Thank you Coffeegirl, Yeah I'm not overly keen on all the medications either coz my body often doesn't tolerate them so well. The Amitriptyline that I'm on at the moment and isn't working at the moment is the only thing I've tried so far that I don't react badly to.

I'm sorry your sleep is so up the wall too. It's just SO frustrating isn't it!

Someone on another site mentioned seratonin (not sure if that's spelled right) as a possible non-prescription rout to try and I thought I'd mention it to you as you're struggling too.
I'm going to look into it and I'll try to let you know how it goes.

Hey, Coffeegirl--just FYI, seratonin is a chemical in the brain. so maybe someone was saying that changing your seratonin levels might help you with sleep? i'm not sure, but i wanted to let you know. of course, maybe there is something out there where people are now giving it to you in pill form--you never know these days! :)

melatonin is some kind of herbal remedy that is supposed to help you sleep. however, i don't know much about it, so totally do research and talk to your doc to see if might be helpful to you! i took it years ago because my mother kept insisting i try it, but it wasn't helpful to me. but, i've heard that it has helped many people.

i've started considering taking a half a unisom at night to help me sleep. i used to do that when i was pregnant, because my symptoms were WAY worse during that time, and it sounds like i would have similar sleep patterns as you during that time. kind of interesting, i think...anyway, i think i may try that route, esp since i'm now taking phentermine to help me during the day. just the drug sequence i've always wanted--uppers to help me stay focused during the day, and downers to help me go to sleep at night. this freaking illness SUCKS sometimes!!! hope you find something that works for you soon!

also, i hear provigil also can help with this syndrome? typically it's called something else because people who have their "days and nights mixed up" get this problem, but it's been shown to work with some people with CFS as well. i don't know...maybe something to look into? good luck!

Thanks Coffeegirl, I don't have too many side effects from Amitriptyline I'm just finding it's not having the effect I need at the moment. I don't want to try other meds if I can help it but will keep Trazadone in mind to ask my GP about if I can't sort this out any other way.

lbennet, thank you. Yeah this ilness DEFINATELY sux!

Loveflowers, thank you.
I don't have any caffine and I've tried most of that sleep hygine stuff and a heck of a lot of other 'routine and sleep behaviour' and all I do is lay awake staring at the ceiling or the inside of my eyelids all night.

I'm mostly bedbound and doing even that amount of light stretching triggers an increase of symptoms at the moment for me but I try to do as much activity as I am physically able to.

I haven't tried eating protein at night and in the morning though so I'll give that a go.

I'll put the Omega 3s on my list...what is Mitochondrial support?

I have totally been there. I don't have much advice for you, unfortunately. The only thing that works for me is sleep hygiene. Going to bed at the same time every night and waking up at the same time, and of course no naps. But as I tell my husband all the time, it's like manual labor. It's almost impossible to do and it's a constant fight, honestly, nothing else has worked for me. Sorry! Sometimes I feel like the only thing that will keep me awake in the middle of the day is slapping myself in the face. Obviously, I don't do that, but it's about the hardest thing I've had to do. Good luck!

Jo Cari.

It's difficult to go through life sleep deprived and the havoc it creates in our bodies, OMG. Fortunately, I'm retired and can sleep whenever, but that seldom happens.

I also had horrific side effects on the amitriptyline, so that med is a no, no, for me. Through the course of treatment for sleep disorder I have tried several meds, including trazadone, ambien, and valium, etc. These all work to some minor degree, but I can never get past 4 hours.

I awake in pain, or peeing, or with a hatch like pain splitting my head open. Therefore it's obvious sleep medication doesn't help this type of sleep disorder. Regardless of their minor contribution to my sleep, I still will take something when I have something important engagement the following day in the hopes they will offer me some help. I really don't want to take any medication.

It is helpful to have several hours of daylight and higher levels activity to reset your biological sleep clock. Your next step is to go to a sleep disorder treatment center, but I personally haven't rationalized how that will help with the pain that wakes me.

So, for now, it's three or four hours, if I luck out I'll get five, then pass out and take naps as needed.

Sorry, I couldn't be more helpful, but I'm still working on six years of pain without resolve.

Could you post more helpful hints other than light and activity levels as you gain a better understanding of remedies for our non-restorative sleep cycles?

Blessings,
Alicia

I have the same problem for years.

I noticed that when I get better, I wake up in the morning and sleep at night automatically(Without doing it intensionally). I think it's because of the reduced pain level and more energy to get me through the day. So that I can stay awake in the day(with a nap in the afternoon), and not too stressed out and too much in pain to sleep at night.

On the contrary, when my CFS gets worse, everything goes wrong.

I take 5mg of timed release melatonin at bedtime. I take a lot of other meds but it's the melatonin that helps me stay asleep. Unless of course I'm in a lot of pain and then nothing helps. But that's another issue.

Thank you all for your responses.

What I have found the most helpful is to start taking melatonin. Melatonin is a hormone that is naturally produced in the brain to regulate sleep patterns. In M.E./CFS it can get screwed up so taking it as a supplement can help. You take it an hour before trying to sleep. The amount you need will be different for different people. I started low and gradually increased it until it started having an effect. Then once I was sleeping at night I began setting my alarm for 2 PM to wake me up. If I need to nap in the afternoon then I allow myself to do that. Getting over tired seems to make my body produce adrenalin (I feel all the physical symptoms of it like shaking and nausea and upset stomach and stuff) to keep going which then makes me less likely to sleep when it comes to night. So although you would think that naps would make you less likely to sleep at night I find it actually HELPS me sleep at night.

I am feeling very ill when I wake up and for a good part of the day (far worse than I felt when I was being awake in the nights) but I am sleeping at night and awake in the day which means I am able to spend more time with my family and that's what I wanted.

Yep my sleep pattern has been up $#!+ creek for 7 years. It wasn't until we found that a virus had damaged my Pineal gland that we understood my natural Melatonin , IL-6 and TumorNecrosing Factor were damaged that I had some emotional justification as to why my body clock was knocked for 6.
We also found I have very high Nitric Oxide blood gas and H2S. both these blood gasses mess up the multiple slintegrated sleep clocks in each organ in the body.
I take Rivotril which helps.
Melatonin 2 x 3 mg per night, 3 x Glutamine L and another nnatural sleep inducing suppliment and about 50% of the time they help. About 1 mingth per month I fall asleep at @ 10PM or 11PM. 50% of nights are total insomnia. It sucks. I'ts my number 1 enemy.