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
- NEED DR. Referral in AZ PLZ THX U!by rh2026 on September 30, 2026 at 7:13 pm
Hi, Im in Phoenix Az , would somebody plz recommend a doctor? I have a doctors appointment in an hour and I need a referral please, thank you! I’m not sure if I’m posting where I’m supposed to be posting? This is the first day I have been able to find where you can post! Would someone plz send me a link re’ posting? I can’t find any info on it only here. 1 post – 1 participant Read full topic
- Any new information available?by Tooyoungforthis on September 29, 2026 at 5:08 am
Hi, new here. I noticed many conversations and information is from several years ago – not too much has been posted recently as far as I can find. Is this the right group, or has another one been made for those of us dealing with Erythromelalgia? Thanks!! 4 posts – 3 participants Read full topic
- New here – any suggestions for facial flushing / dry and cracked skin on handby QuietKiwi on August 7, 2026 at 7:38 am
Hello, I hail from New Zealand and am slowly reading through the posts in this forum. I am not sure where to start with my story! Prior to Covid-lockdowns, I suffered with an ingrown toenail which meant that I usually only wore jandels. I think my feet got warm in those days. When I finally got help from a podiatrist, I got a severe rash on my feet and legs (and a bit on my hands). I was also diagnosed with ME/CFS and had to resign from my job the previous year. Now I have a big red patch on my left foot that a rheumatologist said wasn’t like that when I went to him earlier. It has been about 6 years that I have really struggled with severe facial flushing. Every place I went to seemed very hot to me and my face would go bright red. My GP ran out of ideas to help so she referred me back to the rheumatologist who suggested Erythromelalgia as my feet (alternates between burning and stone cold – sometimes both but not always), right hand (which is nearly always looking red and puffy with cracked/dry skin), and my face/ears. I have tried several different things which haven’t worked. When it gets bad, I get really emotional and wonder what the point of life is as I can’t go out anywhere, have to stay cold (in cold environment), or do much, particularly outside in the sun. I wondered what others would suggest? Louise 3 posts – 2 participants Read full topic
- Trying to try out Mexilitineby Hopeinthislife on July 30, 2026 at 1:08 am
Hey everyone! I’m trying to find a doctor willing to help me treat my Erythromelalgia! I want to try out mexilitine but having a hard time finding a doctor willing to let me try it out. I’m in the Dallas/Fort Worth area in Texas and was wondering if anyone is in the area and knows of a doctor that treats this condition! Thanks in advance:) 2 posts – 2 participants Read full topic
- Dilitiazem for high blood pressure affect on erythromelagiaby dara49 on July 15, 2026 at 8:19 pm
Were you told that you don’t have erythromylagia if you don’t have small fiber neuropathy? 3 posts – 3 participants Read full topic
