AnonymousDecember 14, 2009 at 10:16 am
[I]Suggestions, anyone? I’ve been going through a period where the feet and hands have been unusually quiet ( knock on wood ), but the shins are still numb, of course, and the quads are still burning.
Now, however, the fatigue is becoming a definite problem. Thank heaven I’m not having to work! It really doesn’t matter what time I go to bed, I am going to sleep 11 hours — period. Then it’s as though my legs are completely separate appendages and I must use strong willpower to get them to move.
If I must rise before I get those hours, I am so overwhelmed by mid-afternoon that I’ve even felt as if I were falling asleep while still standing. So if the 11 hours aren’t done at night, there is make-up nap time in the afternoon.
This is so 😡 annoying!!
I don’t turn on the TV until evening. So I end up with only a half day ( more or less ) to do anything. Sleep, shower, feed animals, etc. in what remains of morning. Watch some TV in the evening. And never quite get everything done in the afternoon that I’d like to accomplish.
I’m certainly doing so very much better than most of you all, but I guess I just had to bellyache a bit. Sorry ’bout that! 😉 [/I]
AnonymousDecember 14, 2009 at 11:24 am
Listen to your body…if you are tired sleep!
If you find the afternoon nap helps take it.
Set an alarm if you only want to sleep for an hour or two.
You might find you have more energy after having a nap.
I need to rest often and also sleep 11-13 hours per night!
Rhonda from Canada
AnonymousDecember 14, 2009 at 12:56 pm
I have MS and hubby has CIDP. We both are on Alertec for fatigue. Helps quite a bit. I agree about listening to your body, but I found in the beginning with my MS fatigue that I was spending far too much time resting, and then it seemed to potentiate the fatigue i.e. you get a little bed bound and then the muscles just aren’t used enough and then you are more tired–a big viscious circle. We do the short nap routine and never push to the point of fatigue. Short rests frequently when we are doing horse chores etc. The Alertec keeps one from sinking into that vegatative state–which I found happened with the MS, and then hubby experienced the same thing with his CIDP. He is still battling terrible fatigue even with the Alertec, but at least now he has enough energy to participate in our lives which wasn’t happening before the Alertec. But like Rhonda he needs a good night’s sleep or he can’t function the next day.
December 14, 2009 at 11:46 pm
Hi Rocky 36,
I don’t even have cidp, I am the mom of a son and I “bellyache” on here all of the time. I don’t think you are bellyaching, you are just having a bad day and need a place where people will listen and understand. I hope things get better!!
Kevie has the same issue with sleep, unfortunately he can’t get the 11 because of school, but he makes up for it on the weekend. We also started the 1000iu of vit d daily and 1500 of calcium. It seems to help a bit with the energy. Who knows? Good luck and hope you feel better!
Dawn Kevies mom
AnonymousDecember 15, 2009 at 12:55 am
I have said for a very long time now (came down with a very sudden & severe case of CIDP in 2002) that fatigue is my worst residual. I can handle all of the rest: the AFOs, the cane, foot pain, lower back pain, etc. but I am always tired. I need 11 hours of sleep a day, if I don’t get it, I hit the brick wall & need an afternoon nap. It does shorten the day, but I can’t find a way around this issue.
AnonymousDecember 15, 2009 at 10:44 am
[SIZE=”2″][I]Thanks to everyone who has replied. It’s “nice” ( strange word in this context, isn’t it? ) to know that the fatigue isn’t an oddity or my own inertia. It’s annoying, that’s for sure! But if I sleep at night/morn, I find I can get a whole lot accomplished in the afternoons.
I’ll have 4 extra folks here over Christmas. If I drop off some time during the day, that’ll just have to be what happens, I suppose. There’s no way I’ll be getting any 11 hours at night/morn.
Interesting, really, how this disease presents a whole new set of obstacles. Being old and retired, I’d kinda’ hoped it’d be smooth sailing for awhile. ho! ho! ho!, eh?[/I][/SIZE] 😀
AnonymousDecember 15, 2009 at 7:35 pm
For the first two years after my ‘onset’ I was known to fall asleep mid-sentence in a conversation, nap 10-15 minutes and then wake up and complete the sentence! That I had to write down everything else said to me or going on around me? I’ve always found that aspect amazing. I take my ‘power naps’ very seriously! I don’t resist them and I try and learn and push my ‘limits’ as to what I can and can’t do each time out. I ‘register’ each activity and what pain or pay-backs in terms of ‘can’t do’s’ in my memory bank. Even the most coordinated of us needs training and awareness as to how to use a cane effectively! Thank goodness I’d learned. You really have to learn, and re-learn ‘body-awareness’ in terms of how your nerves are doing and wherever you are in time and space!
It takes a LOT of listening to your body to distinguish when nerves are dying OR re-growing! When nerves start to go zeep! or Zap! It can and is a breath-taking experience….Nerves re-grow at least 5 times more slowly than when they die, so it takes often years for nerves to re-grow when they’d died in seconds or hours [and we all know how much fun those hours are/were!] I’ve found that re-growing nerves activate most frequently [trying to re-connect to the brain, I guess? Docs don’t know, but that’s what I think.] after ‘stimulations’, such as exercise and PT and trying to live! I’ve mentallly categorized in to: IF it lasts more than an hour? It’s nerve death of some sort. IF it lasts about 5-15 minutes of breath-taking jumpstarting sort of electric shock? It’s nerves seeking directions! Give those nerves things to do? And they will start to say-What should I be doing?
Think positive, because the alternatives aren’t acceptable! Easier said than done for most of us tho. But, it’s the only thing that’s got my docs working for me and that helps heaps too!
What is the phrase? Been Down So Long, Looks Like UP to ME! Well, yes, we can sink lower into the abyss, but we have climbed out of it before and will/Must do it again!
You can beat this to a degree? You can do supplements that help? But you have to know that it all takes time for the nerves to regenerate and heal! And you can’t fall into the well of despair unless there is no hope! Hugs and good things to you SOON!
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