Anyone out there with Erythromelalgia?

Hi @txbren, welcome to Connect.
We've had a few members talk about burning feet and hands, like @jlor and @skullborous.
- Burning Feet syndrome https://connect.mayoclinic.org/discussion/burning-feet-syndrome/

But I'm not sure if they were diagnosed specifically with erythromelalgia (https://rarediseases.org/rare-diseases/erythromelalgia/)

Txbren, do you experience burning in both hands and feet? Can you tell us a bit more about your situation, how long have you experienced erythromelalgia and how it is being managed?

Hi @txbren,

There is an Erythromelalgia Clinic in Minnesota which serves as a focal point for clinical research at Mayo Clinic. The care at the Erythromelalgia Clinic is guided by a team of doctors, including specialists in dermatology, neurology and vascular medicine. These specialists work together to offer you specialized skin testing, an accurate diagnose and a treatment plan that meets your needs. This page – https://www.mayoclinic.org/departments-centers/erythromelalgia-clinic-in-minnesota/overview/ovc-20421220 – has more details, and a video in which Mayo Clinic dermatologist Mark Davis, describes erythromelalgia and treatment options.

Along with @colleenyoung, I look forward to hearing from you and getting to know you better.

The erythromelalgia started April 24,2018. It is absolutely stopping everything I am able to do, even walking inside, because of the burning heat & pain. I am searching for new medicine, on Gabapentin now and it does nothing, and researching for a successful treatment!

My hands sting and burn in heat, but my feet are th worse. I have been diagnosed since April 2018 with Erythromelalgia, and also Peripheral Neuropathy. I am taking Gabapentin and CBD oil, but nothing but “cold” helps!

Yes, my feet are the worst. I’m actually on the same meds as you! I’ve been advocating for myself since middle of June. It’s exhausting physically and mentally.

I am now on Lyrica,Symbalta, and asprin. No changes! Anyone have any good solution?

I amon Gabapentin and Cymbalta. Burning has moved up my intire right side. I wonder why one side?

Hi @txbren, I have peripheral neuropathy but only numbness and some tingling in both my feet and lower part of the legs. I think you ask a really good question but I'm not sure that any of us here on Connect can give you an answer other than guesses (which wouldn't be good to do) since most of us have no medical training or background.

Have you posed the question to your doctor?

John

Hi @txbren,

I’m tagging @summershaddow who have also mentioned erythromelalgia; I hope they may be able to offer more insight.

I’ve been diagnosed but haven’t gotten treatment or an appointment at Mayo yet. I seemed to have gotten a good deal of relief with Plaquenil (Have SLE and Sjogren’s) but had to discontinue due to side effects. Since stopping the Plaquenil symptoms have begun to return. Many have success with that medication, but some of us don’t tolerate it well. Sorry I can’t give any insight on Mayo Clinic experiences.