Living With Erythromelalgia - Online Support Group
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.
New guy with Spinal Cord Injury looking for answers
Diagnosis seems to be impossible
Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them
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About Bens Friends
New Member Introductions
New members, start your experience here. Introduce yourself and share your story. Let us welcome you
Hi everyone! EM and Raynauds
Newly Diagnosed and Still Struggling with Pain
New Member - EM diagnosis pending
(Included in this category are resources written by members by members and notes from the moderators. We strongly encourage all members to explore these pages. This category will grow over time to include more and more information
Kiddies care for Parents
General EM Discussion
Open discussion about EM
Erythromelalgia or Reflex Sympathetic Dystrophy?
Veins enlarded, anyone at all with EM have this?
Symptoms and Their Management
Tell us all about your symptoms. What works and what doesn't?
Is it normal to experience joint pain & swelling with EM?
Feet/ hands are only comfortable when cold
Thighs burn when I am sitting!
Hand and Footwear
Because when you have EM, footwear really matters
Found comfortable mesh sneakers!
Temperature controllable shoes
This is the place to discuss all the healing modalities that help you cope with EM and help you nourish your mind, body, and spirit. Please remember to discuss any new therapies you are considering trying with your physician.
Anyone tried Ultrasound Therapy?
Any thoughts on Hyperbaric Oxygen Therapy?
Having a rough time? We're here to listen and support.
Suicide Hotline Numbers
I hate this ******* disease! it has taken EVRYTHING
Words mean so much: Helpful things to say to someone in chronic pain
Recommend a Doctor, Therapist, or Clinic (Positive
Want to recommend a doctor, therapist, or clinic? Positive review only, please.
YOUR EM COMMUNITY NEEDS YOU! Dr Database: What is the the name of the Dr/specialist who diagnosed your EM and/or treating you?
Doctor in Florida?
Help with doctors for treatments!
What's New With You?
Tell us what you have been up to lately.
Ivig. 3 weeks later. Hopeful!
Meds for remission
Share the things that brighten your days and make you smile.
Something inspirational for us! . One young lady in USA has found a way to cope with EM
Ways of coping
A story for those feeling defeated
Prayer and Healing Energy Requests
A place to request prayers and healing energy for yourself or others, from our community of caring, supportive friends, for any issue(s) we deal with.
This is our new chat. Just reply. If you want to go to a private chat simply click on the mebers avatar and start messaging. You can invite others to join you. For now we don't have a "who's online" box but hope to add that feature soon!
Articles and Research
The studies in this section may be preliminary rather than authoritative and may not be peer reviewed. They are here for your information, but should not be used as recommendations for new treatments, diets, or supplements.
SPOTLIGHT ON: Living with Erythromelalgia and Raynauds
EM associated with Raynaud's
Good article on relationship of SFN and EM
Events of interest to EM Patients. Just email to have the staff add your event.
News from Bens Friends -
Discussion about this site, its organization, how it works, and how we can improve it.
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