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.
Since content and usernames are searchable on this site, you may protect your anonymity by creating a unique username.
To change username, click here.
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.
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. Last week I was traveling about Scotland for work then had my neurology tests including an overnight stay, a hellish lumbar puncture and a flight home to my island in a wheelchair.So pethaps it's not surprising that ever since I seem to have…Continue
I am excited. I have had Google alert for Erythromelqlgia for many months and this is the first time it has brought up a new research paperErythromelalgia Mutation Q875E Stabilizes The Activated State Of Sodium Channel Nav 1.7Conclusion: The…Continue
I have to tell you all that are still able to work, live your daily lives and live through this, you have my deepest respect. My EM is nowhere near as bad as some of yours (Alina, mads.) but it's bad enough that its def put a halt on my normal daily…Continue
During the summer, I struggled with my red feet and also achy legs. Now, in Buffalo, the heat is not quite an issue for me (it was 12 below this morning - ugh!) I am not getting the redness very often, but any time I lay down for more than a half…Continue
I'm 18 and I've been diagnosed with EM for over a year now, and have had symptoms for about 5 years now. I have tried many things...aspirin and topical cream from Mayo Clinic both have been not useful. I'm starting to try lidocaine patches and…Continue
Thank you all for the welcome. I suffered for about 5 years with the only diagnosis being athlete's foot. Nothing helped and of course all the treatments made my feet worse. I started using using Trental..and Clobetasol cream last year when I was…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.
Posted by Laurent85 on January 27, 2015
Posted by NotRed on January 25, 2015
Posted by mads on January 29, 2015
Posted by Tarsius on January 30, 2015
Posted by NotSuffering on January 29, 2015