I had severe neck pain that went up the back of my neck to the top of the skull in the back when I was first diagnosed with GBS. I lived on aleve and tylenol, but it was really uncomfortable especially when I was hospitalized. It helped to use cold packs and to sit upright as much as possible with my neck supported. However, the really, really good news was that I went to a rehabilitation doctor the day after getting out of the hospital and he said that it was myofascial pain likely from weakness in holding my head up straining the muscles. He said there was a tense muscle band in my neck and that really pushing on this area made the pain travel up the neck. He injected the area with lidocaine and it made a world of difference. The pain did not go completely away for another month or so, but it was so much better. He said that you can repeat the injections if needed, but I only needed the one. I have not had return of this terrible pain again–sometimes if I overdo, it hurts some, but not like this. I do not know which doctor might be able to help, but I would encourage you to ask about myofascial pain and lidocaine injections to maybe rehabilitation doctors, neurologist, or pain doctors. The other group to think about include rheumatologists.
I have some “arthritis” in my neck especially high up the neck. The other thing to think about is it there is nerve compression from “degenerative” changes of arthritis. the first two cervical spine roots get feeling from the back of the neck up to the top of the skull. If a pain doctor cannot help, a neurosurgeon might could or suggest physical therapy with things to lift pressure off the nerve roots. However, again, check out the myofascial part first. (myo means muscle and fascial is the fibrous tissue that forms tendons and connections between body parts).
The procedure took only a few minutes–just putting a little needle into the muscle fibrous tissue area and injecting the lidocaine slowly. And it helped so much.
WithHope for a cure of these diseases