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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.


Has anyone tried Botox for their feet & toes?

Started by Miss Patti in General. Last reply by sheltielife 2 hours ago. 3 Replies

Hello!My dermatologist, who I work for from home, wants to experiment by injecting Botox in my toes & feet because they have gotten so bad. I'm kind of nervous about trying it in case it makes me worse. I guess it's to deaden the nerves. I don't…Continue

YOUR EM COMMUNITY NEEDS YOU! Dr Database: What is the the name of the Dr/specialist who diagnosed your EM and/or treating you?

Started by mads in Recommend a Doctor, Therapist, or Clinic (Positive Review Only). Last reply by Carine 13 hours ago. 96 Replies

Hi Guys,I know there is a category for recommended Dr/Specialists for Em'ers but frankly it seems lost . We all desperately need to know how to find EM aware /proactive medics . We are, therefore, compiling a comprehensive international list, which…Continue

Does EM usually worsen over time?

Started by Beth L in Symptoms and Their Management. Last reply by Carine 15 hours ago. 7 Replies

Just wondering what others' experience is as I am a newbie to this disease. Thanks, Beth L

Tags: Prognosis, progression, EM


Started by Micky R in Complementary Therapies. Last reply by Bootcamper on Thursday. 5 Replies

Hi guys, I am new to the group I have SFN and Erythromealgia all started over two years ago 'nightmare'  I have seen every doctor you can think of and only until quite recently they thought I was crazy  and stressed as all my bloods and exams are…Continue

Possible symptom question

Started by Tara in General Sep 26. 0 Replies

Hi allI suffer from severe abdominal bloating and hardness only in the evenings from dinner onwards.Have tried tiny meals and it makes no difference.I am wondering if anyone else has this problem?Tara :)Continue

Anyone heard of Low Level Light Treatment for Neuropathy?

Started by Lynee in Complementary Therapies. Last reply by MJT Sep 25. 12 Replies

http://www.chousky.com/Home.html Apparently there are these centers in North America that claim to treat Neuropathy with LLLT, [Low Level Light Treatment] a non invasive, no medication procedure.Anyone…Continue

Son just diagnosed with EM - is this right?

Started by selketine in New Member Introductions. Last reply by watchman Sep 23. 32 Replies

Hello - I'm happy to have found this forum.  My son is 13 years old and was diagnosed with EM yesterday by a pediatric dermatologist.  This is going to be a long post so...forgive me in advance...lol! About 5 months ago he started having episodes…Continue

cream amitriptiline ketamine

Started by Carine in General. Last reply by Carine Sep 23. 4 Replies

Hi everybody;I'm french and EM sufferer for 8 months. It was severe, and quick progressive. I have tested lyrica and gabapentin with a very little effect and many side effects.In the hsospital, they give me tramadol : nothing, and amitryptiline :…Continue

I say my affliction is like EM, doctor says CRPS (RSD) what do you think?

Started by sammy in General. Last reply by erikdc Sep 19. 3 Replies

I have had this affliction for seven months. When lowered, my foot (right only) gets red, blotchy, hot, and painful. When raised to chest level, it quickly goes to normal color, less painful. Vascular test showed normal blood flow. Neurology test…Continue

Does anyone know of any relief for hands. Not Ketamine cream!

Started by Kathleenlynn in General. Last reply by Carine Sep 18. 23 Replies

I have had EM for 12 years in feet and lower legs. I have been homebound for days on end. I am truly a strong person. I now have it in my hands and this is so hard for me to deal with. I just found out I am a Diabetic (started while using…Continue

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Latest Activity

sheltielife replied to Miss Patti's discussion Has anyone tried Botox for their feet & toes?
"Hi Miss Patti, Yes, please let us all know the outcome. It's always interesting to hear of…"
2 hours ago
Miss Patti replied to Miss Patti's discussion Has anyone tried Botox for their feet & toes?
"Hi sheltielife, Thank you for your response. I will be seeing my dermatologist tomorrow for the…"
2 hours ago

sheltielife left a comment for butaine
"Welcome butaine, We are a friendly bunch of people and are all pretty much struggling with a lot of…"
8 hours ago
butaine is now a member of Living With Erythromelalgia - Online Support Group
8 hours ago

sheltielife replied to Miss Patti's discussion Has anyone tried Botox for their feet & toes?
"Hi Miss Patti, I have never heard of Botox for EM but that doesn't mean it doesn't work.…"
12 hours ago
Carine replied to mads's discussion YOUR EM COMMUNITY NEEDS YOU! Dr Database: What is the the name of the Dr/specialist who diagnosed your EM and/or treating you?
"Dr Jérôme Connault in France : CHU Nantes. "
13 hours ago
Carine replied to Beth L's discussion Does EM usually worsen over time?
"Ok, you must put it on your feet 4 or 5 time a day, and try it 15 days to be sure if it is…"
15 hours ago
Beth L replied to Beth L's discussion Does EM usually worsen over time?
"Hi Carine, I just started the cream yesterday. But I have to pay $274 a month out-of-pocket for it!…"

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