Anyone out there with Erythromelalgia?

Posted by txbren @txbren, Aug 27, 2018

Are there any patients with erythromelalgia? Have you been successfully treated at Mayo?

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mistert250 | @mistert250 | Feb 25, 2025

In reply to @johnbishop "Hi @hotfooted, I'm not sure if it's an option for you but Mayo Clinic Rochester has..." + (show)

Hello John,
Do you know if the EM Clinic in Rochester is willing to take telehealth patients?
Many thanks,
Tom

John, Volunteer Mentor | @johnbishop | Feb 25, 2025

In reply to @mistert250 "Hello John, Do you know if the EM Clinic in Rochester is willing to take telehealth..." + (show)

Hi Tom @mistert250, I'm not sure if they take telehealth patients but it would be worth giving them a call and asking. Here's more information on the EM Clinic - https://www.mayoclinic.org/departments-centers/erythromelalgia-clinic-in-minnesota/overview/ovc-20421220

Have you been diagnosed with EM?

mistert250 | @mistert250 | Feb 27, 2025

In reply to @johnbishop "Hi Tom @mistert250, I'm not sure if they take telehealth patients but it would be worth..." + (show)

I have no diagnosis. No doctor in the Dallas, Texas area knows anything about erythromelalgia nor do they offer any treatment.

lewin | @lewin | Mar 11, 2025

In reply to @emfm4me "In response to the OP, I was diagnosed with Erythromelalgia (EM) one year ago at Mayo..." + (show)

I have SFN and burning feet and legs. I have erythmyealgia. If you look at Matk Davvis's page ay Mayo, they have connected it with faulty gene. They have also connected it with blood diisorders. It's all very scary and most doctors don't understand it.

lewin | @lewin | Mar 11, 2025

In reply to @becsbuddy "@nancyc777 Welcome to MayoClinic Connect! I’m glad you’re here. You’ve certainly tried everything and documented it..." + (show)

mayo in minesota has clinic. It is thought to be result of gene abnormality. Look at video by Dr. Mark Davis.

emfm4me | @emfm4me | Mar 11, 2025

In reply to @lewin "I have SFN and burning feet and legs. I have erythmyealgia. If you look at Matk..." + (show)

I had the gene testing done to see if I had the mutation on SCN9a, the gene associated with Erythromelalgia, but I was negative. The doctor thinks I had a genetic mutation, but unclear on what gene. Unfortunately this disorder is not well understood. The only medication I take for it is Mexilitine, which acts on the sodium channels associated with EM. I still have flares sometimes and need to exercise caution, but life is more normal. Hopefully, you find something that improves the quality of your life.

januaryjane | @januaryjane | Mar 12, 2025

In reply to @hertz4425 "As a person freshly diagnosed (correctly) with erythromelalgia, I was wondering if the brave souls here..." + (show)

Hi, sorry you deal with this. I have possible Erythromelalgia and have suffered many flares for years. My triggers are sugar, sodium, caffeine, stress, heat, sun, humidity and being sick. I usually can't wear sneakers if its too warm out. If you are a runner you could try buying breathable shoes, going sockless, or putting shoes/socks in fridge..but that would only last so long. Elevation, drinking cool drinks, personal fans, cool showers, diet seem to help most. I sometimes sleep with a ice pack under my neck at night to get cooled down, don't know why but it helps when lying down. Personally use a window Ac unit in my bedroom, game changer! I never use icebaths as this can cause tissue damage. I take gabapentin for my PN which I think slightly helps but have not tried anything else. Aspirin or ibprofen can be helpful but have to be careful of long term use and the stomach. That's what happened to me anyway, chronic gastritis, so no more Nsaids.