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Anyone out there with Erythromelalgia?

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

My hands sting and burn in heat, but my feet are th worse. I have been diagnosed since April 2018 with Erythromelalgia, and also Peripheral Neuropathy. I am taking Gabapentin and CBD oil, but nothing but “cold” helps!

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Replies to "My hands sting and burn in heat, but my feet are th worse. I have been..."
jcmoffatt | @jcmoffatt | Sep 11, 2018

Yes, my feet are the worst. I’m actually on the same meds as you! I’ve been advocating for myself since middle of June. It’s exhausting physically and mentally.

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drolker | @drolker | Feb 16, 2021

I know. I stand in the bathtub in cold water for a few minutes. Only thing that helps .

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debschults | @debschults | Jul 8, 2022

I had bad side effect from gabapentin. CBC oil is helpful. I also take a proprietary blend of B vitamins and Alpha Lipoic Acid. I sleep with a fan blowing on my feet, and have one under my desk too! Going outside on hot days is so painful, sometimes the only relief is to soak in cold water for a few minutes.

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