Since the early ‘80s, I‘ve had symptoms of peripheral neuropathy, specifically tingling spreading from my hands and feet. EM showed up in 2008 (at age 60) while walking around Rome for 10 days. (At least it was a fabulous trip!)
I always have swelling in my hands and feet, which gets worse when they are hot. There are a couple deep cracks on each of my feet. I have to ration the amount of time I spend using my hands and feet. I try to minimize contact with water. For several months I got very little sleep. When I changed my meds to 100 mg amitriptyline and 5 mg zolpidem tartrate (Ambien), I was able to stay in bed with only occasional applications of freezer-chilled “Hot Pockets.” I mention “Hot Pockets” because I have found them to be the gentlest coolant (aside from fans). They are cloth beanbags designed to put around your shoulders. I found mine at a drug store. You need several because they don’t keep their cool for long (pun intended). When my feet get super-heated, though, the only thing that cools them down is a plastic cold pack from the freezer—with an old kitchen towel between the cold pack and my skin. (EDITOR’S NOTE: The use of ice packs is not recommended.)
Skin care is also a problem for me since getting EM. I’ve found a routine that seems to work. After a quick lukewarm shower, I use a hypoallergenic lotion on my body (Aveeno with colloidal oatmeal). Eucerin cream works well on my feet, after which I put on clean cotton socks. I keep the socks on until my feet start to “complain” (the tingling that precedes the heating up). For body soap and shampoo, I use Johnson’s natural head-to-toe foaming baby wash. I’ve found the baby section is a good place to shop for gentle products.
(Jane lives in Oceanside, Calif. USA)