Erythromalalgia Treatment

[Jerrymohler]

Anybody with experience (success?) treating erythromalalgia with nerve block or surgery to cut sympathetic nerves? This frequent, severe aching pain and burning is driving me bonkers. I am so sick and tired of it!

[Lainy1]

I feel your pain, it's just awful.. I actually used my ice cold car door today to ease the burning while my hubby ran into the supermarket. I looked a little, ok a lot silly,but it eased the burning in my hands 😭😭

Hope you get some good reply

[DH65]

Have you looked into LDN low dose naltrexone? Lots of Dr in your area with experience.

[Jerrymohler in reply to DH65]

Are you coming off opiate addiction?

[DH65]

No, not at all. Low dose naltrexone is used for pain, inflammation, cancer, modulates immune system. Has helped me with energy, sleep, pain , inflammation and side effects of H U which I still take. My hematologist has other patients on it .

[Jerrymohler]

omg...I read that it's primarily prescribed for alcohol and opiate addiction. Very glad to hear you're doing so well on it for all the other indications. Thanks for the reply...and Merry Chrismas!

[Indigo42916]

This is my main symptom of ET along with leg pain, maddening. Elevating feet is the only thing that helps. I want to learn more about the nerve block.

Any info. would be helpful. Merry Christmas to all.

[JuliaJa]

I don't know how I became a member here, I've been getting messages everyday for awhile. I'm in the support group for AFib and Erythromelilgia. Anyhow, when I saw the question regarding Erythromelilgia, I thought I'd answer.

Some people are having relief from EM pain with CBD Oil. It's marijuana without the high. There is a support group on Facebook called CBDOilUsers.com it has education and a list of reputable brands. If you're interested, you can check it out.

I take Desipramine (Norpramin), for pain, 30mg, a low dose and it helps my pain. Plus, I get Lidocaine 10% compounded cream for feet. Also, ALA helps some people ....alpha lipoid acid. I use a clay wrap I keep in the freezer if my feet are burning, got it at Walgreens.

The Erythromelilgia group here isn't very active. Are you aware of the TEA The EM Association.

Maybe you already know all this, but just wanted to help.