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Peripheral Neuropathy vs. Erythromelalgia
Autoimmune Diseases | Last Active: Sep 7 11:43am | Replies (56)Comment receiving replies
I also have both , PN and Erythromelagia . It’s a constant daily struggle for sure. Both of these affect my feet from just below my ankles to the tips of all toes. My diagnosis is Sjogrens ( includes Raynauds both feet and hands) PN and Erythromelagia. I started with Raynauds in my late teens. The rest of it has developed over the years and I’m now 75. For the EM/PN I take Gabapentin. I also take Hydroxychloraquine, Mobic and Evoxac . I have been applying Rhofade cream to my feet three times a day for the EM. This helps for about 2-3 hrs. I also have “ cold socks” that I use when my feet are on fire.
I see a Rheumatologist at JHH. He is constantly researching for treatments for the Erythromelagia. The nights are the worst as it seems lying down causes the symptoms to flare. Showing the cold socks that I use to reduce the inflammation.
Replies to "I also have both , PN and Erythromelagia . It’s a constant daily struggle for sure...."
Hello, I would love to know where you got cold socks???Please I must find these...
I too have Raynaulds and it starts when ever there is a temperature change of just a few degrees .When I walk down the refrigerator aisle of the food store even if it is 68 degrees and my body was in a 74 degree area before that...After that I get Raynaulds my fingers turn white and get numb and cold....I then develop EM several hours later or the next day. First it starts with a bad headache then I know EM is on the way. My fingers and tops of hands get red itchy and very hot.My toes and bottom of feet get beet red and hot and burning. The headache and EM usually last about 3 to 4 days. Doctors at Stanford told me it a thermostat problem with the brain cooling down(Raynaulds) and heating up( EM) hands and feet( and some people face) Wearing sneakers and walking causes the feet to get hot and starts EM flare ups too. I stay away from MSG and salt and spicy foods, all alcohol, but still present with same problems but not as bad.My twin brother also has EM.I also have Ehlers Danlos which also is an auto immune disease... Lots of people who have one autoimmune disease also have several. I also have peripheral neuropathy in my feet and toes caused by the EM and circulation problem. I am 73 years old and thin and otherwise in good health other than these issues.
Please tell me where you got the cold socks. I live in Northern California ( SF bay area)where temperature is mild all year long. Could never live in very cold or very hot weather... ellen
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Does insurance cover Rhofade? Does the Gabapentin decrease the redness? Sometimes I wake up in the night with my face hot red? Getting in the sun always aggravates it.