Paulg

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  • November 5, 2017 at 3:04 pm

    Acceptance76
    I too had the initial infusions and the every three weeks for 3 years as well as infusions of prednisone. It is a long, tough experience. The mental struggle with all of it is equally as challenging. After 7 years I am ok. I have strength but no endurance. I am about 70% thru the acceptance stage. Happiness is creeping back into my life and will continue to do so as I learn to accept what has happened to me. I tell you this because I want you to know the sooner you can accept this crap that has been bestowed upon you, the sooner you will begin to enjoy your life in different ways possibly, than you were used to. Don’t give up and hopefully you have the love and support of family and people around you to lean on. Take care and ask anything you need to ask. I am here to share whatever may help you.

    October 23, 2017 at 5:24 pm

    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.