Tara, you are the first person that has described the type of pain i have and have had, especiallly the pain that hits the base of the neck and radiates up the back of the head. The Dr.s never knew why I had that pain, and still do after 11 yrs. It comes and goes now, but the back of my head is hypersensitive to touch, like if I sit in a chair and my head touches the back of the chair, my head starts burning and then I feel nausous. I can’t lay down and watch tv or my head starts burning, it’s insane. I have to lay very level when I go to bed, my pillow has to be very thin so my neck isn’t angled in anyway.
I do not take any pain meds, probably should. I am afraid of them as I get physically sick. Now I am having more problems with leg pains (due to walking with drop foot in both feet). The winter months my feet and hands burn constantly from being so cold. I live in Michigan so it’s cold here in the winter.
I want to start taking neurontin, but am afraid of side effects, I would like to hear how it helps other people. I also heard a lot of people gain lots of weight from neurontin.
I was originally diag. with GBS then after 2 relapses it was changed to CIDP, although I have never hand another relapse in 11 yrs. , but was left with a lot of nerve damage.
Someone also mentioned pain that is similar to migranes, I have that and I feel it is leftover from when the original attack hit my eyes, I was left with double vision for about 10 months, so it’s possible the nerves didn’t heal properly as my pupils still dialate differently.
This is interesting that Dr.s still say there is no pain involved, that’s what they told me as well.