← Return to Anyone out there with Erythromelalgia?

Discussion

Anyone out there with Erythromelalgia?

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

Comment receiving replies
@crazyface5000

I have secondary EM and idiopathic peripheral neuropathy. I have found several things that improved my EM and nerve pain. Many people do not believe or understand what it is like living with EM, and therefore think the suffering is only in the mind. I am not here to argue the reason why these things seem to have helped or make recommendations, only to share information that you can take or leave.

In no particular order:

1) Removed all root canals and metal fillings. Marked reduction in numbness after healing from dental surgery.
2) Warm (not hot) baths and keeping my foot temp as stable as possible with warm socks. Yes, it hurts at first, but soaking full body from the neck down helps reduce flares tremendously.
3) Avoiding vasodilators like epsom salt, certain meds, magnesium supplements, and for the most part chocolate. Important for managing recurrent flares.
4) Threw away my foam mattress and any cushions made of foam. Wool is expensive, but works wonders for temperature regulation.
5) Turned off the wifi to any and all electrical devices. Yes, it was annoying to switch everything to LAN cable, but it helped a great deal after an adjustment period.
6) Rarely wear shoes with foam inserts. Again the foam is terrible for temp regulation. Makes my feet start to burn within a short time of putting them on.
7) Spend time outside away from electrical devices whenever possible. This last one has taken me the longest to heal to a point to be able to do it. I was not able to do this while having huge EM flares.

Best of luck to my fellow EM survivors!

Jump to this post


Replies to "I have secondary EM and idiopathic peripheral neuropathy. I have found several things that improved my..."

Hello @crazyface5000, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Thank you for sharing what helps you with your Erythromelalgia (EM). You've obviously been working on your list a long time.

Are you able to share any research tips for how you found the information that led to what has helped you?

I also have Erythromelagia., so far , I have nothing that controls it. I agree with some of your recommendations such as warm not hot showers or baths, but don’t understand some of the other points you have made. How does being around electrical devices or internet cause a flare?