Reply To: recovery experience

March 16, 2017 at 9:41 pm

I’m right handed. Running, never did it before I became sick ; )

I’m walking without a cane and back to work where I’m on feet for 8 hours. It still wears me out after a day of work, but I’ve been feeling stronger as the weeks go on. I’d say I’m 75-80% back to normal, but that last 20% is what returns one to “normal”…

I think GBS/CIDP just weakens the muscles so, the recovery takes time. Add into the equation the time it takes to rebuild the myelin and of course, the possibility that some nerves were damaged in the process.

My neurologist estimates it might take 5 to 6 more months to see where recovery takes me. At that point, we’ll see if there was actual damage to the nerves themselves.

And, I feel the same way. As I fatigue, I worry that the immune system is once again attacking the nerves. But my measuring stick is this.

-can I still feel hot/cold
-can I pinch myself and feel it
-can I feel texture
-can I feel things with my toes

When I answer yes to these things, it abates my fears of the return of the disease.

So far, my ability to sense and feel is there and getting more sensitive each day. At this point, I really chalk it up to muscle fatigue and just thank God the numbness and motor control issues aren’t coming back! : )

I’ve been pacing myself which does help. Definitely too much exertion at once sets us back.

My goal though is to be back on the golf course by May, even if it means only hitting the ball 150 yards of the tee with a 7 wood.