Anyone out there with Erythromelalgia?

I understand completely. I’m not saying there aren’t any info or sources that validate my list of choices. There very well may be. I’m only saying I haven’t looked for them to be able to provide. Thank you for sharing the website.

Most of the major websites I’ve looked at for answers about EM were not very helpful for me personally. I’ve tried a number of their recommendations that made little to no difference. The list of things I wrote are the only things that have made a noticeable difference for me personally.

I have gone from almost being wheelchair bound to now being able to garden outside in the summer heat. I understand EM is very personal and what works for one, will not work for another. Folks can take what they want and leave the rest.

Hello- I’m new hear. I had EM for 2 years and it has now been dormant for 8 years. Hopefully forever! I received the J&J vaccine after much debate as I don’t want anything to bring the EM back. Anyway, it’s time for a booster and by the looks of it J&J is not a very effective vaccine. I’d like to get Pfizer but am nervous as I’ve recently read about some cases of acute EM (it went away) after getting moderna and Pfizer. Again, I want to be protected but don’t want to risk the EM returning. Coming here for real world experiences with the vaccines and EM. Thanks!

I am as curious if anyone has been diagnosed with Erythromelalgia. What treatments may have worked for them, I am currently on gabapentin and Effexor and it helps, but still having flares, happy I found this group!

Hello @jeichmann21, Welcome to Connect. It is really good news to hear that your EM went into remission and it has been over 8 years. Until we hear from other members with Erythromelalgia who can share their experience with you, I found some information that may be helpful.

"Reports indicate that nearly 10% of patients may achieve spontaneous remission of their symptoms, never to be affected again. The principles of treatment in erythromelalgia are aimed at correcting the underlying cause." -- Erythromelalgia - American Osteopathic College of Dermatology: https://www.aocd.org/page/Erythromelalgia

Current pain management strategies for patients with erythromelalgia: a critical review: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6121769/

Are you able to share any information on your treatments before EM went into remission?

Hi @recthrpy, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about erythromelalgia. I did this so you can more easily connect with fellow members like @crazyface5000 @jeichmann21 @dipperlip1 @capsaicin and others. I encourage you to read through the past posts.

How long have you had erythromelalgia? How long have you been on gabapentin and Effexor? What do you do to soothe the pain during a flare?

I have a history of mild PN but also recently diagnosed with EM in my feet (burning and redness). I am taking 2400 mg of Gabapentin and 30 mg of duloxotine (Cymbalta) every night and it has helped a lot with burning feet at night. I can sleep without having to get up and put on "cold socks" every couple of hours.

Pkagarwal, did you see @crazyface5000 post here: https://connect.mayoclinic.org/comment/634046/

Your tip of cold socks could be added to the list. Are these special socks or do you have socks that you keep refrigerated?

I buy these socks from Natracure (also avaialble on Amazon). They have two gel packs in it to keep your feet cool. I keep them in the freezer.

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?

I just got those socks too! Helps to quickly cool my feet.