Erythromelalgia help please

[Carolina]

I'm a longtime member with Sjogrens.  I recently developed a very rare condition called Erythromelalgia (yeah, and I thought Sjogrens was rare and weird).

Basically during a flare my legs and feet turn bright red and hot, swell, and burn beyond belief.

I cannot find any online interactive support groups, so I'm turning to you.  Sjogrens World was my first and best support group.

I have 13 doctors and most have never heard of erythromelalgia, and the few who have heard have no ideas for help.  I was already taking all the medications recommended for erythromelalgia both RX and OTC for my profound peripheral neuropathy.  They have no apparent effect on my erythromelalgia, or maybe my erythromelalgia would be way worse without them (hard to believe, but I have read of a patient who only had relief with an epidural!)

If you can help me in any way, let me know.

Carolina

[araminta]

https://burningfeet.org/

This might be helpful.   It sounds as though if you become a member you can contact other members.

So sorry you're having to put up with this (as if there isn't enough to put up with).

[Carolina]

Thanks, Araminta,

I did join TEA.  I don't see an interactive way to speak to members, only a place to post your own story.  I'll look again.

Elaine (AKA Carolina)

[araminta]

They have a link to a Facebook page.

https://www.facebook.com/erythromelalgia/reviews

If you google Erythromelalgia Warriors there also seems to be a Facebook group with that name.  I'm not on Facebook so can't properly research it myself.