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.

@drolker

Recently my rheumatologist prescribed a cream for my feet for treatment of Erythromelagia. The cream is made at a Compounding Pharmacy. It is not covered by any insurance. The cream contains Amytriptoline, Ketamine and Lidocaine.
I’ve used the cream about 6 weeks , it took a while but it is helping . At least the severe swelling has gone down and I can wear some coffee my shoes again.

Jump to this post

Sorry for the typo error. I meant to say I can wear some of my shoes now that the swelling has gone
down some

REPLY

I would love to see a thread dedicated to this. I have not been diagnosed because I have not been able to get into the doctor while a flare was still active but my symptoms match everything I've read. I have psoriasis as well.

REPLY
@susanop

I would love to see a thread dedicated to this. I have not been diagnosed because I have not been able to get into the doctor while a flare was still active but my symptoms match everything I've read. I have psoriasis as well.

Jump to this post

Take pictures of your flares, and document all your symptoms. I have kept a photo-log since the beginning. It has been invaluable when discussing, or proving, what you are referring to.
Alternatively, I have made it a point to drive myself 50 miles to the closest walk-in clinic while the flares are happening. As soon as the attending physician enters the room, pull off your socks and show them. There seems to be a hesitancy these days towards “hands on” . But if they won’t look....then you have to show.

REPLY

I know that it is tempting to do, and give immediate relieve. But cold water immersion is not recommended because of rebound circulation issues and tissue breakdown. It may actually make the condition worsen over time.

REPLY
@wiedd

Take pictures of your flares, and document all your symptoms. I have kept a photo-log since the beginning. It has been invaluable when discussing, or proving, what you are referring to.
Alternatively, I have made it a point to drive myself 50 miles to the closest walk-in clinic while the flares are happening. As soon as the attending physician enters the room, pull off your socks and show them. There seems to be a hesitancy these days towards “hands on” . But if they won’t look....then you have to show.

Jump to this post

Thanks for this -- but what kind.of a walk in clinic? I've been to see a number of podiatrists and general physicians as well as my rheumatologist and none of them ever steered me toward EM - it's as if it wasn't even an option that they considered. But whenever its hot out and I'm walking a lot I develop these incredibly painful hot inflammatory red areas on the sides of my heels. Very painful -- and I'm in good shape: 5’7” and 124 pounds and a runner who weight trains and eats a plant based diet. I do think it's gotten better as I've phased out animal.products.

REPLY
@wiedd

Take pictures of your flares, and document all your symptoms. I have kept a photo-log since the beginning. It has been invaluable when discussing, or proving, what you are referring to.
Alternatively, I have made it a point to drive myself 50 miles to the closest walk-in clinic while the flares are happening. As soon as the attending physician enters the room, pull off your socks and show them. There seems to be a hesitancy these days towards “hands on” . But if they won’t look....then you have to show.

Jump to this post

Here, in Canada, we have what they call “minor emergency” walk-in clinics as an alternative to going for a hospital visit. Takes a load off the hospitals.
You need no appointment, first come first served. But the details of your visit are still logged into your medical records that your family doctor can see,

REPLY
@susanop

Thanks for this -- but what kind.of a walk in clinic? I've been to see a number of podiatrists and general physicians as well as my rheumatologist and none of them ever steered me toward EM - it's as if it wasn't even an option that they considered. But whenever its hot out and I'm walking a lot I develop these incredibly painful hot inflammatory red areas on the sides of my heels. Very painful -- and I'm in good shape: 5’7” and 124 pounds and a runner who weight trains and eats a plant based diet. I do think it's gotten better as I've phased out animal.products.

Jump to this post

@susanop. Do you have an Urgent Care in your area? Most of these are connected to a hospital. Hope you can find some help

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

I had bad side effect from gabapentin. CBC oil is helpful. I also take a proprietary blend of B vitamins and Alpha Lipoic Acid. I sleep with a fan blowing on my feet, and have one under my desk too! Going outside on hot days is so painful, sometimes the only relief is to soak in cold water for a few minutes.

REPLY
@susanop

I would love to see a thread dedicated to this. I have not been diagnosed because I have not been able to get into the doctor while a flare was still active but my symptoms match everything I've read. I have psoriasis as well.

Jump to this post

I suffered for years because every doctor I went to about my symptoms couldn't "see" the flareups. Taking photos helps. I can't wear socks or close-toed shoes, even in winter unless it's freezing and there's snow on the ground! Sometimes I'd like to just walk in the snow!

REPLY
@becsbuddy

@susanop. Do you have an Urgent Care in your area? Most of these are connected to a hospital. Hope you can find some help

Jump to this post

@susanop Were you able to find an Urgent Care Clinic? There should be a few in your area.
Have you found any relief?

REPLY
Please sign in or register to post a reply.