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Anyone out there with Erythromelalgia?

Autoimmune Diseases | Last Active: 18 hours ago | Replies (287)

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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.

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Replies to "The pain is much worse if I stand for very long.. I have to keep my..."

Hello @hotfooted, welcome to Mayo Clinic Connect.

@kanaazpereira posted the following information 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?

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?

Hi hotfoot, I too have erythromelelagia it has changed my life actually turned it upside down no standing for over 20 minutes, no hot showers, no swimming I. warm pools, I spend most of my days with my feet propped up fans going day and night and sometimes run cold water in the tub and soak my feet until the burning stops. I take gabapentin, cymbalta and propananol 3x daily, if I miss one does of propranolol I'm up in the middle of the night soaking my feet. Horrible disease.