Anyone out there with Erythromelalgia?

Posted by txbren @txbren, Aug 27, 2018

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

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

Does the Mayo Clinic in Az have a specialist for this?

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Hello @mimafour and welcome to Mayo Clinic Connect. Here is some information on care for erythromelalgia at Mayo Clinic as requested.

-Erythromelalgia Clinic in Minnesota:
https://www.mayoclinic.org/departments-centers/erythromelalgia-clinic-in-minnesota/overview/ovc-20421220

Are you, or someone close to you, suffering?

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@amandajro

Hello @mimafour and welcome to Mayo Clinic Connect. Here is some information on care for erythromelalgia at Mayo Clinic as requested.

-Erythromelalgia Clinic in Minnesota:
https://www.mayoclinic.org/departments-centers/erythromelalgia-clinic-in-minnesota/overview/ovc-20421220

Are you, or someone close to you, suffering?

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Yes!!

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In reply to @mimafour "Yes!!" + (show)
@mimafour

She was to he seen in Az Mayo but was to sick to go last week. And we did not know this EM could be her diagnosis. She falls in the category though. Would we need to make a separate appointment in Minnesota or is she in the system between all Mayo Clinic’s?

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@hotfooted

Recently I tried using frozen packs to cool my burning feet.. It helps and is easier than soaking in cold water or sitting in the shower spraying them in the middle of the night.. Hope this helps you...

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What helps me at nights is Asper cream with 4% Lidocaine. I rub it on the top of my toes and foot and bottom. Sometimes it lasts all night and sometimes I have to repeat it. Good luck./

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Hello fellow burning feet and hands sufferers. Just in the past month and a half, after having looked at capsaicin in past year or more but being afraid to try it, I am ELATED to report that using a Walgreens 0.25% capsaicin patch has helped more than ANYTHING I have tried since this nightmare began in 2015. I do still have to be in a cool environment but even in less cool situations the pain is not as severe as it can be.
I was afraid to try it because it is so counterintuitive as capsaicin is the property in hot peppers that give it the heat and burns your tongue when eating spicy food and I thought why would I put something on my already burning feet that has burning as it's main component? All I have to say is it works!

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I do not work for Walgreens/Capsaicin company/trade the stock. Only investment is the $4.99 cost of the 3 large sheets that can been cut to place on toes or heels, or hands, wherever needed

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@capsaicin

Hello fellow burning feet and hands sufferers. Just in the past month and a half, after having looked at capsaicin in past year or more but being afraid to try it, I am ELATED to report that using a Walgreens 0.25% capsaicin patch has helped more than ANYTHING I have tried since this nightmare began in 2015. I do still have to be in a cool environment but even in less cool situations the pain is not as severe as it can be.
I was afraid to try it because it is so counterintuitive as capsaicin is the property in hot peppers that give it the heat and burns your tongue when eating spicy food and I thought why would I put something on my already burning feet that has burning as it's main component? All I have to say is it works!

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Hello @capsaicin, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Thanks for sharing what helps with your pain.

It sounds like you have dealing with the Erythromelalgia pain for a long time. Do you mind sharing what you were searching for when you found Connect?

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@johnbishop

Hello @capsaicin, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Thanks for sharing what helps with your pain.

It sounds like you have dealing with the Erythromelalgia pain for a long time. Do you mind sharing what you were searching for when you found Connect?

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I was searching for the connection between the COVID-19 vaccine and neurological issues like peripheral neuropathy, Erythromelagia, tinnitus, autoimmunity...you get where I am going. Wanted the find out who has experienced negative things to the point of regretting their decision to take it.

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@capsaicin

I was searching for the connection between the COVID-19 vaccine and neurological issues like peripheral neuropathy, Erythromelagia, tinnitus, autoimmunity...you get where I am going. Wanted the find out who has experienced negative things to the point of regretting their decision to take it.

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Well, I can add that I have PMR which is in remission, degenerative arthritis, high blood pressure, lymphedema, small fiber PN and have had both Pfizer vaccines, the new Shingrix vaccine and only minor reactions similar to what most people report.

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