Welcome! You're not alone.
If your family has been affected by Erythromelalgia, consider Living With Erythromelalgia your second home.
Got some QUESTIONS?
Check our FAQ PAGE.
Read More from our First-Time-User Guide.
We are patients living with erythromelalgia, here for your support.
All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.
Just the Stats:
Welcome New Members and Greetings from Ben's Friends!
BensFriends.org is proud to partner with a number of organizations to help our members in various areas, including legal, financial, research and medical.
Know more about our PARTNERS, visit this link.
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.
Hi everyonePerhaps I am wrong, but I got the impression that many of us haven't had EM for very long?(<5 years?)So I was wondering how long people have had this for and perhaps if something else came along (eg: MPN) then how long did you have EM…Continue
Started by Fixme in Recommend a Doctor, Therapist, or Clinic (Positive Review Only). Last reply by dkel9307 Jul 26. 23 Replies 5 Likes
A must read for EM patients from the Mayo Clinic. A recent study showed that a predominantly small-fiber neuropathy underlies most cases of erythromelalgia. Link below. …Continue
Burning foot for six months. Tried everything. Only soaking foot in cool water and epson salt helped temporarily, three times a day...Was diagnosed with Erythromelagia at the VA...Was told it is a condition I have to live with! So I bought another…Continue
Hello, For 3 years now my son has suffered with pain in his legs the nights were the worst if he did anything during the day (running,playing etc) I had to give him tylenol before bed just so that in the middle of the night he'd only wake up crying…Continue
Hi GuysJust to let you know that i am feeling much better and back. Massive thank you to ((((((everyone)))))))))) who sent their well wishes over the past 3 weeks.We will be posting the ' spotlight on ' feature mid August. This 2nd spotlight will…Continue
Hi EveryoneI trust you are as well as can be.For an unknown reason, I have been having long,non-epileptic seizures (20-60 minutes), followed by paralysis (1-2 hours).These are not suspected to be art of EM.My reason for posting is that I have been…Continue
Keep in touch with friends. Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now!
Learn how others cope and be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.