Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Does anyone on here sleep normally?

Discussion in 'General ME/CFS Discussion' started by AdamS, Apr 1, 2017.

  1. AdamS

    AdamS Senior Member

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    I just wondered what the average nights sleep looks like for other members? Is there anyone on here who has managed to improve their sleep hygeine and thus their overall symptoms by sleeping consistently at relatively normal hours?

    I managed to sleep well for around 10-14 nights in a row about a month ago and found that it really helped my overall energy levels. Then I pushed to hard and ended up with insomnia, restless legs and pains again...i'm slowly trying to improve my sleep again to see if it helps!
     
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  2. Jessie 107

    Jessie 107

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    Yes I sleep really well and I am so grateful that I do, last night I slept solid for nine hours, my usual is eight and a half. But I can't just spring out of bed like I used to I still feel ill and mornings are not good for me I get better later in the day. Goodness knows how bad I would feel if I didn't sleep well you have my sympathy. Occasionally I do have trouble getting to sleep because of rest less legs though.
    I always go to bed at the same time each night and get up the same time in the morning which I think does help, I also don't use computers after nine in the evening to give my brain time to calm down.
    I have always been able to sleep well, but if I do get a night when I don't, I feel like death the next day.
     
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  3. purrsian

    purrsian Senior Member

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    Since having CFS, I've always had that horrible feeling waking up, but usually my sleep has been okay-ish, never great but never insomnia. I tended to take a while to get to sleep (30 mins to an hour) and would wake up several times throughout the night. I've been taking LDN since December and have found it helps my quality of sleep. I can still take time to get to sleep, but it feels better quality and I don't wake up as often, and when I do it's only very briefly. Usually sleep between 7 and 9 hours, but it's not really a set time. Never found that helped.

    Caffeine affects my sleep a lot, so I avoid too much of it. I do use computers at night time, but have my phone set to go to yellow tones after 9pm which is supposed to help sleep. I have been sometimes doing guided meditations in bed just before sleep and it seems to help me get to sleep quicker and have better quality. I just find them on youtube. They are great if your mind wanders to stressful things as you try to sleep, because they encourage you to relax while also occupying your mind. Just important not to get upset if your mind does wander, just say "that's ok" and bring it back to the meditation. The LDN has been the biggest thing for improving my sleep - although I never had huge sleep issues, I think any degree of improvement has got to be good for our fatigue symptoms.
     
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  4. AdamS

    AdamS Senior Member

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    Hi Jessie,

    Thanks for the quick reply, that's interesting, I also find that mornings are hardest. I think i've struggled to sleep well most of my life, but definitely more noticably in the years leading up to M.E onset.

    What is your current level of functioning? Are you able to work at all? I'm just trying to understand if consistent sleep can lead to improvements. My last attempt at going back to full time work meant I had to lay down on the sofa all night when I got home because I was so exhausted.
     
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  5. Jessie 107

    Jessie 107

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    Brighton
    My level of function is now not great and has got worse recently, I had to give up work three months ago and I cannot, go shopping do housework and rarely have to energy to cook. I feel ill most day's, my doctor is going to refer me to a me/cfs clinic. I would say I have about one and a half hours a day of energy to do things. I am also trying to deal with my mum who has alzhiemers and this stressful situation does me no good whatsoever
     
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  6. Dechi

    Dechi Senior Member

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    I don't sleep well, don't feel refreshed when I wake up, have trouble falling asleep and have insomnia. My therapist has given me techniques to help with my sleep, and they work, but as soon as I have a little stress, or anything that affects me, like trying new supplements, it goes down the drain. I am very fragile in the sleep department...
     
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  7. AdamS

    AdamS Senior Member

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    Really sorry to hear about your mum Jessie :(

    I also had to give up work around 3 months ago as it was too much, I thought i'd recover slowly but fear i'm just going to get worse!
     
  8. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Once I can get to sleep I sleep deep, which I'm grateful for. I don't ever feel refreshed waking up, in fact feel terrible. I sleep 7.5-8 hrs. I do all the usual sleep hygiene stuff which helped to get me to 7-8 hrs.

    Despite this I'm often laying my bed in the dark not being able to get to sleep 3 hrs after going to bed. This is normally when I've had a bad day (not moved much, had a virus, crashed). It's a rare week when I can get more than 7.5 hrs every day. I do about 15 days a month when I hit 7.5 hrs sleep or more.

    On the rare occasion I can get 9 or 10 hrs I feel a bit better but it doesn't seem to be linked to how quickly I come to in the morning or a predictor of how well I will do in the day.
     
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  9. AdamS

    AdamS Senior Member

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    Great input, thank you for sharing this. I can relate to lying there in the dark unable to get off to sleep for a few hours!
     
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  10. Plum

    Plum Senior Member

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    I had less sleeping problems when I was at 40% functioning. Since declining to 20-30% functioning I have all sorts of sleep problems. I rarely go to sleep before midnight. I regularly have nightmares. I often have problems getting to sleep and staying asleep. I am often in bed trying to sleep for 11 hours to sometimes get 7 hours sleep! I do find a very dark room helpful as well as a cool room. I also find making sure I've eaten enough before bed important.
     
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  11. PatJ

    PatJ far and free I gaze

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    This is my now standard post about what I have found to help my sleep:

    My sleep used to be like this: lose consciousness, toss and turn all night (intermittent consciousness), wake up feeling like nothing happened during the night. It was about as effective as closing my eyes and opening them again. No sense of time having passed, no sense of having slept, no dreams, just more of feeling exactly the same as when I went to bed. In my case I had no idea how bad my 'sleep' had become because the problems crept up on me.

