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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.

Blog Posts

Diagnosis Day

Posted by Willemijn on January 30, 2015 at 4:22pm 0 Comments

Dear LWE-friends, 
You've been on my mind even though I wasn't able to write here for a while.
Much happened since the last time I was here: 
I researched my own diseases. Struggled to get to the right…

ClinicalTrials.gov Studies

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Ben's Friends Fundraiser

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What is Erythromelalgia (EM) ?

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.


Just not coping at all somehow?

Started by NotRed in General. Last reply by mads on Monday. 17 Replies

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

Hot off the press from The Journal of Biological Chemistry:

Started by Nel in General. Last reply by mads Jan 19. 11 Replies

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

For my fellow EM. Warriors...

Started by Laurent85 in General. Last reply by K-ren 55 minutes ago. 9 Replies

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

Achy legs are waking me up. Looking for suggestions

Started by Tired in General. Last reply by dazsa Jan 20. 13 Replies

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

Lidocaine patches

Started by Sara in General. Last reply by Dreamline Jan 22. 6 Replies

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

Newbie thoughts

Started by smhcolo in General. Last reply by MtnGypsyGirl Jan 16. 7 Replies

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

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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.

Latest Activity

K-ren replied to Laurent85's discussion For my fellow EM. Warriors...
"Laurent85 I really appreciate this post right now!! I have been having a terrible couple weeks and…"
55 minutes ago
Tarsius replied to Tarsius's discussion Pill and EM?
"Hi Mads, I see that this can be tricky! I have regular blood pressure; I've been taking this…"
1 hour ago
K-ren updated their profile
1 hour ago
Tostitoes updated their profile
9 hours ago

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