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i'm not quite sure, i think i remember people talking about "coathanger pain" and there's a topic going on about pain in hands and/or feet. i think it might be caused by things that are set off by pots. anyone else able to answer this one?

hope you'll be in less pain soon notherndarleen!

take care,

corina :)

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I'm in a lot of pain as well (including my feet), so you're not alone. I have neuropathy . . . have you had that ruled out yet? I have to shut down and lay down when pain is at it's worst. I can't push through it, that only makes it worse. The clip below hits home with me. I don't know how credible the information is, but it's from the Orthostatic Intolerance/CFSupport website:


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Small fiber neuropathy usually begins in your feet. You can have pain, "hot feet", pins and needles, and it can be very hard to walk due to the severity of the pain sometimes. I had the hot feet and then pain start out of nowhere about 6 months ago. Then it started in on my hands, where sometimes it feels like a truck has run over one or both hands it hurts so badly. I was tested for small fiber neuropathy and it was positive. I'm still working on a good pain killer regimen, but am working with Lyrica so far. It hasn't done much yet, but my doctor at Mayo wants me at 450 mg/day, and I'm only at 150 mg/day. Tried 200, but got very dizzy and off-balance. Will try again after we move to our new place.

I would definitely look at small fiber neuropathy as an option, although a lot of us also suffer from chronic fatigue syndrome and fibromyalgia.

Good luck, and let us know what you find out!

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I developed burning skin pain in my hands, feet, face and mouth along with muscle pain, twitches, and very painful feet and legs as my POTS symptoms have progressed. I know that when I'm less hydrated that all of the above pains are worse, so I'm pretty convinced they are POTS related. However, I've also been diagnosed at Mayo with small fiber neuropathy, which they say has caused my POTS. I do find that if I can work as hard as possible to keep hydrated and properly medicated that the pains aren't quite as bad. However, it's always a good thing to bring up pain issues with your doctor in case something else is the culprit or if you'd benefit from prescription pain meds.

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