Erythromelalgia

Posted by txbren @txbren, Aug 27, 2018

Are there any patients with erythromelalgia? Have you been successfully treated at Mayo?

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?

REPLY

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.

REPLY
@colleenyoung

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?

Jump to this post

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!

REPLY
@colleenyoung

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?

Jump to this post

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!

REPLY
@txbren

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!

Jump to this post

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.

Liked by jcmoffatt, hotfooted

REPLY
@txbren

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!

Jump to this post

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

REPLY

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

Liked by hotfooted

REPLY
@txbren

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

Jump to this post

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

REPLY
@txbren

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

Jump to this post

Hi @txbren,

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

REPLY

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.

REPLY
@kanaazpereira

Hi @txbren,

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

Jump to this post

Not sure why I was tagged on this one. I know nothing about erythromelalgia.

REPLY

Magnesium citrate is my best friend. Helps so much with the burning. I soak my hands and feet in mildly cold epson salt water for 10 minutes and pain subsides. Also I am taking lots of vitamins and drinking only water.

REPLY
@hotfooted

The pain is much worse if I stand for very long.. I have to keep my feet raised, because if they hang down to the floor they turn bright red and the burning gets awful. My feet feel different temperatures .. hot hot toes and ball of foot, but cold cold heels when flaring. The flares begin with either standing too long or them getting too hot. I avoid sugar now because it seems to make it worse. I distract myself as much as I can by playing games, watching entertaining or educational videos, following my dollhouse miniatures hobby and buying and selling online. I stay in touch with my family in other states by phone and that means a lot to me. My dear husband is wonderful to do the shopping and cooking, altho I still do kitchen detail and some laundry. I'm fortunate that we have a house cleaning team that come once a month.Other than the burning feet and SFN I am healthy, but lack of exercise is taking a toll on that, I'm sure! Thanks for listening… and I would like to hear from others with this malady of Erythromelalgia.

Jump to this post

Hello @hotfooted, welcome to Mayo Clinic Connect. There is another discussion on Connect where your post will receive more visibility and you can meet other members discussing Erythromelalgia. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the following discussion.

> Groups > Autoimmune Diseases > Erythromelalgia
https://connect.mayoclinic.org/discussion/erythromelalgia/

@kanaazpereira posted the following information in the discussion above.
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.

Are there any exercises that you can do that you find helpful?

REPLY

The pain is much worse if I stand for very long.. I have to keep my feet raised, because if they hang down to the floor they turn bright red and the burning gets awful. My feet feel different temperatures .. hot hot toes and ball of foot, but cold cold heels when flaring. The flares begin with either standing too long or them getting too hot. I avoid sugar now because it seems to make it worse. I distract myself as much as I can by playing games, watching entertaining or educational videos, following my dollhouse miniatures hobby and buying and selling online. I stay in touch with my family in other states by phone and that means a lot to me. My dear husband is wonderful to do the shopping and cooking, altho I still do kitchen detail and some laundry. I'm fortunate that we have a house cleaning team that come once a month.Other than the burning feet and SFN I am healthy, but lack of exercise is taking a toll on that, I'm sure! Thanks for listening… and I would like to hear from others with this malady of Erythromelalgia.

REPLY
@hotfooted

The pain is much worse if I stand for very long.. I have to keep my feet raised, because if they hang down to the floor they turn bright red and the burning gets awful. My feet feel different temperatures .. hot hot toes and ball of foot, but cold cold heels when flaring. The flares begin with either standing too long or them getting too hot. I avoid sugar now because it seems to make it worse. I distract myself as much as I can by playing games, watching entertaining or educational videos, following my dollhouse miniatures hobby and buying and selling online. I stay in touch with my family in other states by phone and that means a lot to me. My dear husband is wonderful to do the shopping and cooking, altho I still do kitchen detail and some laundry. I'm fortunate that we have a house cleaning team that come once a month.Other than the burning feet and SFN I am healthy, but lack of exercise is taking a toll on that, I'm sure! Thanks for listening… and I would like to hear from others with this malady of Erythromelalgia.

Jump to this post

Hi @hotfooted, I add my welcome. As @johnbishop recommended, I have moved your message to this existing discussion about Erythromelalgia in the Autoimmune Diseases group so that you can meet others like @katelynntiff @summershaddow @txbren @jcmoffatt.

You may also be interested in this discussion
– Burning Feet syndrome https://connect.mayoclinic.org/discussion/burning-feet-syndrome/

Hotfooted, have you had any treatment or seen a specialist?

REPLY
Please login or register to post a reply.