I've been having new symptoms, that don't quite all fit in the CIDP category, and visited a doctor yesterday about them. I'm going to have all sorts of examinations, and I guess it's gonna take some time to figure out what else is wrong with me. But I was searching the web about my symptoms, and was absolutely shocked how many are listed in the CFS-website. Already, I'm pretty sure I have that syndrome, and I immediately started wondering is it very common among us?
It would be very hard for me to try describe the symptoms I have in English, and there are so many, that atm I'm gonna leave them from this post.
Please, tell me if you have any knowledge about this CFS appearing on CIDP/GBS patients together at some point of life?
I read an excellent explanation for this fatigue in Drew's CIDP Blog. It is called Central Neurological Fatigue and/or Peripheral Fatigue. There is abundant and well documented information regarding the reasons for what you describe.
It was also explained to me that our efforts are sometimes 100 fold, depending on the degree of damage, for doing the exact same thing once before we got sick. Even if you bring it down to 10x the effort that puts unloading the dishwasher or getting dressed into perspective. I would feel so frustrated about the double whammy of dropping something because of weakness in my hands. Most people just pick it up but the amount of energy we need to pick it up is times many fold. It's easy to get discouraged to try and do anything other than necessity which in turn can make our life kind of boring. So I make a point of spending some of my energy on doing fun and interesting things that keep me motivated to do the things I must. Everyone with CIDP should be aware of energy conservation as well. I think most of us figure out how to conserve whether or not we learn about it but there could be a lot of good pointers to improve the quality of life at whatever level of need we experience.
I read an excellent explanation for this fatigue in Drew's CIDP Blog. It is called Central Neurological Fatigue and/or Peripheral Fatigue. There is abundant and well documented information regarding the reasons for what you describe.
It was also explained to me that our efforts are sometimes 100 fold, depending on the degree of damage, for doing the exact same thing once before we got sick. Even if you bring it down to 10x the effort that puts unloading the dishwasher or getting dressed into perspective. I would feel so frustrated about the double whammy of dropping something because of weakness in my hands. Most people just pick it up but the amount of energy we need to pick it up is times many fold. It's easy to get discouraged to try and do anything other than necessity which in turn can make our life kind of boring. So I make a point of spending some of my energy on doing fun and interesting things that keep me motivated to do the things I must. Everyone with CIDP should be aware of energy conservation as well. I think most of us figure out how to conserve whether or not we learn about it but there could be a lot of good pointers to improve the quality of life at whatever level of need we experience.
To me the worst thing about CIDP is the overwhelming exhaustion. I also think you were bang on with your explanation mades. My quality of life has been effected more by the exhaustion rather than the pain and weakness. Let us hope for a pain free and restful day.
To me the worst thing about CIDP is the overwhelming exhaustion. I also think you were bang on with your explanation mades. My quality of life has been effected more by the exhaustion rather than the pain and weakness. Let us hope for a pain free and restful day.