I have been struggling for the past year .
Started with feeling like I have a hair around big toe.
Progressed to feelings of freezing or burning on tops of feet.
Saw a rheum who said nothing wrong after tons of blood work.
Saw a neurologist multiple times who tested for small fiber neuropathy
And general neuropathy. He also did brain and spine MRI.
All normal. Finally, found elevated b6!
Stopped high b6 diet and supps that contain b6.
I also have a history of Lyme from 2008.
Lyme specialist thinks my symptoms could be from Lyme so she has me on
A protocol. While on that antibiotic protocol, my feet have been flaring bright red on and off. Could this be ER?
Do Some ER people get the freezing sensations as well?
Bright red toes that are not swollen.
Flares happen at night so far.
On neurontin and amitryptoline but not sure it helps much.
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Sounds like you have both EM and Raynauds. If being on your feet a lot or getting hot triggers redness and burning or stinging in your feet, it is probably EM. When my hands get cold, the fingertips turn white, then blue and painful. These symptoms are indicative of Raynauds. I have Erythromelalgia (EM) in my feet, knees, hands, right arm, right shoulder, cheeks & ears. I became symptomatic last summer, & was diagnosed then. This year I was diagnosed with Raynauds in my hands, too.
The go-to drug combo for many people with EM is Lyrica and Cymbalta. I started these drugs in November and am doing a lot better. I don’t know if the drugs have helped me or if I am managing my EM better by staying off my feet more, elevating them and keeping cool.
Hope this helps. Good luck, Amy.