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Doctors List

ClinicalTrials.gov Studies

Dorsal Root Ganglion Stimulation for the Management of Painful Intractable Small Fibre Neuropathy:

Condition:   Neuropathy Small Fibre
Intervention:   Device: Spinal Modulation Axium™
Sponsor:   Dr med. Paolo Maino Viceprimario Anestesiologia
Not yet recruiting - verified April 2015

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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.


How do you deal with the side effects from medication?

Started by Nel in General. Last reply by sheltielife 3 hours ago. 14 Replies

Thinking of brain fog from Pregabalin, constipation from pain killers, rashes etc. I react so badly that I won't even try new medication. I have decided it is better to just manage the flares; at least my head stays clear.Do you think it is worth…Continue

Hi Everyone - I'm New

Started by nwgirl in New Member Introductions. Last reply by erikdc on Wednesday. 7 Replies

Hi Everyone,I have been dealing with EM for over a year.  I have seen numerous specialists in the attempt to get a diagnosis and EM was finally confirmed (based on reported symptoms and photos) earlier this month.  It was really quite surprising how…Continue

The Norwegian Connection

Started by Heidi in General. Last reply by music88 yesterday. 8 Replies

Hi Everyone, I was interested to read that the occurence of EM is more prevalent in Norway than anywhere else.im wondering why this is the case. Of note despite working for many doctors in NZ none of them have EVER heard of it. I have 3 sisters in…Continue


Started by Kate in General. Last reply by COG 11 hours ago. 5 Replies

Hi just wondering if anyone has tried nifedipine for EM (burning and erythema) and what effect it has/had? I know it is prescribed for raynaulds (which I also have) and is sometimes effective in em too. Thanks

Red toes

Started by Greykillieboy in General. Last reply by Only flip flops on Tuesday. 9 Replies

New to this. As I wrote beforeHad this problem for 3 yrsStarted of as pain under small toeMoved to both feetDoc thought it was a neuroma3 yr down the line , my feet get cold , thenAll of a sudden my toes go red and stingyThey cool down after 10…Continue

anyone else suffer from twitching/shaking jerking muscles

Started by ajcb bella in General. Last reply by larson_kelseym 19 hours ago. 9 Replies

apart from another lady on here who i know of. does anyone else know of links through EM and jerking muscles. my body most days different limbs at different times will twitch.maybe my arm leg then head will be in a order of twitches. i had EEG just…Continue


Started by Jilly in Symptoms and Their Management. Last reply by Madere (dancermom) May 23. 9 Replies

Hi my Gabapentin has been increasing slowly now at 3800mg and have found intense hunger does anyone know if that is a side effect ? Thanks

EM doc in Melbourne, Australia?

Started by MeowMachine in Recommend a Doctor, Therapist, or Clinic (Positive Review Only). Last reply by MeowMachine May 20. 3 Replies

Hellooo :) Just thought I would make a post asking if anyone was aware of a doc that might be knowledgeable about EM - in Melbourne, Australia. Continue

Looking for a dr in frederick baltimore dc area

Started by tpperez in Recommend a Doctor, Therapist, or Clinic (Positive Review Only). Last reply by thisgirlisonfire May 18. 10 Replies

My daughter is 17. she has been battling thoracic outlet syndrom for a few years now. she had surgery on her right side inb febuary. shortly befor her surgery she started to have really bad nerve pain and symptoms in her hand. also started turning…Continue

Could It be EM

Started by Leann in New Member Introductions. Last reply by Leann May 15. 5 Replies

Hi, I've joined this group as i am having problems with my hands and feet and the doctors don't have a clue what it is and was looking for some advice. I may talk alot about my migraines too but i think they may be linked in me.In spring 2014 one…Continue

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Latest Activity

sheltielife replied to Nel's discussion How do you deal with the side effects from medication?
"Nel I don't know if I am allowed to do this but I have found the info about reporting drug…"
3 hours ago

Nel replied to Nel's discussion How do you deal with the side effects from medication?
"Thanks Dragica. Your advice is always sound. I might give Lyrica another try. So many of the drugs…"
4 hours ago
Dragica replied to Nel's discussion How do you deal with the side effects from medication?
"Miss Patti. Good luck with your meds--I think you might have some benefit from the combo of Lyrica…"
10 hours ago
COG replied to Kate's discussion Nifedipine
"I was taking Nifedipine for 10 years before EM. Unfortunately stopping made no difference. I tried…"
11 hours ago
Miss Patti replied to Nel's discussion How do you deal with the side effects from medication?
"Hi Dragica, I believe you are right on. My dermatologist wanted me to try Trental for my EM. The…"
14 hours ago
Dragica replied to Nel's discussion How do you deal with the side effects from medication?
"Hi Nel. I know it isn't easy and you are suffering so much. I found that compounding…"
15 hours ago

Nel replied to Nel's discussion How do you deal with the side effects from medication?
"I know you are right Dragica but it isn't easy. Some or the tablets are just so difficult to…"
15 hours ago
Dragica replied to Nel's discussion How do you deal with the side effects from medication?
"HI Folks. I  know I'm starting to sound like a broken record, but I honestly believe…"
15 hours ago

This Week on Living With Erythromelalgia 

1 How do you deal with the side effects from medication?

How do you deal with the side effects from medication?

Posted by Nel on May 28, 2015

2 The Norwegian Connection

The Norwegian Connection

Posted by Heidi on May 26, 2015

3 Red toes

Red toes

Posted by Greykillieboy on May 25, 2015

4 Hi Everyone - I'm New

Hi Everyone - I'm New

Posted by nwgirl on May 26, 2015

5 Nifedipine


Posted by Kate on May 26, 2015

6 anyone else suffer from twitching/shaking  jerking muscles

anyone else suffer from twitching/shaking jerking muscles

Posted by ajcb bella on May 23, 2015

7 Pain psychology, ACT and Mindfullness

Pain psychology, ACT and Mindfullness

Posted by lauraflora1 on May 11, 2013

8 Doctor in Florida?

Doctor in Florida?

Posted by LibbyK on May 24, 2012


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