ME/CFS and the Change of Seasons: How Does This Affect You?
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If I'm so tired, why does sleeping hurt?

Discussion in 'Sleep' started by Wolfcub, Jun 16, 2018.

  1. Wolfcub

    Wolfcub Senior Member

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    I am wondering if anyone can come up with any ideas.
    I sleep well....I wake up feeling rotten, shaky, sick-ish, palpitations, disconnected, upset, restless and general malaise, plus no improvement in energy. Like I have slipped back a lot.
    That's a good 9 hours sleep with no interruptions and even a decent kind of dream, and I sense -a deep sleep. Healthy and good.

    I sleep less, maybe 6 hours or 6.5 hours at a stupid time of early morning to a later time of morning, and wake up feeling a little better.
    Yet I will be so tired that day. Tired is better than feeling "funny turns" all day or at least for the first 5 hours of the day.

    Sometimes I'm slightly scared to go to bed because of feeling bad the better I sleep. I stay up. It is too weird and freaks me out somewhat.
    This never happened before I got initially unwell nearly 3 months ago. Then how I felt was directly related to how well I had slept. I always loved sleep and whatever was bugging me, a good sleep cured it most times.

    When I was at my worst 2 +1/2 months ago feeling really ill, if I stayed up all night I could feel normal the next day, and able to eat good food three times a day. Yes exhausted but happier and A LOT more steady.

    What is this all about? Is it some kind of adrenal malfunction?
     
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  2. Runner5

    Runner5 Senior Member

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    Have you had a sleep study done?

    I had a similar issue for awhile but it was a medication side effect.
     
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  3. Judee

    Judee Senior Member

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    I used to get that feeling if I ate a lot of sugar before lying down. Also my doctor had me on things like T3, Iodine, and Dhea that I now feel were too stimulating for me. Mostly since I weaned off the later, my sleep doesn't make me feel worse afterwards. It took me a while to realize that I lost that issue and a lot of other bad symptoms too from dropping those things from my protocol.

    At the time, I even did an internet search about feeling lousy after sleep. Mine were mostly after naps so that is what I searched. You can try the internet search too to see if that gives you any more ideas.

    Don't know if those apply to you in any way but thought I'd mention them. For me I think it was adrenal/sugar balance issues possibly.
     
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  4. valentinelynx

    valentinelynx Senior Member

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    Yes, a good long sleep usually makes me feel worse. A short (too short) sleep is better. Pain in particular is exacerbated after a good long sleep. As is malaise. I was of the impression that this is a common symptom of ME/CFS. "Unrefreshing sleep" is one of the common criteria used. Although, this is not just unrefreshing sleep. Perhaps it is "post-non-exertional malaise"? :p
     
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  5. Moof

    Moof Senior Member

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    Me too, I have to make sure I don't sleep for too long. I have my best energy and least symptoms when I don't sleep at all, though of course that's not sustainable beyond the following day. The worst time to sleep starts between 6 and 7am; the more sleep I have after that time, the worse I feel. I try to make sure I don't sleep beyond 7, even if I'm not actually out of bed.
     
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  6. Diwi9

    Diwi9 Administrator

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    I've been curious about this too and wonder if particular brain activity during sleep sets off a sort of PEM. While the process is restful and restorative and necessary, for people with ME/CFS, perhaps it is relying on metabolic processes that deplete certain resources. This is pure speculation, but putting it out there.
     
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  7. Pink

    Pink Senior Member

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    Yes I get this too ; I feel so heavy if I go back to sleep by day.
    But if i dont sleep enough i crash or get very anxious.
     
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  8. It could be related to adrenals. Sounds like it might be a combo of hypoglycemia and electrolyte deficiency.

    As an experiment, you could try eating a small balanced meal or snack maybe an hour before bedtime. Balanced means it contains protein, carbs and fat, so not just an apple.

    You could also try some magnesium before bedtime.

    If either one of those helped, that would be a clue.
     
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  9. edawg81

    edawg81 Senior Member

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    I feel the worst when i sleep well, and the best if i dont sleep. This has been going on since my onset 2 years ago. One thing that i found interesting a dr once told me patients with depression feel better temporally without sleep. Scientist are now hypthesising depression may be linked to neuro-inflamation. So my hypothesis is that sleeping strengthens the immune system and increases cytokine production leading to more neuro inflamation. Overall i guess improving sleep long term would benefit mecfs so I am focusing on that. But i definitely feel my best if i haven’t slept well for a day or two. What a bizzare illness this is.
     
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  10. Wolfcub

    Wolfcub Senior Member

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    It's a good idea to try that @caledonia I experimented (at first) with a tiny complex carb (banana)snack as soon as I woke up just in case it was a blood sugar thing. It didn't help at all, but that was weeks ago when I was at my worst and my queasiest! Boy -that snack was hard to do as soon as I opened my eyes!

    Next trick....I tried a bedtime snack and had some avocado on Ryvita crackers with a few chick peas on the side. Yummy snack! Then tried a soft boiled egg with ryvita crackers with a little butter. Another yummy snack! (You can probably guess by now that when I don't actually feel queasy I love my food! :D
    Now I can't pin down if that made a difference the next morning or not. I think I would have definitely remembered if I had felt normal. But it might have made some tiny difference....not sure...

    I haven't experimented with an actual Magnesium supplement yet. I do take an A-Z multi-vit and mineral tablet every day usually after breakfast. A lot of foods I eat have Magnesium. But I should maybe try a supplement when I figure out how much is okay to take.
     
