Living with Erythromelalgia is an online patient support community that is powered by BensFriends.org, a network of patient support communities for rare diseases. Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
Erythromelalgia (EM) is a rare neurovascular pain disorder that can cause redness and pain in all parts of the body, but most frequently the extremities, such as the hands and feet. It is characterized by intense burning pain, severe redness (erythema), and increased skin temperature that may be episodic or almost continuous in nature. The specific underlying cause of EM remains unknown.
Erythromelalgia may occur either as a primary or secondary disorder (i.e. a disorder in and of itself or a symptom of another condition). Secondary erythromelalgia can result from small fiber peripheral neuropathy of any cause, essential thrombocytosis (erythromelalgia can also develop in the presence of normal platelet counts in patients with myeloproliferative disorder), hypercholesterolemia, mushroom or mercury poisoning, and some autoimmune disorders. Primary erythromelalgia is caused by mutation of the voltage-gated sodium channel α-subunit gene SCN9A.
LivingWithErythromelalgia.org is a virtual peer-to-peer community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.
How is Ben’s Friends Different from Social Media and Other Support Sites?
Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
We’re interested in you as a person, and in your struggles as a rare disease patient. But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe. Your information is never shared, and your activity never tracked by adware.
When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live. That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together..
Ben’s Friends: Safe and Supportive.
And anonymous to keep it that way.
Why create an account?
Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:
Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.
Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.
Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.
Click here to create an account and join.
Latest Discussions
- New member questionsby JaneS55 on May 23, 2026 at 7:27 pm
Hi I’m new here and my name is Jane. I always wake up in the middle of the night with different types of pain including pins and needles. Sometimes burning hot or freezing as if I was walking through snow barefoot. I have been suffering with severe pain several times a month. Then it went to never stopping. I’ve been given different lotions like lidocaine and lidocaine patches as well. Also tried a pill that is commonly used Gabapentin but I couldn’t tolerate it and it didn’t work for me. So they tried Lyrica and it seemed to help at least a little bit which was better than nothing. They started me at a low dose and I didn’t feel much relief so they increased the dose and my husband said I started dropping things and fidgeting and so the doctor said we’d have to cut back again because we didn’t want those symptoms and I’ve been on that dose for as long as I’ve known what I had which is maybe a year. I’ve know I’ve had it a lot longer time but I thought it was something else I was positive and of course I can’t think of the word. There are many doctors for that type of thing. I called that doctor and told him my symptoms and he said it sounded right. So he made an appointment for me. When I went in and showed him my feet and described all the different feelings. He decided he would put me through a course of tests and when I was done with all the testing it came back that I didn’t have that type of thing. He I’m had me come back in and gave me 5 pages on Erythromelalgia. Even though I still can’t pronounce the word, I quickly started reading every word on every page, some of which I could not pronounce either, but everything in that report matched every symptom I had. The sad part was that it was so rare. There were no doctors to speak of and very few people that had it. I felt so alone and the pain got worse and worse and worse. I was so depressed. Seems like I’ve had so many things that are rare, but then my psychologist sent me Three Links to check out. This being the first and the second was to find other people that had it and hopefully I could get some answers from reading what they wrote. So I’m just starting this today. I hope I do everything right. I hope some of this helps you or someone, and I’ll continue to read everyone’s information on here. Hoping I can find an answer to find a doctor that really knows about this. Thank you for listening Jane S Rockford IL 3 posts – 3 participants Read full topic
- First time Em Any one on here has had their nails grow backby Ale1033 on May 16, 2026 at 1:01 am
Noticed my nails don’t really grow anymore. I’m new here my EM started a month ago Started on my hands, I was a bartender (had to quit) my hands would first get really itchy and swell pretty bad (I worked the weekend so 3 days back to back) by the third day my hands would be so hot and they would burn for three days and then once the trigger stopped, they would deflate and kinda shock then be okay. This happened for three weeks back to back. At the time my car also had no AC which is what I believe triggered everything. Also constantly holding cold things for 9 hrs I think caused a trigger flare. At the time I thought it was eczema so I was also adding a lot of creams and the creams made me flare up pretty bad. Until the day I noticed so I stopped using the creams. I quit. It’s been two weeks, the last day I worked I think the stress triggered the EM to travel to my feet. Now I experience blood pooling and I can’t really wear socks or shoes walking is hard. The outside heat really triggers my hands and feet but I don’t really flare for hours or days. My extremities just get hot and a little itchy and once I’m in ac it cools down. I take warm showers but I have a chair that I sit on and elevate my feet. Water really dries out my hands but I can sleep under covers with slight slight discomfort. Really really thinking about doing bobs protocal but I want to speak with my derm first (appointment in a week) Also have a question has anyone’s toes nails kept growing definitely concern for me. Also feet don’t flare at night for me Did anyone else start this way 1 post – 1 participant Read full topic
- New Member Introductionsby Tony on March 23, 2026 at 9:02 pm
Hello. I’m Tony. I live in Kansas City. I’m in my early 60s and I’ve had this condition for 15 years but only recently found out it was called Erythromelalgia. As I’m sure you know, it’s rare so most people and doctors have never heard of it. Until recently, I thought I was the only person in the world with this condition. After researching EM, I realize that my case, even though a huge problem for me, is minor compared to many other people I saw or read about online. For some people it looks much worse than what I’m experiencing and my heart really goes out to those folks. My symptoms are the burning feet and associated problems. A near daily occurrence. Worse in the evening and worse in the heat. I try not to wear shoes and never wear socks. Being on my feet aggravates the problem. My GP has prescribed Cymbalta + Lyrica. It almost immediately started working. I’ve only been on it about a month now, but I’ve already achieved a level of comfort I’ve not had in years. I’ve also found aspirin helps for relief sometimes but takes a long time to take effect – an hour or more. I’ve also occasionally taken a muscle relaxer off label at bedtime to relieve pain if it’s intolerable – it does help. I’m very happy to have found this online community and am glad to answer questions as best I can. 2 posts – 2 participants Read full topic
- I read somewhere that you can use warm water to adjust your temperature in your feet, is that true?by Michele on March 23, 2026 at 4:39 pm
I read somewhere that you can use warm water to adjust your temperature in your feet, does it help? 5 posts – 3 participants Read full topic
- Life line for foot pain and swellingby pilgrim55 on March 20, 2026 at 10:34 pm
1 post – 1 participant Read full topic
