Welcome! You're not alone.

If your family has been affected by Erythromelalgia, consider Living With Erythromelalgia your second home.


1. Become a Member
2. Make Friends
3. Post to a Forum
4. Read or write a Blog
5. Join or Create a Group
6. Follow us on Twitter
7. Become a fan to our Facebook

Got some QUESTIONS? 
Check our FAQ PAGE.

Read More from our  First-Time-User Guide.

Concerned About Privacy

Since content and usernames are searchable on this site, you may protect your anonymity by creating a unique username.

To change username, click here. 

We are patients living with erythromelalgia, here for your support.


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

Community Moderators

Have a question, concern, or suggestion? Or would you like to volunteer?

Please send a private message to a moderator.






BensFriends.org is proud to partner with a number of organizations to help our members in various areas, including legal, financial, research and medical. 

Know more about our PARTNERSvisit this link.


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.


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


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

Mobile App and E-Book Available for Download!

Keep in touch with friends. Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now!

Learn how others cope and be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.

Latest Activity

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

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

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


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


Help Us Help Others

Help Ben's Friends

Like & Follow Us!

Follow Me on Pinterest

Give Us A Review

Bens Friends

To Support LivingWithErythromelalgia.org, Click an Ad. Or Two.

Are You in Crisis?

First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

For international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.

Please Be Kind & Use Appropriate Language

Let's Keep it Nice & Clean
1. No Spam
2. No Personal attacks
3. No Offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos)
4. No Profanity.  Sexual references and illegal activity subject matter in the Chat Room.   
5. No specific doctor or hospital name mentioned in a negative context, for legal reasons. 
Specific doctor or hospital names in a positive context are welcome.
6. No sharing of members' posts to other sites without their express permission.
7. There are many sites for discussing religion and politics. This is not one of them. Divisive posts about religion and politics will be deleted.
Thanks for your cooperation.

Join Ben's Friends



Gift Store




© 2015   Created by Bensfriends.org

Badges  |  Report an Issue  |  Terms of Service