  11. Wolfcub

    Wolfcub Senior Member

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    Wow....so it seems lots of people get this weird sleep-thing. I thought I was on my own with it. It is so strange and only started after I got this virus end of March. It never happened like that before.

    There are some interesting theories (above)
     
  12. Pink

    Pink Senior Member

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    But how long can we go on minimal sleep without having a worse crash?
    I feel like sleep is a catch 22
     
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  13. Wolfcub

    Wolfcub Senior Member

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    No I haven't had a sleep study done.
    I am usually a happy sleeper relaxed in my own environment. But if I were in a place I didn't know -a laboratory situation, I know I would not even be able to fall asleep and would probably only end up dozing off now and then anyway. I would be on edge all night. I sleep badly in unknown environments generally. The only way I could do that is go without any sleep at all for more than 36 hours.
    That would be hard. I could do it but it would be hard on me.
     
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  14. Wolfcub

    Wolfcub Senior Member

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    Yes I get that. It feels like a "quick fix" for me to just get a few hours. I always needed at least 8 hours and always woke up fine. Now it's become so strange and I don't understand it.
    That sleep deprivation might help a little bit temporarily but it would be nice to get to the actual answer. None of us can keep doing that every night.

    Last night I slept 4am and woke naturally at 10am (no way long enough) and had a much better day today. But I know I can't do that every night. Tonight my body will want to make up for it by getting 8 1/2-9 hours I bet. We'll just have to see what happens tomorrow.

    Oh....and nothing feels nicer than when I get to bed, tuck in and lie there. Unconscious in minutes, but those minutes feel so nice.....pity it's not as nice at the other end.....
     
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  15. itsme

    itsme

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    Even though you don't feel well in the morning I am convinced that your body needs the sleep and will one day reward you for letting sleep happen. In my opinion unrefreshing sleep is more of a morning problem not a sleep problem:
    I have trouble falling asleep at night even if I am very tired and I wake up early. I cannot go back to sleep and have to get up, usually moving from bed to the sofa and lying down there.
    During times when work is actually too much and I come home wasted, I sleep in the afternoon (at the moment I "watch" world championship soccer games that make me fall asleep very quick), and after these naps I feel refreshed for a few hours.
    Get better soon!
     
  16. Hip

    Hip Senior Member

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    If you read the CDC Fukuda criteria, or the IOM criteria, you see that unrefreshing sleep is a classic symptom of ME/CFS.
     
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  17. I have to take a lot of magnesium - 2800mg of elemental magnesium divided into 4 doses throughout the day to keep from having muscle twitches, restless legs screwing up sleep, and heart palps.

    An average magnesium deficient person needs 300-400mg.

    The rule of thumb is to start low and gradually increase over several days until your stools get loose, then back off a bit and that is "your" dose. Alternatively, you can gradually increase until your deficiency symptoms like heart palps and whatever might be going on during sleep go away.

    If you get too much, symptoms are diarrhea, nauseous/sick type feeling, and metallic taste in the mouth.

    There are various forms of mag. Mag oxide is supposed to be the hardest one to absorb, so other forms like mag citrate, malate, glycinate, taurate, etc. are better.

    You may or may not be able to derive enough magnesium from food due to whatever changes in your body. I can't, so I supplement. I do mag glycinate.
     
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  18. Diwi9

    Diwi9 Administrator

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    The way our symptoms are defined by these criteria are so poor in their description, it really makes us sound like whiners. Like @Wolfcub, it's so much more than "unrefreshing"...surprised they didn't call it "post-sleep malaise"!
     
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  19. Wolfcub

    Wolfcub Senior Member

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    Yes you're right @Diwi9 it isn't just "unrefreshing sleep". I've had that before but didn't make me feel the same. As you say it is a whole different thing more like post-sleep -malaise. Good description!

    Last night I slept until I was ready to wake up naturally and it was for 8+1/2 hours which would normally be fine, and result in good energy. Now I felt great for the first 45 minutes or so, quite decent....then even strolling in my garden with my morning drink had me needing to sit down (and it's not a big garden)
    Just had to give the Crow his little treat....
    Then I felt like something had completely pulled the plug out of me and was like that the rest of the day.
    Yesterday on 6 hrs sleep I managed a short walk and get a piece of deadwood in, cut it up, and stack it. And felt not too bad for all that. In fact the exercise didn't feel bad at all.
    Now whether that is PEM or whether it is connected with the longer (healthier?!) sleep....I don't know
     
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  20. Moof

    Moof Senior Member

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    Any form of magnesium, and any lithium supplementation, gives me horrific RLS – as well as my legs, I get it in my arms, neck, back, and even my chin. 'Restless' doesn't really describe it, it's so acutely painful that I don't know where to put myself and morphine-based painkillers have no effect at all. The lithium was easy to identify, but with the magnesium it took me a long time to work it out; turned out it was in a combined supplement and I hadn't spotted it.

    Only posting in case anyone else develops very severe RLS but is finding it hard to work out why. I wouldn't wish it on my worst enemy!

    For me, the only way is to schedule my worst days for the least worst time! So if I have anything to do, I make sure I get no more than five hours' sleep and am awake by 6am. I then allow myself to catch up on sleep, and feel like death dug up as a consequence, on days when it's less inconvenient. There doesn't seem to be any other option...
     

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