Something is going on when we sleep...

[Hopeful1976]

So I woke up at my usual 3am last night, feeling wide awake and not too bad, and began thinking about something happening when we sleep as affecting/causing m.e... weird I know, but bear with me.

If i manage to go back to sleep, I wake up feeling awful m.e symptoms that last into the day... we all seem to suffer that strange phenomena that when we dont sleep well, we feel better; when we sleep well, we feel crappy.... putting things together, is it something in sleep that is affecting us? Something in a part of sleep (REM, deep?)? A hormone(s)? I'm no scientist, but my brain works with possibilities, and this one came me last night at 3 feeling ok, and then at 6 when I woke feeling so groggy and achy again.

Anyone have any thoughts/opinions @HTester @Janet Dafoe (Rose49)

 

[lauluce]

So I woke up at my usual 3am last night, feeling wide awake and not too bad, and began thinking about something happening when we sleep as affecting/causing m.e... weird I know, but bear with me.

If i manage to go back to sleep, I wake up feeling awful m.e symptoms that last into the day... we all seem to suffer that strange phenomena that when we dont sleep well, we feel better; when we sleep well, we feel crappy.... putting things together, is it something in sleep that is affecting us? Something in a part of sleep (REM, deep?)? A hormone(s)? I'm no scientist, but my brain works with possibilities, and this one came me last night at 3 feeling ok, and then at 6 when I woke feeling so groggy and achy again.

Anyone have any thoughts/opinions @HTester @Janet Dafoe (Rose49)

I think abot this ALL THE TIME. The effects sleep has on me are so obvious that I just can ignore them. It seems that a full night sleep isn't particulary damaging, it doesn't worsen my symptoms, but, as it's expected in ME/CFS, it doesn't restore my energy and awareness level either. On the other hand, when I sleep for one, two or three ours, the results are disastrous, as they make me feel dizzy, lightheaded, and it causes nausea, brain fog, muscle weakness, accelerated cardiac rithm, etc. This symptoms manifest at the exact same moment I WAKE UP, standing up or getting out of bed isn't required. So the thing is, I'm completely sure that something happens while I sleep, I believe that in my particular case it's some form of dysautonomia, in which the changes that occur when we go to sleep (decreased blood presure, cardiac rithm and output, etc) do NOT PROPERLY REVERSE upon waking up. What do you guys think? I must add I've got confirmed POTS, yet my pots has improved greatly over the years while this issue with sleeping has not.

 

[lauluce]

So I woke up at my usual 3am last night, feeling wide awake and not too bad, and began thinking about something happening when we sleep as affecting/causing m.e... weird I know, but bear with me.

If i manage to go back to sleep, I wake up feeling awful m.e symptoms that last into the day... we all seem to suffer that strange phenomena that when we dont sleep well, we feel better; when we sleep well, we feel crappy.... putting things together, is it something in sleep that is affecting us? Something in a part of sleep (REM, deep?)? A hormone(s)? I'm no scientist, but my brain works with possibilities, and this one came me last night at 3 feeling ok, and then at 6 when I woke feeling so groggy and achy again.

Anyone have any thoughts/opinions @HTester @Janet Dafoe (Rose49)

I think we should both ask for a sleep study! and post the results here

 

[YippeeKi YOW !!]

Not sure if this will be helpful, and right now am too overloaded with stuff that needs to get done, and too under-loaded with energy and focus to find the original article I read on this, but to the best of my ability, here's the nutshell: during a certain level of sleep, I believe very deep sleep, there's a chemical cleanser released in the brain which cleans up all the accumulated detritus of the day/week/ whatever, leaving the brain free of various toxins and damaging protein bits or other nano-particulate matter.

In the absence of this, the brain will inevitably slow, clog, and deteriorate, much the way an engine clogged with dirty oil will gradually slow and burn itself out.

A lot happens in our sleep that's still a deep mystery to the medical and scientific community. It's one of the reasons I think their tampering with neurotransmittors, etc, in the prescribing of anti-depressants and anti-anxiety drugs along with other intruders, is ill-advised. Most of the medical community will readily admit that they have NO idea how the deeply complex and intersticed functions, transmitters, and neuro chemicals of the human mind work.

 

[JES]

This was just recently discussed in a thread here. The problem is, as @YippeeKi YOW !! mentioned, scientists in general have a poor understanding of sleep. Nobody knows why some people need more sleep and others need less. They haven't even come up with a non-addictive sleep pill despite 50 years of trying. If sleep is THE problem in ME/CFS, I'm afraid we are not close to the solution. It would be interesting to see someone volunteer to try a short sleep cycle for a longer period and see if the benefits still persist. I usually get so tired after a 3-5 hour night that it's difficult to imagine doing this for consecutive nights.

