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Sleep pattern and symptoms

Discussion in 'Lifestyle Management' started by river, Oct 10, 2010.

  1. river

    river

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    Since everyone says that going to bed early is healthy, I have often tried to go to sleep by 10 or 11 pm waking up at 7 am.

    But when I do this I have agitated dreams, sweat a lot during the night and wake up feeling particularly brain fogged, cold and tired. If I then eat breakfast, that's the last straw and I really feel weak and sick for the rest of the day, falling asleep again in the afternoon.

    On the other hand when I fall asleep by 2-3 am and wake up at 11 am - noon, I feel better. At least my dreams are serene, I don't sweat so much, I don't feel so spacey and I don't need to sleep in the afternoon. And indeed after midnight is when I feel the most "productive", in that I can read more than what I can tolerate in the morning or reply to email or listen to music (when I'm foggy and weak even listening to music excerbates my symptoms as I have sound intolerance and feel a shock anytime I hear loud sounds or noise)

    I have tried to fight against it by going to sleep earlier but always felt worse. I'm seconding my sleep pattern now and don't feel all the symptoms associated with sleeping, hard time waking up from profound sleeping, night dehydration and forning severe fogginess.

    Any idea why is it so?
    Is there are anything I can read about sleeping patterns and CFS and what works for you?
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    if u dont have work comittments etc, i would stick to sleeping when your body tells u too, if not the only thing that has helped me is to go down the sleep med trail. melatonin with sleep meds has helped me get out of some strange sleep cycles in the past, u might be right with just melatonin. your sleep quality sounds ok, just an abnormal sleep cycle. Google delayed sleep phase disorder, might be of interest for you.

    cheers!!!!
     
  3. alex3619

    alex3619 Senior Member

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    Hi river

    I am starting to get the impression that this type of sleep problem is a normal part of CFS, and often gets worse over time. Many long term (15 years plus) patients have them, and can trace them back to early on, just in a weak form. Many also report that going with what works for you is the best idea; I know I hold that opinion for my own circadian sleep problems. Melatonin doesn't always work, nor does light therapy. Dozens of different things interact to create this problem, and there is almost no research on this problem in CFS, although sleep is a hot research topic in other conditions.

    Bye, Alex
     
  4. ukxmrv

    ukxmrv Senior Member

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    I don't know how anyone can argue that early bed/early rise in people with CFS could possibly be healthy when we have low cortisol in the mornings.

    From 6am onward I awake with shaking, vomiting and fainting. This lasts until lunchtime. I try to sleep through this and live my life in the afternoons/evenings. My daily functioning is much higher, my pain/discomfort levels lower and my mood steady.

    Obviously, this isn't always possible, I worked for years with the symptoms above and also tried to find work in the evenings/afternoons to fit around this. Parents with small children would find this really hard to do and I sympathise with them.

    My morning cortisol levels never changed to fit around the 9-5 working pattern and I struggled to survive. Oddly enough most of my family have a mild version of this and the problem predates the CFS in myself and other members. It just got much, much worse on the acute onset of the disease.

    Now I am too sick to work at all and can accommodate the ideal sleep pattern (late nights, late mornings) and this lets me function to my (low) optimal level under the constraints of this terrible disease.

    XMRV+
     
  5. Athene

    Athene ihateticks.me

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    Does anyone find that they feel tired early in the evening and HAVE to go to sleep, but then wake up about 2 am and cannot sleep any more, even though they feel appallingly tired?
    This keeps happening to me lately and it is awful. The hour from 3 to 4am is when your body manufactures all its endorphins and if you are awake, you miss out.
    If only I could sleep in when I finally feel sleepy, about 7am, it would be better. But that is when my little boy wakes up, and so I am doomed to haul my weary self out of bed with almost no cortisol to get me moving... argh...
    River, if you can follow the sleep pattern that hyour body wants, do it... I am sure that is best for you.
     
  6. river

    river

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    This might be something related to hypoglycemia.
    I suffer from hypoglycemia and haven't found anything that works for me: too many carbs and I have glucose rushes and sudden drop, low-carb and I have chronic low blood sugar. Anyway, when I am hypoglycemic I feel extremely tired in the evening expecially after eating but then after few hours I wake up and feel awake, athough tired, because during sleep my glycemic levels have been restored. I have tested with a glucometer from time to time and I when I felt so sleep I could hardly keep my eyes open on evening or after dinner, I was always extremely hypoglycemia (35 mg/dl)
     
  7. illsince1977

    illsince1977 A shadow of my former self

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    Count me as another 2am-11am sleeper. If you're already too sick to work anyway, so that getting up for work isn't an issue, I'd do what comes naturally and works for you. I don't torture myself any more with all the things that are supposedly good for me, that others think I "should" do or that others think "should" work. Sleep hygiene, diet, stuff like that. More often than not it has the opposite effect. I do what works for me. On top of that, I suspect a lot of those lifestyle "shoulds" may derive from some puritanical bent in our culture rather than fact. But that's just my rather opinionated opinion.
     
