Living with Guillain-Barre Syndrome

I was first sruck with GB 7 years ago and while the intial onset was terrifying as most who have suffered have know. The unexpected flare ups have been worse on me emotionally.

When I first became sick the symptoms puzzled the doctors. I went from diagnoses to diagnoses. The pain and weakness could not be explained for a long time and I became frustrated with my condition. After many attempts at controlling the pain I got into the ritual of being prescribed narcotic based medicine. (Duragesic patches)

About two years ago I felt that this course of action was causing to many additional health problems and emotional problems and slowly I worked my way off of them. I have stayed off these medications enduring small flare ups and knowing my limitations.

Over the past two months I have been pushing those limits and last Sunday i was taken into emergency do to extreme pain and muscle loss (strength). I find myself in great fear because last time the unknown was bad enough. This time I know what to expect and I have to deal with this.

I hope some out there who have had reocurring bouts might have some insight and ways they have delt with this.

My wife say me go through a lot but it seems like unless you have personally experienced this syndrome trying to describe it is difficult. I do not mean they do not have empathy but again I get frustrated trying to get them to understand what I go through. They also get frustrated and I can almost see it in their eyes with a question like “won’t a shot from the doctor take care of it?”

Am I alone in this feelin? Please let me know.

Thanx