Causes of CIDP…

Anonymous
January 8, 2010 at 12:31 am

I agree with both Flossie & Patty as to what causes CIDP, or most illnesses for that matter. When I came down with CIDP almost 8 years ago (a very severe case, leaving me with some severe residuals), I was at first told it was caused by walking pneumonia that I had battled all winter. I knew I had a cough, the result of a cold I picked up from a student 4 months before. But many people in MN battle colds all winter & never come down with such a severe illness as CIDP. Then I decided it was just “bad luck” & that since I was physically in shape, slept well, ate well, etc. that there was nothing I could have done to prevent it. I still believe that…

But when visiting my dermatologist a few years ago, he mentioned that he had 6 other patients with CIDP, but none as severe as mine. I live in a small town, so I was surprised to hear this. Then he asked me if I had had ecsema as a child; now I had severe ecsema until the age of 21 from birth. Then he asked if I had had allergies. Again I had severe allergies from birth to my late 20s. Both autoimmune, CIDP autoimmune. I now believe that I was born with the prediposition to another autoimmune illness, & all I needed was a trigger to come down with this, which happened to be a bad cold to set off my immune system.

Maybe it was the timing of the cold, maybe it was just all bad luck. But I am way past wondering how I got it, still learning to deal with it, however. I try not to let CIDP dominate my life, try as hard as I can to still enjoy the simple things I can still do. I can walk again with AFOs & a cane. I do take a transport chair when we travel by airplane. We try to spend as much time in the summer at our isolated rustic cabin. I might only be able to get down to the dock twice a day, but swim, fish & boat ride while I am down there. I had to give up skiing, skating & tennis, but we still snowmobile as much as we can. The hardest part is still the fatigue, I find I must sleep almost 12 hours a day to enjoy myself & feel halfway normal.

So, it is good to research the illness, get the best treatments available, etc. But to let CIDP dominate every aspect of one’s life is a waste of your time. Life is short, & I hope someday we will all learn the answers to our questions. In the meantime, live life & enjoy whatever you are able to do! This weekend we will travel to our daughter’s home 3 hours away to help put my soon to be granddaughter’s nursery together. I can sit while I iron the valances, the crib bedskirt & quilt to hang. Our son is gettin another chocolate lab this month, we will help out with the puppy as much as we can. Then we will leave this arctic tundra & spend 2 months in Naples, Florida. I cannot play tennis or golf( never did do that one, anyways), but I can swim in the pool, enjoy the ocean & go to a few MN Twins games. We will fly & rent a car again, as I decided that 4 days of driving 8 hours each day was too much for me!
Pam