  8. bakercape

    bakercape Senior Member

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    Thats me too

    I find I feel my best between 7pm and 2 am. I thinkit's becauuse the world puts no demands on me then. I also just feel too wired yet tired. But my body does not want to get up in the morning so to sleep till 10 or 11 feels like what my CFS wants of me so I feel best when I can just go with it.
     
  9. Esther12

    Esther12 Senior Member

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    Surely if loads of us are nocturnal - and we're the ones who've not improved, that could be a sign something's up!

    I've always been really nocturnal. During school holidays I'd change to going to bed at six, and sleeping til two.

    Currently I do try to go to bed at a more normal time 2-3 at the moment. I have gone through periods of getting up earlier, but it has just made me feel worse (at least over the medium term).

    I've not noticed more normal sleeping patterns to bring any improvement, and the reasons others have for promoting them seem a little tenuous to me - but I'm not really sure. I wonder how normal it is for non-CFSers to slip into more nocturnal sleep patterns when they're not employed in a 9-5 job?
     
  10. Mark

    Mark Acting CEO

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    Me too. I'm very rarely awake before midday. Don't really wake up until about 5 or 6pm. By about 10pm I'm functioning fairly well. I do a lot of work late at night or in the small hours, that's when I feel at my best. I manage best by sleeping as and when I feel the need to, and staying awake and productive when I'm able to, even if that's in the middle of the night. Fortunately my current employer and manager are very understanding about this, which is the only reason I have been able to keep working, part-time, from home. If I didn't have that flexibility over working hours, I shudder to think what would become of me...my food, supplements, need for regular replacement clothes etc, all do cost money and if I couldn't afford all that, I know I would spiral downwards rapidly as I have done in the past.
     
  11. Mark

    Mark Acting CEO

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    Well there we are again Esther12, happening to post at the same time yet again! Our biological clocks do seem to be somewhat in sync!

    I'd question the idea that we ones posting here are the ones who've not improved. I suspect many of us are relatively better off than a lot of people, since we currently have enough energy to spend posting on the forum. Quite a few of us post because over many years we've found things that work for us to some extent at least, and we want to share those findings. And we can quite easily forget how many thousands of us there are out there who never have enough time or energy to post here.

    I must admit that I too have always been an owl and not a lark anyway. And I do think that having the opportunity has probably allowed me to slip into those nocturnal patterns more so then maybe I need to. But ultimately, I do tend to think that following what my body tells me to do, rather than what hours convention tells me I ought to be keeping, might well be the more healthy approach.

    Does anybody know anything about the political situation regarding "owls" and "larks" in scandinavia? I've read that it has become a political issue, and that the "owls" have had it recognised that we are simply a different biological type - so it's come to be presented as an issue of discrimination against "owls" that they have had to fit in with the working hours of the general population.

    I'm quite sure it's absolutely true, this idea of different biological types. Whenever I find myself in a conventional office scenario, I find it quite incredible how totally alien the shared experience of the other people is. They all seem to comment that they are starting to flag just as I'm getting an energy boost, and they hold meetings etc at times when they all feel at their best whereas I feel like death warmed up. It really annoys me when they insist that they are "normal" and I'm not, and that they seem to think that the way they are is just the way all humans are. I can tell they don't see my type as legitimate; they regard it as 'laziness' somehow, and when they start falling asleep at 3 or 4pm and I'm running round enthusiastically trying to get things done, they don't seem to notice the boot's on the other foot now, they're just annoyed by it of course. And all of those observations came from earlier in my life - adding my illness on top of all that, it all just gets even worse!
     
  12. ukxmrv

    ukxmrv Senior Member

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    The Scandinavian movement is the "B Society". I joined when it was featured on the UK radio a few years ago.

    http://www.b-society.org/
     
  13. Mark

    Mark Acting CEO

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    :thumbsup:

    Nice one, thanks for that!
     
  14. Esther12

    Esther12 Senior Member

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    Hi Mark. I've got to admit that I've always been a proud owl, but if it is that owls are more likely to suffer from CFS than others, maybe we are doing something wrong? Or maybe whatever it is that makes us more comfortable with a relatively nocturnal sleep patter causes other problems, independently, which prone us to CFS?

    I did phrase that clumsily. But if there are lots of chirpy, healthy larks telling us to get to sleep earlier, and we're a collection of sickly larks insist that there's nothing wrong with our night-time ways, it does make me worry that we might be wrong.

    I don't know. The evidence supportive of the notion that we should all be going to bed and getting up earlier doesn't seem very strong to me (especially considering the confidence with which some hand out this advice) but just the seemingly high number of owls on this forum is enough to make me think that it could play some role in perpetuating or predisposing people to CFS.
     
