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Erythromelalgia treatment and autoimmune

Posted by haileyrose @haileyrose, Apr 28, 2024

Hi all,

I (31, F) have been experiencing Erythromelalgia for about 1.5 years. I was diagnosed officially about 6 months ago.
-Asprin didn’t help
-Magnesium does seem to help.
-I have symptoms the worst in my hands, then feet, and also at times get redness on my face and ears as well.

I’ve had various other random symptoms over the last 10 years which lean towards being possibly autoimmune related. Because of this, I recently was referred to a rheumatologist who flat out denied that Erythromelalgia is related to or coincides with autoimmune conditions. I was flabbergasted by this.

So now I’m at square one, and am receiving no treatment for my EM. Any insights or suggestions? I feel stuck and frustrated.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 28, 2024

@haileyrose Welcome to Mayo Clinic Connect! I’m glad you found this site and hope that you get the help you want. I wonder what that rheumatologist thinks EM is related to?! They didn’t sound too helpful. You might try contacting a university medical center or comprehensive medical center in your state for help. The doctors there are a bit more informed than community doctors. When I got sick with an autoimmune disease, the local doctors were completely stumped. Only 1 neurologist recognized the MRI results but didn’t know how to treat the disease. My husband called to university medical center in Denver and we were able to get an appointment. If the medical centers are too far away, they may give you a recommendation of a good doctor in your area.
OR, you can contact these rare disease organizations. They can help you find a doctor.
https://rarediseases.org/living-with-a-rare-disease/
https://rarediseases.info.nih.gov/. They have similar names but they are different!
Do you think it best to call the 2 organizations first before you set off on a road trip?
And how did you find Mayo Connect?

REPLY
piemonte | @piemonte | Mar 10 8:56am

Erythromalalgia is a condition that causes burning and redness in the hands and feet. I become symptomatic when I exercise and when I sleep. Nighttime is the worst. I go to bed with cold feet and wake up a few hours later with burning red feet.

Has anyone else struggled with this condition?
Thank you.

REPLY
5 replies
gregd1956 | @gregd1956 | Mar 11 5:45pm
In reply to @piemonte "Erythromalalgia is a condition that causes burning and redness in the hands and feet. I become..." + (show)
@piemonte

Erythromalalgia is a condition that causes burning and redness in the hands and feet. I become symptomatic when I exercise and when I sleep. Nighttime is the worst. I go to bed with cold feet and wake up a few hours later with burning red feet.

Has anyone else struggled with this condition?
Thank you.

Jump to this post

Dear @piemonte
I need & use from my feet up thru the rest of my legs. If I use the wrong thing, my right foot is pupped up and is cold and a lost balance or less feeling on my right foot.

That’s a disease and keep my legs during the day like foot-leg closes. According to my wife gets worse, if I don’t keep these from my top legs to the bottom of my feet.

As I get older I need to help my legs/feet - daily. Physical exericinrg has been decades way before my brain-injury bicycle accident from 2012. I got a 3-bicycle thing and helps the strength of my inside muscle. But, I still need holding my legs-feet.

Thx,
Greg D @greg1956

REPLY
itchyd | @itchyd | Mar 14 12:40am
In reply to @piemonte "Erythromalalgia is a condition that causes burning and redness in the hands and feet. I become..." + (show)
@piemonte

Erythromalalgia is a condition that causes burning and redness in the hands and feet. I become symptomatic when I exercise and when I sleep. Nighttime is the worst. I go to bed with cold feet and wake up a few hours later with burning red feet.

Has anyone else struggled with this condition?
Thank you.

Jump to this post

Sorry to hear of your suffering. I haven't had erythromelalgia. But, I did have a brief bout of idiopathic peripheral neuropathy a few years ago that was quite distressing.
You don't mention any treatment(s) you may be trying. Are you getting professional care?
Again, sorry for your pain.

REPLY
piemonte | @piemonte | Mar 14 7:15am
In reply to @piemonte "Erythromalalgia is a condition that causes burning and redness in the hands and feet. I become..." + (show)
@piemonte

Erythromalalgia is a condition that causes burning and redness in the hands and feet. I become symptomatic when I exercise and when I sleep. Nighttime is the worst. I go to bed with cold feet and wake up a few hours later with burning red feet.

Has anyone else struggled with this condition?
Thank you.

Jump to this post

Thank you for your support. There are no remedies at this point. My doctor said taking aspirin can help. I’m on Eliquis so I can’t take aspirin.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Mar 14 7:52am
In reply to @piemonte "Erythromalalgia is a condition that causes burning and redness in the hands and feet. I become..." + (show)
@piemonte

Erythromalalgia is a condition that causes burning and redness in the hands and feet. I become symptomatic when I exercise and when I sleep. Nighttime is the worst. I go to bed with cold feet and wake up a few hours later with burning red feet.

Has anyone else struggled with this condition?
Thank you.

Jump to this post

Hello @piemonte, Here's another related discussion that you might find helpful:
-- Erythromelalgia treatment and autoimmune: https://connect.mayoclinic.org/discussion/erythromelalgia-treatment-and-autoimmune/

Here's a search link that lists other discussions and comments on Erythromelalgia - https://connect.mayoclinic.org/search/discussions/?search=erythromalalgia

REPLY
januaryjane | @januaryjane | Mar 16 1:12am
In reply to @piemonte "Erythromalalgia is a condition that causes burning and redness in the hands and feet. I become..." + (show)
@piemonte

Erythromalalgia is a condition that causes burning and redness in the hands and feet. I become symptomatic when I exercise and when I sleep. Nighttime is the worst. I go to bed with cold feet and wake up a few hours later with burning red feet.

Has anyone else struggled with this condition?
Thank you.

Jump to this post

I haven't been formally diagnosed but I have many symptoms. I know that sleeping in bed is hard for me too.

REPLY
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