    I've never tried pharmaceuticals for sleep, partly because I react so strongly to medications. After a lot of experimentation I've found a mixture of things that help me get a much better night of sleep:
    1) Inclined bed (head of the bed inclined by 6 inches.) I was surprised at how much this helped my sleep. It also helps to prevent nocturnal urination.
    2) Memory foam bed - the soft kind. A soft memory foam bed helps to reduce how often I wake up to change position. And, because I'm bedbound so much of the day, a comfortable bed is very important.
    3) Blocking out light for a dark sleeping environment.

    4) LDN: possibly the biggest aid to sleep although it disturbed my sleep while I was adjusting to it.
    5) Time release melatonin, (Natrol) 1mg. Regular melatonin doesn't keep me asleep, but long acting does.
    6) Nighty Night Tea with valerian
    7) L-Tyrosine before bed
    8) Magnesium before bed
    9) Iodine - at least 12mg/day
    10) Oatmeal before bed - provides a small meal to help with taking my bedtime supplements (they're easier to swallow with food), helps keep blood sugar up during the night, and helps to release serotonin for better sleep.

    11) Ear plugs - I'm a very light sleeper so ear plugs help to block out unexpected noise that could wake me.
    12) Not over-exerting - difficulty sleeping is a sign that I have pushed too much. If I stay within my energy envelope and don't over-exert then I usually sleep better.

    Each of these contributes a little to better sleep, but all of them together add up to a decent night. I can go to sleep fairly easily, and when I wake during the night I feel a little groggy and can usually go back to sleep easily. I still wake to change position at least six times per night but go right back to sleep. In the morning I feel like I've slept and sometimes have a pleasant 'I just want to lie here for awhile' feeling that was missing for almost a decade before I arrived at my current sleep cocktail.
     
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  12. Plum

    Plum Senior Member

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    @PatJ I'm very interested in your inclined bed. How much has it reduced night time toilet trips? Also, would lots of pillows do the same thing? Awesome post with lots of very helpful info for me :) Thank you!
     
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  13. PatJ

    PatJ far and free I gaze

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    I very rarely have to go at night anymore. Now my body can usually wait until first thing in the morning. Inclining the bed allows water to remain in the blood stream longer so that less makes its way into the bladder during the night. This can also help to reduce OI symptoms by increasing blood volume.

    It's important to get a 5 degree incline for your entire body (6" higher at the head of a standard length bed.) Pillows probably wouldn't work very well due to compression and an inconsistent surface, but might be useful for an experiment. I use bricks to raise the head of my bed. Foam bed wedges are also also available but more expensive.

    Andrew K. Fletcher is an inventor who promotes inclined bed therapy for helping to treat or even resolve many health conditions.
     
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  14. Jenny TipsforME

    Jenny TipsforME Senior Member

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    I find sleep hit and miss, sometimes even refreshing!

    I've written about some things that have helped me here https://tipsforme.wordpress.com/?s=Sleep &submit=Search

    More recently, getting the right amount of B vitamins and vitamin D for me after watching this video (I think about 7mins in)
     
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  15. Sandman00747

    Sandman00747 Senior Member

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    United States, Kansas
    Every morning for years I feel as if I've been beaten in my sleep by the very meanest of thugs and for the first 2-3 hours upon arising every joint and every muscle is so sore and stiff and my brain feels like cotton candy. It's very much like a sicker replay of "Groundhog Day" for me as time marches on while I limp along. Get up, go home, do it again and all that. Sleep. Ha! 5 hours max often times 2-3. Hard to believe but I've actually adjusted to this horrible way. It's got to get better! I still have hope for us all!
     
  16. trishrhymes

    trishrhymes Senior Member

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    Hi @Jenny TipsforME , thank you for sharing this video - I've just watched the whole thing.

    Fascinating - lots of useful info and I love that she's a doctor who says doctors should always listen to and learn from patients, and should never say 'it's all in you head' but say, I don't know!

    And interesting to learn about the use of B vitamins and vitamin D to help sleep, and the tie in with gut bacteria, and also having to adjust the dose after 3 months...
     
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  17. belize44

    belize44 Senior Member

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    The only decent sleep I ever get is when I take half a 10 mg tablet of Cyclobenzaprine, and even then I am vegged out most of the day. While I don't wake exactly refreshed, it does afford me some fairly decent sleep. I do however have frequent wakings and nocturnal urination, as well as sweating and then getting chilled. Thank God I am getting a new mattress tomorrow! The one I have now is utterly useless and uncomfortable as well.
     
  18. Shawn

    Shawn Senior Member

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    I am often disturbed by restless legs also and overly vivid dreams
    am
     
  19. TigerLilea

    TigerLilea Senior Member

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    The warmer the nights, the worse my sleep is. I loved the cold winter nights when it was -11C. Best sleep I've had in a long time. However, did it help with my CFS/ME symptoms? No.

    I average six to eight hours of sleep most nights, waking up usually a couple of times either to go to the bathroom or because I'm so hot that it wakes me up. It doesn't matter how good my night's sleep is, I don't feel any better for it the next day. I have not woken up feeling refreshed in 26 years now. I don't wake up feeling tired or the need for more sleep, but lack energy. :(
     
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  20. Esther12

    Esther12 Senior Member

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    My sleep is pretty much okay. Not like I wake up feeling amazing, and little interuptions to my sleep affect me much more than they used to, but other than that I don't think my sleep is any worse now than it was before I was ill.
     
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