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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

Doing Great!!!!!!!!!

Posted by Rg on February 23, 2015 at 1:33pm 0 Comments

Thanks so much for the cake.I am glad to report that I am doing great!Still taking Cymbalta and Gaba 100mg once a day.

I have very few flares now.

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.

Forum

Shoes and Socks

Started by coastal_spirit in General. Last reply by K-ren on Sunday. 18 Replies

Does anyone have any recommendations of what kinds of shoes and socks can be worn to cause the least pain and inflammation? I don't wear shoes or socks at all in the house, summer or winter, but we have loads of snow and slop this winter, and I…Continue

Gabapentin

Started by ConcernedMomma in General. Last reply by Dreamline on Tuesday. 17 Replies

Has anyone been prescribed this medication for erythromelalgia? My son just was today and I was reading side effects and it has me worried.I want something that will help him with pain but not sure if side effects are worth it?Continue

Comfortable sandals---what do you recommend?

Started by houseboat queen in General. Last reply by Cathyc Feb 18. 18 Replies

What brand of sandals do you recommend?  I have tried many different brands and am not pleased with any of them.  They all cause my feet to flare.  Besides flaring my left heel is always in pain.  Not sure if that is EM related or something else. Continue

Anyone attempt fasting?

Started by Sky in General. Last reply by mads on Tuesday. 17 Replies

Considering a water only 10 day fast. If you've fasted, what kind, how long, and any changes?

List of pain Medication for EM but what if i only have warmth/redness/vasodilation? (Also anyone else possible Accutane induced EM ?)

Started by Deon in General. Last reply by mads Feb 6. 28 Replies

I tried Aspirin and Gabapentin but they did not help because i do not have "Pain" with my EM. I experience more of a vasodilation and heavynesss in the arms while my hands get very hot and red. Most medications i have seen being recommended are for…Continue

My mouth is on fire! Having tongue and palate flares.

Started by mads in General. Last reply by Caressa Feb 20. 3 Replies

Just when I thought there was no where left to flare,my tongue, lips and palate are on fire They feel and look like they have been badly scalded, sense of taste is distorted (metallic like), i have severe xerostomia (dry mouth)  and  horrible sore…Continue

Tags: loss, of, taste, metallic, ulcers

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Latest Activity


Moderator
Nel left a comment for Mkl
"Hello Mkl. Welcome to the group. I'm sorry you have the full range of EM. I know how…"
2 hours ago
Jon_sparky replied to mads's discussion SPOTLIGHT ON: Living with Erythromelalgia and Raynauds
"Hi Jim, I have had EM for close to 40 years, I was first just diagnosed with Perepheral Neuropathy,…"
3 hours ago

Moderator
Alina Delp replied to Nel's discussion Six nights in bed with a wine bottle cooler
"That is funny we both get a little better the same time in the morning! I do the same as I think…"
10 hours ago

Moderator
Alina Delp left a comment for Martin
"Welcome to the group Martin. I'm glad you found us! I'm sorry you have had this for so…"
10 hours ago

This Week on Living With Erythromelalgia 

1 Gabapentin

Gabapentin

Posted by ConcernedMomma on February 11, 2015

2 Anyone attempt fasting?

Anyone attempt fasting?

Posted by Sky on February 22, 2015

3 My mouth is on fire!  Having tongue and palate flares.

My mouth is on fire! Having tongue and palate flares.

Posted by mads on February 20, 2015

4 infusions and surgery

infusions and surgery

Posted by Claire-Ellen on February 21, 2015

5 Burning feet and Ice cold feet

Burning feet and Ice cold feet

Posted by Jon_sparky on February 20, 2015

 
 
 

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