Reply To: CIDP Progess and retrosepction (Long)
Hello everyone. I am reaching out to fellow CIDP sufferers because of my condition and curiosity. I have been off ivig for about 3 years now. I took treatments every three weeks for about 3 years prior to that. I believe I had CIDP about 4 years prior to it flaring up to a point that I lost all my strength and sought help. Anyway, I currently suffer from a lot of fatigue even though I have been off treatment for a few years. I have to sleep at least 10 hours per day with a lot more than that on the weekends. If I am on my feet for too long, I too have a lot of pain and find it difficult to walk, or should I say, want to walk. I have somewhat learned to deal with my semi-handicap condition but the guilt and emasculation of this disease is quite cumbersome for me to get over. I spent my entire life as an outdoorsman, a home builder and many other things that required physical activity. Now, I am a slug who has to sit and sleep a lot. I guess I don’t really see that my condition will continue to improve but still very hopeful. Have any of you continued to suffer with the damage that was caused when the disease was active? Is there hope for more improvement? Doctors won’t seem to tell me anything.