Reply To: Painful Nerve Sensation/Awakening – Help Please

July 10, 2012 at 7:21 pm

There is definitely pain associated with the recovery from GBS/CIDP, although the degree can vary. In my case I was able to off pain meds once I started recovery, but the pain is still there. I still get brief zings which I describe as like being slashed with a knife, but I don’t take anything for it. I am a year and a half out of the hospital and am used to it, which I take (correctly or not) as a sign of healing.

Moving a patient during the recovery phase can be painful. Even in a metropolitan area, where more such cases will be seen, some caregivers are oblivious to the problem of pain in a recovering GBS patient. You should copies of the guide for therapists available from the Foundation to give to the people who handle the patient. I am ery familiar with clueless CNAs who don’t like to be told by patients how to do things. I suggest you have a talk with the manager of the unit in which the patient is being treated to discuss the pain issues. Go armed with a couple of copies of the pamphlet so you can leave one. I think you can just print it out from this website. I hope it gets worked out!

Oh, and if you don’t already have Parry and Steinberg, get it.