Originally Posted by brendaingram

Norah (I assume this is your name!),

Thank you so much for your response - you are right that I am eager for info, as you were. I'm experiencing most of what you have in the past. I am lucky that my feet are not on fire 100% of the time, only probably for 3-6 hrs every day, but they do hurt 100% of the time, going from tolerable pain in the am to intolerable every night.

The depression and removal from friends and life is so disheartening. But I just started Lyrica and already it seems to be working a bit - even at the low dose.

What scares me is sometimes my feet are so bright red and shiny, but just lately they have also gotten so cold and turn blue/purple/blotchy, and my hands turn so cold too. In my research of EM I found a side effect called Raynoud's which is the opposite of EM.

Re: EM, been having painful earlobes of all things for the last 3 weeks. It's mostly just annoying but can't sleep on either ear. Just got diagnosed with TMJ because I had 8 dental surgeries in the last year (yeah, the year from hell). Primary Dr. thought earlobe pain was from TMJ, Oral Surgeon says no, not from TMJ. But I read today about EM and how it can affect the ears and face. Lately when out in the sun my face turns bright red and tingles.

So I'm sitting here thinking I have EM but how unlikely is that? I saw an ESPN profile for Karen Conklin, who has EM and ran a marathon (OMG!). The report said that only 400 people in the US have EM.

I am type 2 diabetic and have been diagnosed with diabetic peripheral neuropathy, small and large fiber peripheral neuropathy. My neurologist thinks the additional symptoms are PN (bright red shiny feet on fire, and then the flip side (cold, blue/blotchy) and if I look at the bottom of my feet they are red and white blotches.


Does it really matter if it's PN or EM in the long run? Can you guys tell I am at some kind of breaking point right now? I'm swinging between anger and tears like a see saw. Norah, if you have additional words of wisdom, please share. Do you think your Dr. might take an out of town patient who could fly up there? We have family in Portland we need to visit.


Brenda