Anyone had any dealings with this i dont know much about it but need some advice and ideas…not myself that has it i hasten to add
Cheers Adam
The latest thinking AFAIK is that the condition is best treated with a combination of psychological therapies and sleep rationing. I don’t know anything much about the former, but I practise the latter myself to help control fatigue in MS, with great results. It’s something most people dismiss as being insane when they first hear about it, but genuinely does work, so tell your friend to give it a try if that’s what the quacks suggest. It’s seriously hard for the first month or so, but if you stick with it the relief is enormous.
Can’t help beyond that, I’m afraid.
how do sleep rationing help you luce, does it work for everyone. i could do with feeling a bit better myself.
It’s really simple. Have a good hard think and work out what the normal amount of sleep you needed was when you were at your healthiest. Then cut out ALL daytime sleeping, and restrict yourself to that amount at night.It’s hell to start with, but stick with it and after a few weeks you’ll suddenly realise you’re a ■■■■ sight perkier through the day.
To use myself as an example… I used to scrape by on 6 hours, be comfortable on 7, and 8 was a lie in. This was back before my MS became severe enough to have been picked up by the quacks. Therefore I now only allow myself 7-8 hours tops. 7 as a normal rule, 8 if I’ve had a bad/broken night the day before or a particularly physically active or long day.
Don’t get me wrong, I still have to rest because of my condition, my body gives me no choice, but whilst rest for those of us with problems is a good thing, sleep is not. There comes a point where if you give in to the temptation to just kip and kip that it actually becomes counterproductive. So I go to bed dead early, but I don’t allow myself to actually sleep. I’ll read, or mess about on FBook, or listen to Radio 4. I’ve even got a friend whose main purpose is to chat late on about not a lot by phone. If I want to lie in of a weekend, I simply stay up later the night before. If I need to kick my body clock 'round, say ready for an early night Sunday and an early start Monday, or at the end of a period of holiday, I only allow myself the minimum 6 the night before my sleeping hours change.
The result of all this is that a) I’m much perkier during the day, b) my sleeping patterns are much healthier, and c) I fall asleep pretty much on demand as opposed to lying tossing and turning and dozing, as my body and mind are genuinely tired, as opposed to just dozy.
Try it, it really does work wonders. As I said, it’s a nightmare for the first few weeks/month, but stick with it and one day you’ll suddenly realise it’s working. 
il give it a go, at the moment im always trying to sleep during the day but i do alot of 4am starts and end up knackered.
jessicas dad:
il give it a go, at the moment im always trying to sleep during the day but i do alot of 4am starts and end up knackered.
having just looked on google for you alex it has come with this condition for you
frightlinercontdriveslazygitititus
You’ve just answered your own conundrum, then Alex. You don’t need MORE sleep to start early, that’s just ridiculous. What you need is good sleep at the right time. You’re trying to sleep during the day and therefore not getting tired enough to have decent quality sleep when you need it at night. The result? Crap sleep in excessive quantities and you feeling constantly knackered.
Try it. As I said above, it’ll be hell for the first month, there’s no instant gratification here, but it is worth it in the long run. 