AnonymousJuly 31, 2011 at 11:29 am
I have been on the forum for almost 9 years now, had over 1500 posts on the old forum before it crashed. For years now I have come on the forum mostly to help those suffering with the worst cases of CIDP; the kind of CIDP that I have had to deal with. After almost 2 1/2 years strictly in a power chair with virtually no use of my hands, cytoxan infusions finally arrested my CIDP back in 2003 & in 2004 I began to walk again with AFOs & use a cane outdoors. Also, must still use a wheelchairfor long distances such as airports or extensive shopping, but I am not complaining about that.
For the most part life is good, bu I still have to deal with extreme fatigue. I never seem to be able to get enough sleep, even if I do I still feel tired. Since it has been 9 1/2 years since I was struck wth CIDP it has gotten hard to remember what it was like to feel “normal.” But watching others around me (including my 86 year old mother,) make me realize just how bad this fatigue really is. I get so tired of pretending that I am OK, & trying to act normal.What do some of you with this fatigue do or take to try to alleviate this feeling of tiredness so much or all of the time? Any suggestions would be appreciated.
AnonymousJuly 31, 2011 at 7:16 pm
Yes it is frustrating feeling tired all the time. I am ready for bed by 7p.m. most nights. Sometimes I can take a nap mid afternoon and other times I just try and suck it up!
I don’t get nearly the amount of stuff done in a day, sometimes even thinking about tackling a job makes me tired and I can’t do it.
Try to balance it out and remember life is short just make the best of it.
July 31, 2011 at 8:25 pm
yes the fatigue that comes with this is horrible—–I think its to do with the existing nerves attempting to do the work for the damaged nerves, they are overworked therefore causing exhaustion. Then of coarse the body constantly fighting the inflammation if the cidp is still active.
one day at a time—-be thankful for the things you were able to do each day—-do something you enjoy each day—–and most of the other not so fun things will still be there tomorrow!!! but–yes it is soooo discouraging, things that used to be so easy and natural now being so tiresome and difficult. Lori
AnonymousJuly 31, 2011 at 10:34 pm
I don’t have any good solutions, but I’ll tell you what I do.
I drink a good deal of coffee in the morning to be able to function at all. I take naps whenever I can, on bad days it is 3-4 times a day. That is a balancing act, because I still need to be able to sleep at night.
I do what I can, and then I rest. Once I feel as recovered as I am going to get, I get up and do a little more. I repeat that cycle as many times as I can, until I feel I am falling apart, and then I am done for the day. That method kept me able to do things, even though it was a big struggle, for a long time.
Key to doing this is to really listen to your body and how it is feeling and to “respect” the fatigue. If I try to push through it, I just end up making myself worse, both that day, and for many afterwards. It took me a very long time to learn not to push it, type-A personality is my nature.
Let go of things that you don’t really have to do, be willing to get help from family, and friends where you can, and hire people if possible.
Hope some of that helps. Sorry I don’t have any better answers. I consider the fatigue the worst symptom of the illness that I have to deal with.
AnonymousAugust 3, 2011 at 10:44 am
Are you taking supplements? I have found that taking coq10, vitamin d and particularly vitamin b12 help. I have heard people on here talk about B12 shots? Would that be an option for you?
I went to the Chronic Fatigue Clinic in Miami and they recommend the supplement regimen I mentioned as well as 4000 mg a day of fish oil too. It takes about 3-6 months of being on the supplements daily to feel some results. Maybe you could consider a trip down there. I am waiting for results of blood work for additional recommendations. The supplements have definitely helped with the fatigue. Maybe consider a naturopath. Mine put me on a Gluten-free/dairy free diet and it has helped tremendously across the board, more than any med that I have taken. Good luck!
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