I have EM symptoms and get flared in hands and feet. Any environmental temp above 72-73 I feel bad all over with general ill feeling and headaches. I’m cold when I should be warm and hot when others are comfortable.
I use essential oils mentioned in these posts and use an anxiety drug when in a big flare. By primary doctor recognizes EM and willing to try things. Gabapentin and antidepressants didn’t work and had side effects.
Just trying to live a life
I am guessing the anesthesiologist might suggest lidocaine infusion. They have published a few papers on the use of lidocaine in extreme cases where people can't function at all without their feet and sometimes entire body feeling like it is on fire all the time. However, it did work for those I read about.
Thank you all for your input.
P.S. I do find that every evening I soak my feet in warm water for 20 minutes. They get very red while doing it, but once out of the water I moisturize them and settle in my recliner to watch some t.v. Since I cannot tolerate a closed shoe or sneaker, I live in sandals year round and my feet take a beating. I live in NJ. Winters get cold, but my feet LOVE it. It is my happiest and most functional time of the year!!! My dog loves it too because he gets daily 3 mile walks in winter. Can't say the same for warmer weather. Oh, and get this one - One doctor I visited suggested I just move to Alaska!! I couldn't believe he said that.
Thanks to everyone for their input!!
I too soak daily with warm water about 100 degrees. Seems counterintuitive but I think helps desensitize to the heat of a flare. Also feels good and is relaxing making me think I’m doing something positive without drugs.
I too soak daily with warm water about 100 degrees. Seems counterintuitive but I think helps desensitize to the heat of a flare. Also feels good and is relaxing making me think I’m doing something positive without drugs.
The warm water softens my feet and heels if nothing else. I cannot wear closed shoes. As a result, my heels are prone to drying out and cracking. The warm water keeps them soft. I do the soak and apply the lotion in the evening before going to bed.
I too soak daily with warm water about 100 degrees. Seems counterintuitive but I think helps desensitize to the heat of a flare. Also feels good and is relaxing making me think I’m doing something positive without drugs.
@chme The best way to find out if there is a clinic is to do a little research. Scroll down this page to the blue section and click on Mayo Clinic and then check out the different areas. Can you do some research this weekend? Let us know what you learn!
@chme The best way to find out if there is a clinic is to do a little research. Scroll down this page to the blue section and click on Mayo Clinic and then check out the different areas. Can you do some research this weekend? Let us know what you learn!
Hello and Happy New Year to you all. I am new to this group, and am considering making an appointment at the Erythromelalgia clinic in Minnesota, even though I live in San Francisco. It might be worth the travel expense to get the thorough testing and diagnostics for my EM, which I've had for nearly 4 years. Have any of you gone to this clinic, and if you have, what was your experience like? Was it beneficial? Thanks in advance!
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I have EM symptoms and get flared in hands and feet. Any environmental temp above 72-73 I feel bad all over with general ill feeling and headaches. I’m cold when I should be warm and hot when others are comfortable.
I use essential oils mentioned in these posts and use an anxiety drug when in a big flare. By primary doctor recognizes EM and willing to try things. Gabapentin and antidepressants didn’t work and had side effects.
Just trying to live a life
Emphasize with all who suffer this
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1 ReactionI too soak daily with warm water about 100 degrees. Seems counterintuitive but I think helps desensitize to the heat of a flare. Also feels good and is relaxing making me think I’m doing something positive without drugs.
The warm water softens my feet and heels if nothing else. I cannot wear closed shoes. As a result, my heels are prone to drying out and cracking. The warm water keeps them soft. I do the soak and apply the lotion in the evening before going to bed.
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1 ReactionThanks. We all try things and these postings help us know what others are trying!
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1 ReactionI heard Mayo has an Erythromelalgia clinic. Perhaps it could help answer many of our EM questions.
@chme The best way to find out if there is a clinic is to do a little research. Scroll down this page to the blue section and click on Mayo Clinic and then check out the different areas. Can you do some research this weekend? Let us know what you learn!
@becsbuddy and @chme, There is an Erythromelalgia clinic in Minnesota. Here's the page where you can learn more and make an appointment.
--- Erythromelalgia Clinic in Minnesota: https://www.mayoclinic.org/departments-centers/erythromelalgia-clinic-in-minnesota/overview/ovc-20421220
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1 ReactionThank you.
@johnbishop knows everything!! And is a computer whiz! Thanks, John!
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2 ReactionsHello and Happy New Year to you all. I am new to this group, and am considering making an appointment at the Erythromelalgia clinic in Minnesota, even though I live in San Francisco. It might be worth the travel expense to get the thorough testing and diagnostics for my EM, which I've had for nearly 4 years. Have any of you gone to this clinic, and if you have, what was your experience like? Was it beneficial? Thanks in advance!