Hi everybody…I have never posted on the forum before, this is my virgin voyage so please be patient. I wondered if anyone else had problems sleeping properly? I suffer really badly with fatigue and I sometimes struggle to get my body going, it feels heavy, painful and I feel that I just can’t get out of bed. But I sometimes can’t switch my mind off or I just lie there thinking of nothing…even after taking sleeping tablets! This doesn’t happen every night but when you already suffer with fatigue it really doesn’t help and I wondered whether anyone else experienced the same/similar thing? I am currently on Rebif and take tramadol for pain relief although I am due to see my MS nurse & consultant this month as I have had quite a few relapses since my diagnoses last year and they are thinking of changing me to tysabri. Thanks for any responses. LisaW x
Hi Lisa, welcome and well done for making your first post.
Sleepless ness is a common thing amongst MSers…plus too much sleep is as well!!!
I dont have MS, but something with very similar symptoms.
When asleep and my body tells me it`s time to turn over, I have to wake to manually shift my legs, as they dont work on their own.
Sometimes I can get back to sleep, others not so.
last night for instance, I had my last wee around 11pm, then woke for another at 2.45am…hence had to get hubby to help me up into my sling and hoist. Then couldnt sleep for an hour or so after.
No wonder we are tired all day!
When I lie awake in the dark, I give myself games to play…like naming flowers with each letter of the alphabet…towns or cities as well.
Luckily I dont have to get up for work, so I dont panic at not having enough sleep.
Do you still work?
mention it next time you see neuro/ms nurse, eh?
Thanks for your reply I know what you mean about your body having to wake you up to turn over, I’m the same. I do have to take a trip to the loo at least once during the night but I do manage to stumble to the toilet. It’s sounds like your trip to the loo takes a lot more effort! I do still work but I have to say that I feel like I’m at home more on sick leave than at work at the moment. I have worked for my employer for nearly 24 yrs and I have requested medical retirement but it just takes forever. I am on less than half pay now when I’m off but have come to realise that my health is more important…plus I feel that poorly when I’m off that I couldn’t possibly work anyway. I’ll mention it to my nurse when I see her in a couple of weeks…take care and hope you sleep well tonight! LisaW x
Hi Lisa, welcome to the board.
A Poll said, it’s not uncommon for us to have problems with our sleep. I got referred to a sleep clinic ar my hospital a few years ago, and they strongly recommended a book called ‘Overcoming Insomnia & Sleep Problems: a Self Help guide’ (you can get it from Amazon, or your local library may have it if you want a cheaper option. One of the techniques in it was that if you’re not asleep within quarter of an hour then get up and do something relaxing, like reading or doing puzzles. Don’tgo to bed again until you’re feelng sleepy - not just tired, but actually falling asleep. If you still don’t fall asleep after quarter of an hour, get up and do the whole thing again. That way you help your brain to associate being in bed with going to asleep, rather than lying awake.
There’s a whole bunch of other things that help me too. I never look at the time, as knowing it’s 3am just gets me more anxious. Go for low lights in the evening, as too much light will stimulate the brain. Similarly, if you go on the computer then turn the screen brightness down.
I don’t have caffeine after about 5pm. And eating late doesn’t help either - I try to have my evening meal by half seven at the absolute latest. Getting some exercise every day really helps, even if it’s something more fatigue friendly like Pilates or yoga.
Also, giving my brain something to focus on helps loads too. So I’ve got some audio books on an MP3 that I’ll listen to with the volume so low I have to concentrate to hear it (the Narnia books are my current favourites - having a gentler story is probably a better idea than a gripping thriller!). And something I do that’s surprisingly effective is a variant of counting sheep - I count down from 1000 in multiples of 3 (1000, 997, 994, 991…etc). I can’t remember the last time I made it past the 900s : )
Hope you get some good kip soon, however it happens.
Hi Don, I also try not to look at the clock as it does cause stress. Many a night when I wake, I feel as if i`ve been asleep for hours, then if I do look at the clock and find it is only an hour or so since I went to sleep, then that bothers me.
The advice about getting up after 15 mins and associating your brain with activity then sleep, wouldnt work for me, as I spend a lot of time in bed. i go to bed about 6pm ish ands watch my fav progs on tv.
I do see that it could work for others though.
Welcome to the site. I have been a member since 2005 and it has helped me no end to talk with people who truly understand how I feel. Hope you will find it as useful as I have.
Back to your post. I very often wake up during the night and end up just putting the telly on and watching some rubbish that will send me back to sleep.
It doesn’t help that I cat nap durng the day because of the fatigue but I suppose it is just a part if the illness. Do you nap in the day?
Thanks dan that’s really helpful I will get the book and have a good read…some of the ideas sound quite good and when you think about it they make absolute sense! The only thing that bothers me is going back in to work and coping with sleepless nights as well as the other symptoms that come with MS. I’m back in tomorrow after being off since the beginning of feb after my last relapse…lets hope I sleep tonight! I do cat nap during the day sometimes shazzie if I need to and I’m off work. It’s something that I never did before MS and its taken me a while to listen to my body but as ou know, the fatigue is so overwhelming that you really can’t do anything but. I mentioned to my husband that I’d been on the forum and how good it felt to read other people’s comments and actually ‘talk’ to people in the same boat. It’s the start of a brand new group of friends I feel and a support network. You can feel quite alone with MS and feel like you’ve lost the plot as trying to describe to someone how you’re feeling isn’t always easy. My husband is quite experienced with MS so I am lucky I guess. His brother has very advanced MS and is totally bedridden, he has a catheter and struggles to speak some days so when I was diagnosed it was more upsetting for him than for me I think. Anyway I’m going on a bit here but thanks everyone for welcoming me to the site and coming back with some positive feedback. LisaW xx