Dr. says "Can't help you". Maybe someone here can?

Hi all,

Thanks to everyone who posts here! I’ve learned so much in the past couple of weeks. In particular, seeing that other people have the unholy trinity of EM, chilblains, and Raynaud’s has been helpful. Here’s my story:

Started getting atypical Raynaud’s in my early 20s. Like others have mentioned here, it’s most likely to be set off by moving from cold to hot (like getting into the shower in winter), which is not how Raynaud’s usually works.

In 2010, got my first chilblains, which have since gotten worse every year. Sometimes it’s hard to walk. Once it killed a toenail. Only thing that helps is raw potato. Seriously! If you’ve got chilblains, rub raw potato on them (gently). Instant itch relief and it even helps with the swelling.

Spring 2018, EM arrived. I actually thought it was chilblains that wouldn’t heal until I realized it didn’t itch. Went away over the summer and came back that fall with a vengeance, with the flares lasting most of a day. For me, the absolute worst part is not being able to exercise, which was guaranteed to start a bad flare. Not exercising just destroys me emotionally and mentally.

For me, the EM isn’t exactly painful, for which I’m thankful. It’s more like pre-pain. Like when you open a really hot oven, and your brain takes over and moves you backwards. It’s like that. Same kind of sense of heat and non-negotiable brain message that the shoes and socks have to come off! And my feet turn red, and my toes swell, and it’s miserable and sometimes hard to walk, and I keep getting that non-negotiable brain message, but can’t do anything about it, if that makes sense.

I saw a neurologist who agreed that EM was likely and put me on carbamazepine. (That neurologist was flummoxed by the combo with Raynaud’s and chilblains, and shooed me away after the third visit.) I wasn’t having active flares right at the time, so it’s hard to know if the carbamazepine was working on the EM, but I did learn that I probably have had undiagnosed ADD all my life. Did you know you can think ONE thought at a time? :smile: I had no idea. It was revelatory. Some digging revealed that carbamazepine is used to treat ADD that doesn’t respond well to Ritalin and the like. Sadly, I’m allergic to it.

More digging to learn about how carbamazepine works—it basically chills out your sodium channels. More digging to see what nutrients are involved in the same process, and now I am taking Omega 3 every day.

My brain hamsters, as I like to call them, are much calmer since taking the Omega 3 supplements. This summer I have had only mild flares, even when exercising (in sandals), so I am cautiously optimistic. For me, winter is the real test.

EDIT: Jinxed myself. Had two moderate flares today—one from walking in the sun in open-toed sandals (I should know better) and one from exercising, which made me want to cry.

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Welcome, jenevieve! We’re really glad that that you found us, but sorry that you’ve been blessed with the “unholy trinity”. Sorry, it’s no laughing matter, but your way with words made me smile.

What a great account you’ve shared with us! I’m sure there will be others who can relate to the many trials that you go through so much of the time. Your doctor says “Sorry, can’t help you.” ? I think we may have a few people here who can. I’m going to change your subject line and see whether a few of the great peeps of this community can give you a hand.

Seenie from ModSupport

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