Welcome Members!

Welcome to Living with Erythromelalgia Patient Support Community!

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.

This is an online support group for patients, friends and families affected by Erythromelalgia. 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

  • 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 […]

  • Lipoprotein A
    by shannons on October 21, 2023

    Has anyone ever heard anything about elevated lipoprotein A? Read something that elevated lipoprotein A helps contribute to EM. My son has Em really bad. He has never been tested for this but I do know that I have elevated lipoprotein A. I know that you can take an injection called repatha to […]

  • EM symptoms but only in winter?
    by Lorina on October 18, 2023

    Hello! My partner is experiencing severe EM symptoms that came on this winter and last winter but disappeared almost completely in the summer for 6 months. This has been the trend for about 3 years, getting worse each year. We hear that it is unusual to have worse symptoms during cold months and […]

  • Ketamine Infusion
    by emhelp on October 11, 2023

    My doctor and I had a video appointment today. I am on 65 mg Amitriptyline at bedtime and 175 mg pregabalin twice daily. I am improved when compared to 5 years ago. My doctor surfaced Ketamine infusion as a possible third treatment. Has anybody tried this? 3 posts – 3 participants […]

  • 📢 Calling mothers of children with rare diseases of all ages
    by ModSupport on August 12, 2023

    Ben’s Friends has launched a new community for moms raising children with rare diseases and chronic conditions and we are inviting you to join Warrior Moms Living with Rare Disease Warrior Moms Living with Rare Disease Warrior Moms fighting rare diseases […]

  • Welcome Heidi!
    by ModSupport on June 21, 2023

    Hi Heidi (@EMinCalifornia )! I wanted to give you a formal welcome, as well as an opportunity to have your own thread while you’re still getting comfortable with the site. I saw that you mentioned your concern about wildfires in California. I’m in NY, and at no risk of evacuation, but the […]

  • Mirtazapine for EM?
    by hopingforhealth on May 19, 2023

    Hello, I hope that you are as well as possible. Has anyone found mirtazapine to be helpful for EM sysmptoms? Duloxetine minimized EM symptoms but the side effects were terrible to me. Nortriptyline did not help EM symptoms at all. Thank you. 4 posts – 2 participants Read […]

  • 7 Things to Look for When Choosing a Doctor
    by BF_Writer on May 18, 2023

    Sascha Gallardo – November 1, 2022 When you are experiencing symptoms and know that something is wrong, do you settle with the first doctor you meet? Like many other patients, do you also think that doctors know everything so you should believe and simply follow everything they say? At Ben’s […]

  • Amitriptyline, Lyrica(?)
    by emhelp on May 14, 2023

    I have been going through a handful of drugs. I also am seeing a doctor who is a vascular surgeon (recommended on this site). So Gabapentin is a drug that I think helps (am taking 2800 mg per day). But I cannot say “boy I wish I was home to take some Gabapentin.” The next drug I tried was […]

  • For everybody who has nerve pain and dont know why
    by Andy on May 12, 2023

    hi, if any of u have pain in ur feet like i do and have no idea why or what to do about it i want to make a suggestion that u go have an MRI done on ur spine. weather it be the whole thing or in my case i threw my lower back out when i was younger many times from lifting things i shouldn’t have. […]