I,ve had CFIDS for 17 years. Have also had progressing neck issues this whole time. I've learned to manage my triggers for CFIDS and am doing well on that front.( I believe, from the years of managing the CFS that a lot of the CFS is caused from the c spine issues.) I've had to curtail most exercise and activities, that I enjoy that place any stress on C spine. No biking, movie theaters(any activity that requires looking up), swimming except for back stroke or side stroke. Lately I have had increased brain fog,( worse ever) tingling, burning including whole scalp area, neck and down back. If I had not already experienced some of this in the past I would have gone to the ER with this last episode.
I just made an appoint to discuss having full workup with my GP. Will be asking for major center, probably Boston. I've thought, what if I need some other surgery and the position for intubation causes some permanent damage? The time has come to find out just where I'm at, and look at most responsible choices. I have 2 young grandchildren with one on the way, and so much want to be a "whole" for them.
Have any of you had similar experiences and have any suggestions or helps for working with the medical community?
Kim- "while I breathe I hope"