Welcome! You're not alone.

Getting Started:

1. Become a Member
2. Make Friends
3. Post to a Forum
4. Read or write a Blog
5. Join or Create a Group


Check our FAQ PAGE and First-Time-User Guide.


To maintain your privacy in a googly-universe, please do not use your real-life name.
Because we are a peer-to-peer support network, we ask that members not include honorifics, degrees or professional designations such as RN, Imam, PhD, LLB, Dr, MSW, Sr, Dame, Rev, DO or similar in their screen name. We will not approve these after Sept 2015.

To change your screen name, click here. 


All of the material provided on this site is for informational purposes only and is not a substitute for professional medical advice or treatment.

Always seek the advice of your physician or qualified health provider with any questions regarding your health.

Do not disregard professional medical advice or delay seeking it because of something you read on this site.

Our Guidelines

Let's Keep it Nice & Clean
  1. Describe (share experiences), not Prescribe (suggest treatment for others).
  2. No spam.
  3. No personal attacks or defamatory posts.
  4. No offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos).
  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. No solicitations or promotions of goods or services. No fundraising without the permission of the moderators.
  8. No email addresses or phone numbers on the forum, for your security.
  9. Religious content must be restricted to the prayer group.
  10. No politics, please.

Thanks for your cooperation.

Community Moderators

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

Please send a private message to a moderator.


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.


heat desensitization

Started by Carine in General 10 hours ago. 0 Replies

Hello all, I want to share with you an experience I tried right now ... This will seem horrible to you, but ultimately it is not so! Well, it's been that I like idea of trying a heat desensitization to my feet. For 6 months, I stopped the ice, and I…Continue

EM, Neuropathy and Fluoroquinolones

Started by joyfulj in General. Last reply by FLOXED 21 hours ago. 12 Replies

Hi, my name is Jenn. I'm 23 years old and was recently diagnosed with EM. This past November, I was given Avelox ( A fluoroquinolone drug ) for a sinus infection. I have suffered severe adverse reactions from this drug. It started out initially with…Continue

thighs burn when I am sitting!

Started by Amy in Symptoms and Their Management yesterday. 0 Replies

I have been having a rough time with my thighs! I have Livedo per derm and i know that isn't supposed to hurt. Problem is my thighs are burning big time.Ouch!! If I get up and move around I am fine.I am becoming really  upset by this and fear that…Continue

Is it normal to experience joint pain & swelling with EM?

Started by BNashville in Symptoms and Their Management. Last reply by Amy yesterday. 7 Replies

Hi, I'm new to the group, and I do not have a diagnosis. However, I have been experiencing the symptoms of EM since mid-February. I have been to multiple appointments w/primary care doctor and a rheumatologist twice. When I asked the rheumatologist…Continue

Mobile App

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

Latest Activity

joyfulj updated their profile
3 hours ago

sheltielife left a comment for FLOXED
"That's great that you already feel assisted."
3 hours ago
FLOXED left a comment for sheltielife
"Thank you, Sheltielife, for your warm welcome. I already feel assisted just by belonging to this…"
3 hours ago

sheltielife left a comment for 45Pain
"Welcome 45Pain to Living with EM. So glad you have joined us. It helps to be able to speak to…"
10 hours ago

This Week on Living With Erythromelalgia 

1 Is it normal to experience joint pain & swelling with EM?

Is it normal to experience joint pain & swelling with EM?

Posted by BNashville on May 20, 2016

2 EM, Neuropathy and Fluoroquinolones

EM, Neuropathy and Fluoroquinolones

Posted by joyfulj on April 26, 2012

3 heat desensitization

heat desensitization

Posted by Carine on May 26, 2016

4 thighs burn when I am sitting!

thighs burn when I am sitting!

Posted by Amy on May 25, 2016

5 contraceptive pill

contraceptive pill

Posted by Carine on May 23, 2016


© 2016   Created by Bensfriends.org   Powered by

Badges  |  Report an Issue  |  Terms of Service