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Erythromelalgia: What medications or therapies have helped you?
Autoimmune Diseases | Last Active: Dec 27, 2025 | Replies (33)Comment receiving replies
Not much helps and I also have Raynaud's and developed neuropathy about 2 years ago. Dr. Jay Cohen was a dermatologist who suffered from EM for many years. (he has since passed from something else) He tried many meds and natural products and so have I. Some helped and others made it worse. You can find his publications either under his name or thru the Erythromelalgia Ass. website. I use Asper cream with Lidocaine most nights on my feet. I helps somewhat with the burning for a few hours. Sleeping is very difficult. Hope you find something that helps.
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@dipperlip1
Hi, when I read your post from 2022 about being diagnosed with EM, Raynaud’s and your toes swollen red and burning, I felt as if it were my words. So hard to get good rest, can’t say how many times I’m running cold water on them just to get to sleep. As you said, swollen and painful when your feet hit the floor then better after a few hours, all to start again by afternoon. I can be sitting in a recliner with feet up and watch and feel them swelling and hurting. I use to complain when they were so cold I couldn’t get them warm but that part is a breeze now. Mine are hot & swollen 75% of the day if not more.
Have you found anything that helps? Dermatologists gave me creams, didn’t help; podiatrist gave me cream that didn’t work and told me to quit smoking or I’d lose my toes because of micro-vascular disease. I can see that happening with Raynauds but when I told him I put my feet in ice water to get relief he said well that’s just the opposite, what about hot water. NOT when there red & swollen, can barely stand warm water.
Mine started in April 2022 @ 52 yrs old which I find strange. I did have Covid in Jan prior. Sorry I’m writing so much, I joined group to see if I could get in touch. Can I ask if your a smoker? I know I need to quit but won’t be in such a rush if your not. Not even sure how I see messages/replies on here yet but hope to talk with you soon. So sorry you’re dealing with these AWFUL, PAINFUL symptoms.