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Blog Posts

June 2014 Community Newsletter

Posted by Ben Munoz on June 29, 2014 at 10:00pm 0 Comments

Summer - the time of the year where some of our wonderful and fun memories are made. As a quote goes, "Life without love is like a year without summer."  Spend some time with your loved ones, enjoy the sights and sounds of nature and feel the…

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 Stardust67 on Monday. 29 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

Any sugestions for a good climate when you have EM and Raynauds?

Started by Twinkle Toes in General. Last reply by Mcfrank Jul 23. 14 Replies

I live in Palmdale, CA. It is the High Desert. Today its 98 degrees and not too humid. Between the Raynaud's flaring and the EM flaring I am in agony all the time. In the house and out of the house.My (separated) husband just spent $5200.00 adding a…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 on Sunday. 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

Flippant doctors...

Started by KateB in General. Last reply by Alina Delp Jul 18. 23 Replies

Hi everyone - I've been off line for a while...but I'm back! I went to Thailand recently and it was hot, and ironically my feet did not flare up as much as they do in cold weather (like right now in South Australia)... I don't really understand…Continue

new and scared

Started by Emma in General. Last reply by otrame Jul 24. 10 Replies

At least I think I am new... in the process of diagnosis. I have been diagosed with MS, IIH. Those were retracted. I have a history of a pituitary micro adenoma,  now have empty sella. I have chiaris malformation I. I started lactating 15 years ago…Continue

Tags: feet, scared, new


Started by Witsend in General. Last reply by mads Jul 5. 4 Replies

Hello All!I'm new here and newly diagnosed with EM (still trying to figure out what else is going on). I've been suffering from severe fatigue, tingling, numbness (in arms, lower legs, hands, and feet), vertical ridges on fingernails, swollen lips,…Continue

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Latest Activity

Tired replied to ConcernedMomma's discussion Newly Diagnosed
"Hi ConcernedMomma, My heart breaks for your son!  I am newly diagnosed as well so probably…"
1 hour ago
blue replied to Tired's discussion Achy legs
" Yes. Exactly. Blue "
1 hour ago
Tired replied to Tired's discussion Achy legs
"Hi Blue, Yes I think you are right that it was called a doppler.  I don't have varicose…"
1 hour ago
Mona liked ConcernedMomma's discussion Newly Diagnosed
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This Week on Living With Erythromelalgia 

1 Ocker


Melbourne, Victoria, Australia

2 jimm


Boca Raton, FL, United States

3 Fixme


San Diego, CA, United States

4 Michelle Stewart

Michelle Stewart

Courtenay, British Columbia, Canada

5 ConcernedMomma


Ontario, Canada


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