish towel in a plastic bowl on my bedside table. If my feet start to get hot, I wrap my feet in the cool damp towel.
I also use a mister to wet my feet if I’m reading or watching TV.
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2 Reactions@piemonte I forgot to mention that I never sleep under the bed covers. I sleep on top of the bed covers under a fleece blanket. My feet are exposed so they don’t get hot.
I looked at my Biofreeze tube. It’s actually a gel. I hope this is helpful.
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1 ReactionWhat is the best antidepressant for Restless legs and Erythromialagia?
My rheumatologist said some people with erythromalagia have benefited from taking the antidepressant, Cymbalta. Unfortunately I cannot take Cymbalta because of interactions with other drugs I’m taking.
For 20 years I thought I had erythromalalgia. I had sores on my toes and couldn't cover up my feet in the winter. It later turned out that it was chilblaines. My feet couldn't adjust to changing temperatures. I had one dose of Nephedipine, that is also for my high BP, and Inever ha a problem again.
@raebaby thank you! I will certainly look into this.
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1 Reaction@raebaby I still takeNephidpine every day; it juststopped the symptoms with the first dose.
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1 ReactionHi! I recently was diagnosed with this and no doctors seem to kniw what to do. They have started me out on gabapentin, but it seems to be doing nothing and with the onset of sunmer (heat being the main trigger) I am wondering if you have found anything else that has been helpful? All the topical creams have proved not useful 🙁