  15. Mark

    Mark Acting CEO

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    Well I haven't seen any evidence that a majority of us are owls either, so I'd question the premise again. I think it's just that the circumstances of CFS - like being unable to work in a 9-5 job - give a little more reign to us owls to explore our owl nature, which is perhaps one of the positives of it all.

    Try honestly to behave like a lark and see if that makes you better then. I think you'll soon see the truth of it! Have more confidence, and ignore the damn larks, I say.

    Well I agree that the evidence in favour of this proposition seems to be no stronger than a reference to the old saying about the early bird catching the first worm...it's just one of those unquestioned things that people never really think about. And again: I don't think there are particularly a high number of owls on this forum, and even if there are, we can easily think of explanations for that in the nature of the forum community itself, the sort of people who spend their time posting on such forums, etc, so I don't see any reason to think that has anything to do with CFS. But an Owl vs Lark poll might be interesting, for sure.
     
  16. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    This is listed in the Canadian Consensus Critera for ME/CFS about sleep:

    3. Sleep Dysfunction:* There is unrefreshed sleep or sleep quantity or
    rhythm disturbances such as reversed or chaotic diurnal sleep rhythms.

    Going to a sleep doctor and trying to having this "problem" fixed with sleep hygiene, sleep schedule, forcing yourself up at a certain time, bright light therapy, etc., will likely result in a severe exacerbation of CFS.
     
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I know im not an owl or a lark but cfs has broken my sleep thingy. I have no pattern to my sleep. I have problems getting to sleep, when i sleep naturally it doesnt last long and it is very light/broken sleep and i cant say i prefer day or night. I know after 32hours of no sleep at all i start to hallucinate, feel nauseas and my brain feels like its sizzling, time to take a combo of meds to sleep. I will say that i have control over my sleep most of the time by using medications (which i alternate between and have kept the dosages stable) and with the help of av's im working full time, i do know that without sleep meds i would be struggling to work part time even with av's. Pre cfs i would normally go to bed between 11pm and midnight and function quite well on 6hours sleep with the occassional sleep in. I am a shift worker and my sleep pattern had stayed pretty much the same for 15 years on rotating shift work until cfs struck. I think sleep will be my last symptom to resolve , if ever.once in awhile say every 3-4 months i will naturally fall asleep in the afternoon and sleep 3-4 hours of deep drug free rejuvinating sleep, wow it feels so good, maybe this is a sign my sleep thingy isnt permanently broken.

    cheers!!!
     
  18. helen41

    helen41 Senior Member

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    I think I fit in the "chaotic diurnal sleep rhythms" camp. I battle to stay awake until 9 pm, then if I wake up an hour later I know I'm in trouble. I'll be awake 10 minutes, sleep 30 min, awake 15 minutes, sleep for 45, and on and on all night long.
    If I regulate my life really carefully I sleep much longer between awakenings. I think in the end we may vary in the way we manifest our sleep disturbance, but few people manage to sleep normally.
     
  19. L'engle

    L'engle moderate ME

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    Hi folks,

    My boyfriend and I are about equally sick, but he suffers from terrible insomnia on par with a lot of people here.

    As for me, I've been going to bed at around 8pm, sleeping from 10pm or so, and waking up three times or so in the night until 7am, to eat and use the washroom. I usually lie in bed for an hour or two after that, but if I fall asleep in that time, I run a serious risk of sleep paralysis, where I struggle for what feels like a very long time to wake, open my eyes, escape from a dream. It's gotten so bad that I've been lying there trying to call for help, unable to move. I wake up from this very agitated and unhappy, but the strange thing is, if I don't go back for this extra hour or two of sleep, I think I may be more tired later on...

    With him, it's the opposite. If he goes to bed before midnight, he wakes up shortly after and is then awake for hours. Other nights, he can't sleep until 5-6am, which is torturous. Then he has fractured sleep from about then until noon or so, and is tired all day. So he is never properly asleep, but never properly awake either. He's tried melatonin, valerian, St John's, 5-HTP, they just leave him with a 'hang-over' the next day.

    I'm marginally more awake in the day but am still only eking out a small amount of functioning. Neither one of us lives a remotely normal life, but at least I can sleep at night. It feels good to go to rest when it gets dark and wake gradually as it gets light. I have to be careful not to get trapped in the paralysis though.

    Seems there is no easy answer. I also get crashed blood sugar in the night and have to eat several times. I think the only thing we can do is live on the schedule our systems will allow, since the illness is in control, not us. :In bed:
     
  20. kevinchaapel

    kevinchaapel *****

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    Using mixed populations and different methodologies, a small body of evidence has accumulated suggesting a correlation between sleep loss and mood states, particularly depression. Sleep disturbances and symptoms of anxiety and depression have been shown to be involved in the genesis and perpetuation of chronic pain.
     

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