In response to the OP, I was diagnosed with Erythromelalgia (EM) one year ago at Mayo Clinic - Jacksonville. It was a relief because my Rheumatologist in Chicago had misdiagnosed me. Since then, I relocated to Jacksonville area and continue to follow up with my Rheumatologist at Mayo. I’ve also been diagnosed with Fibromyalgia (FM) and Ocular Migraines subsequently. The past year has been full of emotions and chronic pain. EM and FM have been tough, especially trying to figure out personal triggers, and losing the ability to have the very active/athletic life I once had. My kids are still young, so I miss running around with them. Sometimes the flares are so bad I’m unable to walk properly. Currently I take aspirin, gabapentin, and CBD oil. They all help slightly, but I’m still searching for a better medicine. To anyone newly diagnosed: You are not alone. I wish for you a clearer path to health.
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.
@nancyc777 Welcome to MayoClinic Connect! I’m glad you’re here. You’ve certainly tried everything and documented it well. Are your doctors at a comprehensive medical center or university hospital? The reason I ask, is because I don’t feel that you are getting adequate care. Maybe you are, but it seems like nothing is working for you.
Would your doctors be open to referring you to Mayo Clinic, Jacksonville? Would you be open to going to Jacksonville? Here is the link: https://mayoclinic.in/1mtmR63
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.
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.
As a person freshly diagnosed (correctly) with erythromelalgia, I was wondering if the brave souls here could let me know the origin / advancement of their condition. I had a fungal infection on my feet which took a few months to treat, and my doctor suspects the creams and the stress triggered a flare. (I realized I had at least one previously, years earlier, but didn't know what it was.)
With the condition seemingly managed for now, I have no idea if it is safe to re-start my active life. I was/am a runner, with my last marathon in October of 2024... the 7th marathon of that year.
Would a trip to Mayo be worth it to discuss? I have completely eliminated caffeine, alcohol, and my beloved spicy foods and am feeling better. Using only a sheet to sleep, and I'm researching meditation. I'm amping up hydration and working on the last, hardest elimination yet... sugar.
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.
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Hello John,
Do you know if the EM Clinic in Rochester is willing to take telehealth patients?
Many thanks,
Tom
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1 ReactionHi 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?
I have no diagnosis. No doctor in the Dallas, Texas area knows anything about erythromelalgia nor do they offer any treatment.
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1 ReactionI 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.
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1 Reactionmayo in minesota has clinic. It is thought to be result of gene abnormality. Look at video by Dr. Mark Davis.
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1 ReactionI 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.
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Helpful -
Hug
2 ReactionsHi, 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.