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Anyone out there with Erythromelalgia?

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

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@revisl

I am new to disease and pretty desperate. I understand there is no cure - only management, and saw a video by dr. Davis who mentioned topical treatment - I am in the Houston area and it is pretty desolate here, despite our large medical center. I am not a good candidate for the Gabanpentins and Lyricas of the world but probably could tolerate them in topical form. Can anybody suggest anything ?

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Replies to "I am new to disease and pretty desperate. I understand there is no cure - only..."

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?

Hi, I have found that taking an aspirin, once or twice a day, and using an over-the-counter cream called Topricin, which I purchase at Walgreens, helps me. When my feet are really burning, I put them on an ice pack for a minute or two at a time, alternating off and on pack so as not to get too uncomfortably cold. I also have used the oil, Frankincense & Myrrh.

Revis-
Thanks for the posting.
The 2 ideas below help some sufferers:
Transcutaneous electrical nerve stimulation
Transcutaneous electrical nerve stimulation is the use of electric current produced by a device to stimulate the nerves for therapeutic purposes. TENS, by definition, covers the complete range of transcutaneously applied currents used for nerve excitation although the term is often used with a more restrictive intent, namely to describe the kind of pulses produced by portable stimulators used to reduce pain.
Capsaicin works by decreasing a certain natural substance in your body (substance P) that helps pass pain signals to the brain. How to use Capsaicin Cream- Use this medication on the skin only.
I also found that extract from lions mane mushrooms decreased my pain and tingling in my left leg. I took the nutrient for 90 days and also lost Reyes Syndrome of cold hands and feet as a bonus. It works for me
Best wishes on your journey.
Dave