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.


Since site content and usernames are google searchable, please protect your anonymity by creating a unique username.

To change your username, 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.


Bed fan?

Started by jen in General 3 hours ago. 0 Replies

http://m.brookstone.com/bed-fan-with-wireless-remote Anyone seen or used this?Looks like something we can all benefit from.

Ayurvedic medicines

Started by Ejderha in Complementary Therapies. Last reply by Ejderha yesterday. 9 Replies

Dear LWE members, I have a question about ayurvedic medicine. Here is story before my question: I sent my health story (including EM with my facial pictures and blood tests etc. besides allergic asthma problem)  to one of my friend who is…Continue

I am asking for some opinions/advice/thoughts on an upcoming appt. with Dr. Davis at Mayo Clinic

Started by Twinkle Toes in General on Tuesday. 0 Replies

Hi to everyone.I have an appt. soon with Dr, Davis and have a lot of concerns. I am living in S. CA., so getting to Minnesota is going to be a HUGE problem. Also from all of my recent research on him it seems that he mainly diagnoses you, not much…Continue

19 pm ...

Started by Melodie in General. Last reply by rondp43 on Tuesday. 8 Replies

Hi,Every evening around 19pm, I started to have cold with chills throughout the body and at the same time my feet become more red and hot.Is it the same for you?Continue

Itching at the scalp

Started by Melodie in General on Tuesday. 0 Replies

HiI would like to speak about another health problem: since a few weeks I have strong itching at the scalp, especially in the evening and shortly after I started to lose a lot of hair. My doctor prescribed me to of iron and zinc but without…Continue

How does Gabapentin help erythromelalgia

Started by Bonnie in General on Monday. 0 Replies

My daughter asked, I don't know the answer.Proving hard to find answer on web.She's also on Niefidical. She wants to knowhow these meds are helping. Thanks in advance for your response!Continue


Started by Jason in General. Last reply by MMG on Monday. 6 Replies

Has anybody had any success with Cymbalta?Continue

Hi I am a new member- daughter has EM

Started by Bonnie in New Member Introductions. Last reply by Bonnie on Sunday. 2 Replies

Glad to have found your group. I am sure I willbe doing a lot of reading. Our 16 yr old daughterwas dx a few years ago, but honestly had it longerShe has been on niefidical and has helped but not completely.StartingGabapentin this week.Continue

EM in palms of hands

Started by Alina Delp in Symptoms and Their Management. Last reply by ajcb bella on Sunday. 5 Replies

Hi all. I have Had very active EM about 5 years on most of my body at various times but never on the palms of my hands till yesterday. It was sudden when washing my hands at the typical temp I usually do. It was some of the worst burning pain I've…Continue

Need help with diagnosis: EM or CRPS, or ?

Started by sammy in Symptoms and Their Management. Last reply by sammy Jul 25. 6 Replies

Hello all,I have symptoms that suggest both EM and CRPS.  My Neurologist thinks EM, the Vascular doctor thinks CRPS, and wants me to get a sympathetic nerve block next to spine.  I have had peripheral neuropathy, and in addition, my right foot gets…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

jen posted a discussion
3 hours ago
Roach131 posted a status
"Has anyone used Midodrine HCL plus 0.2% gel? If so, what were your results?"
JW13 updated their profile

sheltielife left a comment for JW13
"Welcome Julien, I am sure you will get a lot of help from people here, as I have done. You see…"
Ejderha replied to Ejderha's discussion Ayurvedic medicines
"I am sorry but I could not really say if it worked or not. I started to take it on March and I…"

Jules G left a comment for JW13
"Hello Julien, welcome to our community. We have lots of helpful information and management tips…"
JW13 is now a member of Living With Erythromelalgia - Online Support Group
brenda80 replied to Ejderha's discussion Ayurvedic medicines
"My dictionairy on my Phone makes other words I meant that I m curious about this therapy!"

This Week on Living With Erythromelalgia 

1 Cymbalta


Posted by Jason on July 26, 2015

2 19 pm ...

19 pm ...

Posted by Melodie on July 25, 2015

3 Spinal Cord Stimulator implant.  First hand experience from Tizzy

Spinal Cord Stimulator implant. First hand experience from Tizzy

Posted by Nel on July 24, 2015

4 New here!!first reacted on aspirine but it doesn't work any more.

New here!!first reacted on aspirine but it doesn't work any more.

Posted by brenda80 on July 25, 2015

5 Not a confirmed diagnosis, yet.

Not a confirmed diagnosis, yet.

Posted by Mimioftwins on July 22, 2015

6 Hi I am a new member- daughter has EM

Hi I am a new member- daughter has EM

Posted by Bonnie on July 25, 2015

7 EM in palms of hands

EM in palms of hands

Posted by Alina Delp on January 29, 2015

8 Ayurvedic medicines

Ayurvedic medicines

Posted by Ejderha on February 24, 2015


© 2015   Created by Bensfriends.org

Badges  |  Report an Issue  |  Terms of Service