I tried the melatonin only a few times and was wide awake 2 hours after taking it for the ENTIRE night—seemed to have a stimulating effect. I’ve also read that melatonin only works for people who arent’t producing it properly at night–possibly if were not falling asleep with it –our bodies arent lacking it??? Lori
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.
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 same trouble somtimes.but not always i got gbs in aug 05 but it didnt get far before i caught it so i didnt need ventalation just plasm somthing and neroligist in richmond ind are not good with my after effects have,nt been able to work since but still fighting disability and they took my medicade and i realy need to see doc again but cant
🙁 Hi Kimberly I’m afraid I have not slept well in 11 yrs. I can’t sleep unless I take something, have been on Ambien and now Lunesta. I have gone for 3 days and not slept. I’m tired but that makes no difference. Wish I had a solution for you as well as me. Joanalice
I am 6 years out & fatigue continues to be my biggest issue. I think I have gotten over the physical disability part; the residuals I have been left with, like needing AFOs to walk & needing a wheelchair for long distances. But feeling tired all of the time can be so frustrating! I try to get 10 hours of sleep a day, if I can’t get it in the evening, then I must take a two hour nap in the afternoon. Even so, I rarely can do much in the evening but veg out in front of the TV. I am so glad my husband gets it, he remembers the first 3 years when all I could do was sit in a power chair or lie in bed, having to have everyone do virtually everything for me…
I really feel for those of you looking to date or in the process of dating. How does one explain the hardest residual of fatigue to someone, expecially if you look so “normal.” It takes a very special person to want to read up on the material about how one has to battle fatigue, I wish you luck in this respect…
I have CIDP and do not sleep without a sleeping pill. Even with the pill I’m up everytwo hours.
Today, whole body has been having jolts, tingling, shivering. Unable to control any of it. Just have to lay down.
If remains in AM, will call MD and make sure my symptoms are not progressing.
Hope to Tomorrow is better for you.
First off, don’t ever be afraid to talk to us through your threads and posts. We’re a BIG supporting family. Now about sleep. If Kevie just started with a sleep problem recently, then it caused by anxiety about something. But if he’s had a problem sleeping since the first day of the syndrome, it’s either both or the physical feelings you get when you try to find a comfortable sleeping position. I have terrible problems trying to sleep, ever since the first day of CIDP because my comfortable sleeping positions were taken away. I never could, even before CIDP, lay on my back. I used to sleep best laying on my stomach, but can’t anymore because I lose all sense of perception, can’t feel how my legs are placed. I feel like I’m twisted like a pretzel! The only way I can “try” to sleep is on either side, with a pillow between my legs. Since I’m on my side, my arms get placed one on top of the other and I feel like I have bone pressing against bone. That bone to bone feeling is why I need to put a pillow between legs. This is the ONLY way I can sleep though. Ever since the syndrome happened to me, it now takes me two to three hours to finally fall asleep. I think the dark circles under my eyes have just become a part of me so that no-one else notices.
I also have anxiety/stress reasons why I can’t sleep, so even if it wasn’t for the physical reasons, I still wouldn’t get a good nights sleep. I think we’d all agree that this alone can cause lack of sleep. The reasons for my anxiety/stress is a long story, so I won’t go into that. A sleep specialist might be able to control the anxiety/stress reasons, but not the physical feelings these syndromes give us.
I wish I had an answer for you, but I don’t. I just wanted you to know that I understand. Is Kevie able to tell you exactly what he feels when he tries to sleep?
From my heart,
I’ll be back with a hug.