I have just found your group on the web. After what I thought was a pulled muscle in my back last August and rapid decline in health, I was diagnosed with CIDP in January. By this time I had seen 5 doctors and no one was sure what was going on. I fell every time I tried to step up or down a step and was shuffling on a walker. I was put in the hospital for 10 days with steroids and plasma exchange. Still very sick for weeks after that. Finally about 6 weeks later the pain begin to subside and with therapy I was able to walk better on the walker. I know have IVIG for 48 hrs every 8 weeks. I take trileptal, robaxin, alpha lipoic acid and evening primrose oil. Today my wrist started hurting like I had overused the muscles in it and is now swollen and very painful. I haven’t done anything out of the usual and it is not my writing hand. Has this happened to anyone else? Any advice about CIDP would be welcomed. I have a great neurologist but she really hasn’t explained a lot to me and she is 2 hours away. Thanks!
Is it the wrist that the IVIG is on?
This time it is the wrist that I had the IVIG on a month ago. Last time it was the other wrist and was right before the IVIG treatment. I wrapped it this time and kept ice on and off for a day, it was must better yesterday and back to normal today. Also ran a low grade fever this time. Primary doctor just said part of CIDP. I see the neuro next week and have it on my list of questions.
Im having the same problems myself.Mine has gotten so bad i have had to go to using wrists braces on both hands.I have absolutely no grip and over the weekend while cooking for my family reunion i have broken half the dishes in the kitchen and even broken my waffle maker by dropping it.My neuro has always told me its worse in the summer time for nerve impulses to go from the brain to the nerve centers and its getting time for my infusions sooo i have a feeling its to do with that.
Hope you get to feeling better soon...big understanding hugs
I had another flair up last week and it was still swollen by the time I checked in for IVIG. Doctor did extra blood tests to rule out RA and gout. Said all the bloodworm looked great and it was just part of CIDP. I’ve just learned to keep my wrist braces and ace bandages handy.
Right now I’m dealing with major neuropathy pain in the feet. The 95+ degree weather isn’t helping at all. I’m just really washed out from the heat and the treatment.
Sooo glad im not the only one...thanks for sharing Jan.