suggestions?

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

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.
Laurel

Hi, I find swimming in our pool revives me a lot of the time.Its very relaxing and calming. I cant swim at the beach anymore because I overbalance all the time. cheers Jet

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

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.

I’ve taken Provigil for a couple of years, and now take the newer version, Nuvigil. I don’t believe that they’re “addicting”…they’re more like any other drug that you take long-term…you get used to them. I’m not sure I’d be able to work without them.

I’m with you Elmo! If I did not take the Provigil, I know I could not work.
Sue

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!