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Anyone out there with Erythromelalgia?

Autoimmune Diseases | Last Active: May 12 7:45am | Replies (298)

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@johnbishop

Hello @revisl, Welcome to Mayo Clinic Connect. I don't have any experience with Erythromelalgia but I found a few articles you might find helpful until other members can offer some suggestions for you.

The newsletter for members of The Erythromelalgia Association FootSteps online:
-- Mayo pain relief gel now creamy: https://erythromelalgia.org/wp-content/uploads/2017/09/TEA_Footsteps_Jun2014_FNL_web-3.pdf

Current pain management strategies for patients with erythromelalgia: a critical review:
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6121769/

Have you tried any topicals or found anything that provides some relief for you?

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Replies to "Hello @revisl, Welcome to Mayo Clinic Connect. I don't have any experience with Erythromelalgia but I..."

Hi @johnbishop, I have nightly bouts of very hot, dry and burning/tingling feet and ankles, aggravated when my feet are in a wam environment (e.g. under the covers with a mattress heater on). Also, I've been EMG/NCS diagnosed with axonal motor sensory nephropathy. At first I suspected erythromelalgia, but my neurologist (and many other patients on Facebook PN groups) indicate that these symptoms can also be the result of small fiber peripheral nephropathy itself. Has that been your experience?