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Blog Posts

Something potentially positive

Posted by Davipot on April 12, 2015 at 9:25pm 0 Comments

 Just thought I would update you all on where we are , this information could be potentially relevant and I'll post it on the forums when Emily starts her treatment.

So ,…


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.


Hello everyone - My story

Started by snowshoe03 in General. Last reply by pdxgal 23 hours ago. 17 Replies

Thank you for the warm welcome.   I'm grateful to have this community to share with and learn from.  I will share my story with you. I am new to EM.  I diagnosed myself from searching on the internet about 6-7 weeks ago, and then went to see my…Continue

Temperature controllable shoes

Started by mnp in General. Last reply by Jon_sparky Apr 12. 10 Replies

Hi all, I just came across Peltier coolers or heat pumps as a technology that might help EM sufferers if used in shoes. Low and behold there is a patent on them and a research project at ETH Zurich. Unfortunately I haven't found any commercial…Continue

Venous Insufficiency and EM

Started by Ocker in General. Last reply by erikdc Apr 6. 15 Replies

HiI have been getting fluid in my ankles and feelings of fluid falling down my legs when I get up in the morning.All of this I assume is from Venous Insufficiency in my deep veins of my legs.I also get the burning feet episodes and muscle…Continue

Venlafaxine HCL 75mg

Started by Sky in General. Last reply by Lynne Apr 9. 20 Replies

At my request, my neurologist prescribed me Venlafaxine. I have taken 75mg for the first week and now up to the recommended 150mg. I saw a change withing 2 days when my current flare came to almost an abrupt stop. Since, I have seen an amazing…Continue

Red ears, face, feet

Started by Wanderer in General. Last reply by Alina Delp Apr 14. 21 Replies

I was excited to see another pic of red ears! :-) I went for a long time not knowing what was going on with me. At first I thought it was Raynaud's. My dermatologist told me it was an autonomic problem. My neurologist has lots of ideas what my…Continue

Tags: feet, hands, ears, red

Cool tips!

Started by mads in General. Last reply by Jimmy Y Apr 14. 55 Replies

Hi Guys,We all have our own 'cooling methods' for flaring . Many of us actively minimise triggers and make specific lifestyle changes, too.What cool tips do you have?God blessmadsContinue

Has anyone had symptoms come out after Surgery?

Started by jenl20102010 in General. Last reply by Alina Delp Mar 31. 18 Replies

Hi, My my name is Jen and I have recently been diagnosed with EM.  I have a history of Raynouds and other than that was healthy.  I recently had major surgery and than everything went down hill from there.  My legs, toes, feet and hands…Continue

Lets all smile:) What are the 'best' things about EM?

Started by mads in General. Last reply by ConcernedMomma Apr 6. 15 Replies

They say laughter is the best medicine :)We found this satirical caption quite amusing. Amidst our pain and tears ,its certainly good to be able to laugh and smile once in a while. Laughter also boosts our endorphins. Beta-endorphins are…Continue

Tags: medicine, best, EM, humour, laughter


Started by jenl20102010 in General. Last reply by Dragica 28 minutes ago. 25 Replies

I was asking on another EM Group that I belong too about these tiny pinpoint red dots that have been appearing on my legs, mostly in the areas where I get flares.  Interesting enough, I have found out that there are  other EM sufferers who get this…Continue

Chronic Chilblains (Worse when warm)

Started by Redhead47 in General. Last reply by mads Apr 11. 24 Replies

Hi Everyone,I just joined this group because I'm struggling with a chronic case of chilblains that hasn't been responding very well to typical forms of treatment. I suspect I may have erythromelalgia, but I have not been diagnosed. I want to open a…Continue

Tags: chilblains

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Latest Activity

Dragica replied to jenl20102010's discussion Petechiae
"Hi MtnGypsyGirl. Thanks for your reply. My EM is pretty bad these days, mostly because of the skin…"
28 minutes ago

mads left a comment for nena
"Thank you for your kind words. Merci beaucoup!!!!!!!! May i ask you for that Dr name in American…"
53 minutes ago
MtnGypsyGirl replied to jenl20102010's discussion Petechiae
"Hi Dragica, I have/had EM definitely everyday and can usually keep my pain to a moderate pain…"
58 minutes ago
Dragica replied to jenl20102010's discussion Petechiae
"HI MountainGypsyGirl. Thanks for the details. How badly did you have EM? Say on a scale from…"
1 hour ago

mads replied to mads's discussion Killing your gut : Dietary link - could we be missing something?
"Gut- brain connection in mental health and chronic…"
1 hour ago

mads replied to mads's discussion Polyherbacy :A common challenge in pain patients ( NB: includes a case study which reports significant reduction on vitamins/elimination diet and how to alleviate neuropathy)
"More and more studies are pointing to vitamin D deficiency playing some role in Fibromyalgia and…"
2 hours ago

mads replied to pdxgal's discussion My Story
"Hi there, Apologise that im not well enough to get back on line properly. Just wanted to quickly…"
2 hours ago
Jon_sparky posted a discussion

One cold hand...

I just started getting one cold hand and one warm hand, strange sensation... I have been dealing…See More
6 hours ago

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