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Ben's Friends Monthly Newsletter - July 2014 Issue

Posted by Scott Orn on July 31, 2014 at 11:25am 0 Comments

Just the Stats:



Welcome New Members and Greetings from Ben's Friends!


"You're a firework," as the song goes. We…

ClinicalTrials.gov Studies


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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.


How long have you had EM for?

Started by Ocker in General. Last reply by Laurent85 on Sunday. 30 Replies

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

Erythromelalgia: An Underrecognized Manifestation of Small-Fiber Neuropathy

Started by Fixme in Recommend a Doctor, Therapist, or Clinic (Positive Review Only). Last reply by dkel9307 Jul 26. 23 Replies

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

Tags: Report, Clinic, Mayo

I don't know but I think it helped.....

Started by Pilgrim in General. Last reply by Nel Aug 16. 19 Replies

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

Newly Diagnosed

Started by ConcernedMomma in General. Last reply by mads Aug 6. 19 Replies

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


Started by mads in General. Last reply by blue Aug 5. 7 Replies

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

Pain and Seizure Relief

Started by dkel9307 in General. Last reply by dkel9307 Aug 11. 12 Replies

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

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Latest Activity

Laurent85 liked liz's discussion Autoimmune diseases as underlying condition in secondary EM
4 hours ago

mads replied to ZachMXaf's discussion Hoping for some help and possibly some support.
"Dear ZachMXaf, I am so sorry you might have EM. Whilst we can not give you a diagnosis or medical…"
5 hours ago

Nel replied to ZachMXaf's discussion Hoping for some help and possibly some support.
"Hi Zach! It sounds like EM and it also sounds as though the medics have checked you pretty…"
5 hours ago

mads left a comment for isseymoss
"Dear Isseymoss, Welcome to the family.! You will find us a very caring, sharing, supportive bunch…"
5 hours ago

This Week on Living With Erythromelalgia 

1 dkel9307


South Australia, Australia

2 Laurent85


Hemet, CA, United States

3 Stardust67


Newcastle, United Kingdom

4 ZachMXaf


Browns Mills, NJ, United States

5 Hope4Hae


Perry, OK, United States


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