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Chronic Fatigue Syndrome
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Posted 9/22/2009 11:11 PM (GMT -8)
I have CFS and fibromyalgia. I've been diagnosed with fibro because I have the classic "tender points" but the pain is not a major issue for me, it 's the fatigue. I'm unable to work and unable to do much at all, even chores around the house, because I am always exhausted.

I've had this fatigue now for about 30 years. It started out gradually, imperceptibly, and got progressively worse over the years.

My question is about sleep, because I haven't seen it discussed that much and it's major issue for me. I think my inability to sleep might even be the whole explanation of my symptoms. It has always taken me several hours to fall asleep, ever since I was little. Right now I have no control over when I sleep, because I seem to lack the ability to fall asleep easily, or sometimes at all unless I've been awake for more than 20 or sometimes even 30 hours. Once I'm asleep I can usually sleep for a decent amount, it's the falling asleep that is so difficult. As a result, my sleep schedule is all over the place, and I have no control over it.

I don't nap, because that is impossible, since I can't fall asleep unless I've been awake for a long time. I have never fallen asleep inadvertently, like at a college library or a boring lecture, and I can't fall sleep on long bus or car rides.

I've been to see a couple of sleep specialists but they were no help at all, suggesting "sleep hygiene" measures that were just insulting. (That's like telling someone with anorexia that they should try to cook more-appetizing meals.)

Has anyone else found their insomnia to be a major component of their CFS and fibro?
Posted 9/25/2009 4:48 AM (GMT -8)
im new here today and reading your post is like reading about myself its so strange.Wish i could give you advice that may help but relly struggling myself at the moment. I also feel constantly exhausted even if i have slept-not that sleep is easy. i have various medical conditions and take medication and always wondered if all my problems were just side effects of illness or meds. Like you i can lie down for hours trying to sleep but to no avail but when i give up trying to sleep its a real struggle to do anything. Just keeping the house in any order is as much as i can manage(and not always that). as for going out or meeting friends that is out of the question as i dont even bother trying no more as id never get further than getting washed,dressed and to wherever wed arranged to meet up. i have tried to talk to drs about the way i feel at time but they always act as if im a hyperchondriac as im only 34. got to the point now that i just accept that there are many things i cant do although i have days where i feel as though im missing out on life. apart from the tiredness i ache all over(worst part back,neck and shoulders though) the hardest thing at the moment is that i now avoid friends and family as so embarrassed at always being exhausted and in pain-its like that without a dr actually given a name to my exhaustion etc im just being lazy.wish it were that easy because could just start to do things build stamina but tried forcing myself to try and do little more each day but ended up in so much pain could hardly move after few days. sorry for going on about myself it just helped me putting it down. I hope you find a way for you to feel better-have a good day.
Posted 9/25/2009 9:25 AM (GMT -8)
I'm a newby and just to let you know how I sleep. My doc prescribes Ambien CR, Klonopin 2mg, hydrochodone if you have nte pain, and Melatonin 1/2 to 1 mg (per sleep doc specialist).

I tried Xyrem but wasn't titrated off nite meds so had negative effects. I will try the Xyrem again in a few months. It is not FDA approved for Fibromyalgia yet but will be on board hopefully in a few months. It is approved for Narcolepsy or excessive daytime sleepiness which we have from not sleeping.

Xyrem takes one into stage 4 sleep once dosing is right for the person. It tastes NASTY but Jazz Pharmaceuticals helps with adding something like Crystal Light. Anyway, there is hope. Though somedays I wonder where it is.

From Oregon, dk
Posted 10/26/2009 11:25 PM (GMT -8)
I can not sleep if I want to.. Fybro and sleep problems go hand and hand!! Even when I so tried I can't keep my eyes open I can't sleep. I going for a sleep study soon and sounds like you might need one too. Since I never know when I might get my sleep I get to do the test at home so there's really no issue in taking the study. I'm praying for some good answers.
Posted 11/1/2009 4:06 AM (GMT -8)
I've attempted to get a sleep study but had no luck. They told me I had to go to the center and that I had to go to sleep at 8pm, which was just absurd. It's 7am as I'm writing this and I haven't slept yet.

The doctor (who was a pulmonologist, since that's who you have to go to for them to order a sleep study, at least with my insurance) said the most harebrained thing, which still makes me angry. She said the reason people have sleep problems is because they get used to staying up late when they are in college. I am 45 years old!

I have tried Ambien and it does help me sleep, but the next day I am just as tired, so there's no benefit in taking it.
Posted 12/20/2009 5:05 AM (GMT -8)
yes i sleep 12hrs last night, But for nearly 20yrs i never did, Amitriptyline gets me to sleep but GABA powder keeps me asleep it is cheap and easy to use,


you must find your own dose, i use about 10grams,

sweet dreams smilewinkgrin
Posted 12/24/2009 10:02 PM (GMT -8)
I go both ways with sleep. Some days I can't fall asleep at all.. then other days I can't stay awake. I am going to the doc for some Ambien to try and get me asleep at a decent time. Then hopefully with a good night sleep I will have a good day awake!

Hope you figure something out!!
Posted 12/28/2009 1:22 PM (GMT -8)
I WAS diagnoise with cfs in l995, found out by error, i was seeing a blood dr. for my high ferrin, i have 1 band of lyme, 41kb reactive.....get tested people.....
Posted 2/1/2010 12:07 AM (GMT -8)
I can definitely relate to sleep issues. I've had a terrible time with sleep for about 5 years. I can be totally exhausted, but still can't fall asleep- my brain just won't shut off no matter how much my body wants it to. Pain does enter into the equation much of the time. I seem to be resistant to most sleep aids. The only thing that helps me sleep in less than 3 hours is xanax.

I do not know what is causing the insomnia, but I can only assume it is related to my fibro since the beginning of my sleep issues coincided with the beginning of my fibro problems. But being in chronic pain can also cause anxiety or depression as well. I contend that I'd be a lot less depressed if I wasn't in pain all the time or could get a decent nights rest.
Posted 2/1/2010 5:28 AM (GMT -8)
Well, last night was a fair night. I slept two hours. I have one or two nights a week where I don't sleep at all. Often it's from pain, but sometimes I'm just vaguely uncomfortable and can't settle. I think I tend to hold my body more rigid so I don't roll over on something that hurts or get into one of the positions that causes muscle spasms.

Because I'm on quite a few other meds, my doc doesn't want to give me a sleep aid, and that's okay because I've never had much luck with them anyway.
Posted 2/1/2010 12:52 PM (GMT -8)
I have sleep problems for over a year now I use ambien and trazodone for sleep. I have to witch between these two meds.
Posted 2/24/2010 12:01 PM (GMT -8)
I have been taking this herbal supplement called Fibromya for the past month.
Surprisingly, i have been getting more sleep and less body pains. Personally i was a non-believer in natural supplements before taking this herbal drugs.
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