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

  • Become a Champion for Our Rare Disease Community
    by ModSupport on November 19, 2024

    Thank you for being an essential part of our Ben’s Friends community. Today, I want to invite you to take your support a step further by becoming a fundraiser for our “Friends Helping Friends” campaign. What does it mean to be a fundraiser? As a fundraiser, you create your own personal […]

  • Join Us in Strengthening Our Rare Disease Community
    by ModSupport on November 15, 2024

    I hope this message finds you well. As a valued member of our Ben’s Friends community, I’m reaching out to share an important initiative that directly impacts the support we provide to individuals like you who are affected by rare diseases. Today, we’re launching our annual “Friends Helping […]

  • An Opportunity to Strengthen Our Rare Disease Community
    by ModSupport on November 13, 2024

    I hope this message finds you well. As a valued Ben’s Friends community member, I wanted to reach out about an important initiative. In the coming days, we’ll be launching a campaign that gives us all a chance to strengthen and grow our rare disease support networks. This initiative isn’t […]

  • Anyone use Hydroxyzine 25mg for Erythromelalgia on face and ears
    by Krista on October 19, 2024

    I have had systemic JRA since 1975 and now the damage has created osteoarthritis and have had multiple orthopedic The Erythromelalgia really worsened after my cervical spinal infusion I am on many medications for my arthritis and other conditions I tried Oxcarbazepine but had to discontinue it due […]

  • Homeopathy is helping!
    by SilverElm on October 8, 2024

    I was diagnosed with EM this spring, but have been having the symptoms for about 2 years, with it gradually getting worse. It’s in my feet and was becoming VERY painful. I began working with a homeopath a few years ago on some other issues because my body doesn’t tolerate or is allergic to many […]

  • Having kids
    by PhilLer on October 2, 2024

    Dear members My wife is 37 years old and was diagnosticed with erythromelalgia about 20 years ago. Actually we have difficulties to have kid. Do you have erythromelalgia and children? Is there a link between our difficulties of having kid and my wife having erythromelalgia? I thank you very much […]

  • Hi, new here 🙂
    by Lin3 on August 4, 2024

    Hi, I just found this support site after recently being diagnosed. My symptoms started about 4 years ago, and it has been gradually getting worse since. It started in my feet, but now I experience pain and hot redness in my feet, hands, and sometimes it spreads to my legs and face. It has become […]

  • We Need Your Financial Support
    by ModSupport on July 13, 2024

    Dear Erythromelalgia Community, From the beginning of Ben’s Friends Rare Disease Communities, we have desired to provide these sites free of charge to our patients and their families. However, it costs us several thousand dollars a month to keep our 40+ rare communities up and running. Would you […]

  • 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