Order of Recovery

Hi Joanne,

I was diagnosed with CIDP March 2008 and started IVIG April 2008. I am now very functional, although far from being back to normal. My arm strength has pretty much recovered. Last year I could not raise my arms above my shoulders. My husband had to help me dress and even get my clothes from the rack in the closet. I could not hold a hairdryer over my head.

As I said my strength is back in my arms, but the end of my fingers still tingle like frost bite and my right hand and arm soemtimes throb. My legs have not regained their strength relative to my arm strength. But again, I am quite functional. Initially I lost leg strength then arm strength. So, recovery does seem to be in reverse order.

I did not start improving until I cut back on my work schedule and took naps most days. I think to recover one has to get plenty of rest. I took naps for about three months. I started feeling like I was on the road to recovery after 7-8 months of IVIG.

I found that the use of my arms and hands allowed me to feel more in control of my life. I hope to regain all or most of the strength in my legs, but I seem to be able to work around that. I try to navigate on smooth surfaces and avoid stairs when possible. Most people can not tell I have anything wrong.

I hope this gives you a little hope. I know I had thoght after three months I would be well. But, it is taking a little longer.

I wish you a quick recovery.

Donna M

Hi Joanne! My fingertips on my arms still get the numb feeling but my arms strength is getting better. My legs are finally starting to improve some but still slow healing there. My feet and toes are what bothers me more now. Last year I was like Donna! My whole body burnt like fire. And I was very weak. I had to do nothing but rest my brains out for several months and still have to rest but am getting more active than I was last year.
Some strength now in my legs but my feet and toes are completely dead feeling. Fingertips are dead feeling. Maybe one day I will feel them again! I hope! Oh! Listen to your body! When it says NO! You rest and do what it tells you! If not you will see it get worse! Lessons learned many times over! Hugs
Linda H

Joanne,

Think of recovery and damage this way. You already know you are having a demyelinating disease etc. So I won’t go into that stuff, but about your body and why it does what it does.

Each receptor/muscle that has a nervous system connection has its own individual pathway to the brain. It is like you having your own highway to work. Nobody else can drive on the road, it is only for you. That is the way nerves go. So it makes sense that toes and fingers have the most extensive damage, they have the longest roads !! There is more myelin exposure on the nerves that feed the sensation to your toes, than the nerves that feed sensation to your thigh, or your upper arms, etc. Because there is more exposure, the opportunity for damage is greater, and the time for recovery is longer.

I hope this helps
Dick S