Sleep to is a major issue with me too and with the amount of meds I take a normal person would sleep for a week.NO it can't be hung on insomnia!!!They just don't get it!!! The only way I get a fair nights sleep is by taking an over the counter sleep aid once or twice a week but am still tired in morning.But just to have a fairly good sleep is WONDERFUL!!!!!

Sleep? What's that? I take a drug-induced comma every night, then drag around all day in a fog. Unless I jump start my day with caffeine which carries me through but I know it's the last thing I should be putting in my body. Probably one of the reasons I'm so burned out now. Blood tests show no melatonin in my body among many other things. Even when I lie down for an afternoon nap, I'm just resting my physical body. My head is still awake. Am I wacked out or what??!!

I will lay in bed for HOURS completely EXHAUSTED, but my mind just won't turn off. However, once I do manage to fall asleep, I can sleep for days. I'm sure we would all feel so much better if sleeping was easier...

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4Sons -

Good sleep remains elusive for me.

I do use a CPAP machine for sleep apnea...and it is helpful but not the panacea for CFS.

I would pay a great deal for anyone who could guarantee me three nights in a row of good sleep...

I did find something interesting while I was dating a year ago, I found human touch...now, don't go errotic on me folks...I mean simple human touch helped me sleep better....and I believe as a youngster with 8 brothers and sisters for my mom to attend to...I experienced tactile starvation....go figure....we all got here some how....just some thoughts...

Andrew

You know and I don't want to add to your burdens but when you are reaaly in pain recheck those fibromyagia trigger points yourelf. I have cfs and fibro. Find the 18 point one. marilyn

Last year I often slept 14 hours at a stretch and still felt exhausted. Now I go through periods of sleeping loads or, if i'm lucky, three or four hours, broken sleep, a night. There are the occasional nights that I do get some refreshing sleep, but they are few and far between.
You are absolutely right. Insomnia cannot be 'hung' on CFIDS.

Dallas, are you saying that I could have been tested for the 18 fibro "trigger points" 2x (negatively) and that I STILL might have it? Or could the waxing/waning pain be CFIDS?

You can get insomnia on both. I have both. but if you don't have the trigger points you probably don't, You can find on fibro site a picture where to find trigger points are.even if you press just under knuckle on thumbs or lots of places.

I was being tested for fibro by a rheumy when he realized I had CFIDS. It was one or the other ... one having the trigger points and one having the crushing fatigue. My heart goes out to those who have both. I can't even begin to imagine it ...

I dont' think that I have heard of insomniacs developing CFS??? I know that without sleep our pain levels do rise - there was a study done about sleep deprivation and it brought on FM symptoms. I think your insomnia is probably from overtiredness, we all get it at some point. When you are just so exhausted you can't sleep!

After the real fatigue set in and I knew something was really wrong with me the next thing to start was insomnia. Before the fatigue I could take some melatonin or benadryl or valerian if i needed to occasionally and I'd sleep fine. All of a sudden these things didn't work anymore. Especially the benadryl, which would have knocked me out before, actually had the opposite effect. CFS changed something in the way my body worked. I can't sleep unless I take Ambien and Klonopin and melatonin and herbs and calcium/magnesium. But the combination is helping me get seven hours pretty consistently. It took a year to get the combination right. I never had sleep problems before this. It has been the worst part of CFS for me until recently when i discovered (Finally) the right mixture of pills. I notice that the more stressful - either physically, mentally or emotionally- my day is the worse my sleep is. If I am exhausted I can't fall asleep or stay aleep and it's usually my mind that keeps me awake - sometimes I used to feel my heart beat faster but normally its my head that wakes me at 2am and keeps me going. Thats why pacing and stress management is key.
I was just recommended to do a sleep study and don't believe it will tell me anything new. I too am looking for opinions about its worth. I sleep peacefully - I have dreams when I get enough sleep. When I have exhausting days i wake up at 2 or 3am and know it will lead to pain and increased symptoms.
So I think No, in my experience CFS comes first and, from the wisdom of Dr. Teitelbaum and my own doctor, doing anything and taking anything necessary to begin gettting 7-8 hrs. a night is the first step to healing after which other interventions can begin to be more successful. One of the reasons is you produce human growth hormone during sleep.You need that to reset all the systems that went off in your body when you got CFS. I think you answered my question. I hope I answered yours.

All sleep isn't sleep, it's STAGES of sleep. There are 4 or 5, right? I am now having major loss of RESTORATIVE sleep stage. And I have a feeling I had this trouble my whole life, and my hormones are believed to be at the crux.

I've tried all the alternative things, but they made my mood too dark, and I don't need more secondary depression than I already have.

I hear you ... I was told all my sleep was in Stage 1. I NEVER get to the REM. NEVER get restorative sleep. Ugh.

Saw my consultant yesterday and he has referred me to a sleep clinic too.
I think I have sleep apnea. The doctor said something along the lines that sleep is restorative and if you have broken sleep, or not getting enough sleep than it can ADD to the fatigue. So, he is saying that lack of sleep doesn't cause CFS but contributes to the symptoms.
He did get a little more technical and started talking about cells and oxygen but I'm afraid my brain couldn't take it all in at the time. Will be doing some research on the internet later!
I realise insomnia and sleep apnea are not the same but hope this may of some help to you.