Hi all! My name is Connie...aka Lilbit61. So glad I found this site...thank you to whoever set it up and who all that share!
.I am still trying to find a Dr that can help me. I do have EM! I have fibromyalgia and neck pain and IC and now periphal neuropathy and Erythromelalgia. I am smack dab in the middle of USA. My primary Dr sent me to a neurologist who tried me on a 3 meds...my primary dr said he dosed wrong so changed it. Now he wont do anything but tell me to "call Mayo Clinic" in Minnesota. I don't have the $$ and insurance wont cover that. So I asked him to call the University of Nebraska Medical Clinic in Omaha....he told me he doesn't know any neurologists...I would have to call myself and be my own advocate I guess. Anyone in the US that is in the Midwest???????
Also thanks for the discussions and posts..I haven't been on much...it seems everything I suggest to the dr I get shot down. I have tried gabapentin, lyrica...they all zonk me out even giving them enough time to adjust to them. The problem is I am already on pain meds for my other issues and a lot of the nerve pain meds interact with them. So I have had some symptoms that we did not know were related several years ago...sores on my feet, knuckles, ear..red ones. Then 2 yrs ago I came back from a trip and had a high fever and they kept searching and found hepatitis(I had many many surgeries in the early 1980's before they tested for this and had many transfusions) I am now cured of that. So I always have multiple stuff going on. 4 months ago the red feet that were just a little bit sore....FLARED! Its been really awful to be trapped in the house with only mornings that I can do a few things. then in bed with feet up. Used many of your suggestions for some relief - thanks for that. Please friend me if you would like to. Can someone tell me when I click on "invite friends" it asks for email addresses? Where do I find those? Do people meet up in chat? I have never seen anyone in there?
Congrats to those of you that are finding some relief... and to others...hang in there. Its ruff.