Finding support for Erythromelalgia? Connect with people like you.

A welcome banner for Living With Erythromelalgia community featuring a group of hands symbolizing unity

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.

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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

  • Introduction and location
    by DerekL on May 20, 2024

    Hi all I live in New Zealand and am currently working in Istanbul (which can get hot!) I picked up a burning feet issue about 6 months ago and the docs at home all think its a fungal disease. Yet No anti-fungal treatment is helping! It’s a major problem for me as I can’t wear socks n shoes but […]

  • Erythromelalgia and Scleroderma any connection?
    by pilgrim55 on April 23, 2024

    Have been told by several Doctors at the VA that I have erythromelalgia and some have said scleroderma. I looked up both and find there seems to be a connection one to the other. Has anyone heard of this connection? Thank you… 5 posts – 3 participants Read full topic

  • New member – hi 👋
    by ASC on March 1, 2024

    Hi everyone I’m new to the forum and came across it by chance which I’m really grateful for as I’m struggling at the moment. I was diagnosed with EM in May 2023 at age 36, along with Raynaud’s. It started in my hands and feet but has since spread to my knees, nose and ears. I’m currently […]

  • Flare-up that won’t stop
    by lavojm on February 21, 2024

    My symptoms really started to become more and more often and last longer and longer no matter what I tried. Today they are basically continuous. I can soak my feet in cold water and get some relief, but as soon as that come out the inflamation, burning and temperature elevation in my feet returns […]

  • Asking for opinions
    by Lnyland on February 4, 2024

    I want to ask people who have EM if they think I may have it and if so what should I do. I am a heathy 53 year old with hypothyroidism and migraines but both are managed well. In my teens my feet started turning purple whenever I stood still for too long but no pain. In my early 30’s my left foot […]

  • Pain Management Practice
    by emhelp on February 2, 2024

    I went to a Pain Management practice yesterday. I am going to try Spinal Cord Stimulation on top of my Oral Stimulation (Lyrica and Amitriptyline). Does anybody have experience with this? 1 post – 1 participant Read full topic

  • Alternative treatment
    by herdfan on January 14, 2024

    I recently went to chiropractor who has an alternative treatment for neuropathy sufferers. It has given much improvement to many who has diabetic neuropathy or has it due to chemotherapy treatment. I decided to try it to see if it could help my em. I have had em since 2015 and suffered much until […]

  • Looking Your Stories – How has this site benefited you?
    by ModSupport on January 9, 2024

    @trust_level_0 Dear Erythomelalgia Support Member, For over 10 years, the Ben’s Friends online rare patient communities, run & moderated by rare patients themselves, have been a source of support for many of us, living with rare diseases. But it’s not enough. We would like more people to […]

  • To much b6 in my blood work
    by Judith164 on January 7, 2024

    I have a very high level of b6 in my blood I don’t take extra vitamins has anyone esle with em have this thank you 3 posts – 2 participants Read full topic

  • Breakthrough remission with adjustment to Bob’s protocol!
    by Slee on October 23, 2023

    I know that Bob believes his protocol works because the process desensitizes the nerves to better tolerate heat but I’ve always been skeptical about this. However, I never had any doubts that it DOES work after witnessing my own feet improving in resilience, color, and feel after just a short […]