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Anyone out there with Erythromelalgia?

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

Hello @wiedd, Welcome to Connect. I know it has to be frustrating when you are trying to get answers after seeing many doctors and specialists. Since you mentioned you also have Reynaud's there is another discussion you might find helpful -- Raynaud's Syndrome: https://connect.mayoclinic.org/discussion/raynauds-syndrome/

Have you found any treatment that helps you?

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Replies to "Hello @wiedd, Welcome to Connect. I know it has to be frustrating when you are trying..."
wiedd | @wiedd | May 27, 2022

Thank you for the link to the site. In brief, I have not really found anything like a “silver bullet” that is effective. With both EM and Reynauds it is tough because treating one condition (overdilation) exacerbates the other (overconstriction). And I can’t use pain killers.
My “recovery” period seems to be overnight, so if I can get sleep then there is a bit of relief by the morning. This I can attain with the help of Medical Cannabis. I recognize thatthis is not an option for everyone, but does help my insomnia, which seems to be another Hallmark of this disease. I have also found that any supplementation that proclaims to help with blood circulation (even fish oils, magnesium etc) makes the flares worse.

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