 

[Wolfcub]

This is a totally fascinating subject and thanks for posting @Hopeful1976

I would really REALLY like to know the answer to this because I too believe it holds a key to our understanding of ME/CFS...or at least to some of the things caused by ME/CFS perhaps?

From what I have learned so far, I don't think it's everyone who feels better when sleep-deprived. Some are much better with longer sleep.
But I know sleep deprivation actually helps me short-term. But it's impossible to chronically sleep-deprive as that makes things worse.
But....I am beginning to wonder if it's "hours slept" rather than deprivation which is at the bottom of it. For instance, if I sleep 6 hours I will feel better than if I sleep 7 or even 7 and a half. Anyway I haven't a clue.

Yet, I have slept 10-11 and felt better......4-5 and felt better. 8-9 and felt much worse.

I often wonder if it is connected to REM cycles. Just because of my own reaction to waking up immediately after an REM cycle and clearly remembering dreams (feel like I've come from another planet)

 

[YippeeKi YOW !!]

I often wonder if it is connected to REM cycles. Just because of my own reaction to waking up immediately after an REM cycle and clearly remembering dreams (feel like I've come from another planet)

Right there with 'ya. I think that it's the quality and depth of sleep that counts, not just the hours logged.

It's possible that feeling better on 4 hours of sleep or even less has more to do with the depth of that sleep than with the shortened hours, and feeling like crap after 7 or 8 or even 9 or 10 hours of sleep might be because we were just sort of coasting along on the outer edge of good sleep and never really dropped off.

It's such a mystery. It fascinates me, endlessly.

 

[Matthew_2]

I think non-restorative sleep is the biggest clinical factor that worsens ME/CFS symptoms. I can recall one study of Fibromyalgia patients that noted a hypervigilance during sleep. I know in my own case that when I wear a heart rate monitor at night and look at the graph the next day, there are noticeable frequent spikes in my heart rate that are perfectly correlated with movement that my fitbit watch records as arousals. So, even though for most of these arousals, I am not conscious of waking up, my sleep is being disrupted. Furthermore, I notice these spikes in adrenaline happen more frequently during REM phases, which constitute the latter half of our sleep cycle. What is fascinating is that my heart does not do this at any other time of day. If I am sitting in a chair for hours, or walking around the house, or resting on the rug in meditation, my heart does not spike like this. It is clearly an autonomic process that is specific to sleep.

 

[gregh286]

I've been saying this for years.
More sleep =greater Cfs symptoms
I've figured out the perfect balance is 6 hours.
As you say if you wake at 3am and stay awake you have an ok day....tired but low CFS. Fall asleep again and you are asking for a disaster.
Best CFS cure I ever had still is jetlag.
Cortisol antibodies ?
Lowered immune function?
Anyones guess.

 

[Wishful]

If sleep is THE problem in ME/CFS,

I don't feel that it is. I've had good sleeps, and poor sleeps, and long sleeps and short sleeps. None of that seems to correlate with my symptom severity. I'm sure that it does for some people (even inversely for some), but I think it's more likely just another factor that affects ME differently in some people. FWIW, my ME symptom severity doesn't seem to correlate with my sleep quality either: bad ME doesn't seem to change my sleep.

I think my sleep is generally restorative, it's just that my 'fully restored by sleep' level is crappy due to ME.

 

[Wolfcub]

but I think it's more likely just another factor that affects ME differently in some people.

Yes I agree. We cannot generalise. As we know, there are many sub-sets of this disease, and what helps one person can be harmful to someone else.

 

[Wolfcub]

I usually get so tired after a 3-5 hour night that it's difficult to imagine doing this for consecutive nights.

Yes exactly. I have kept it up for a few nights consecutively and found that I lost the initial benefit, and just became really very overtired which was doing me no good. So I let myself sleep naturally again.

The key I think being that -I lost the initial benefit.
I admit that I may not have run the experiment for long enough.

 

[borko2100]

Same here. The longer I sleep the less energy I will have during the day and vice versa. Initially this seemed very strange to me. For a while I even thought I was imagining things, because of how unintuitive the idea is. That's why I started logging my sleep duration and energy levels. Hereunder is a scatter plot for the last 50 days:

As you can see, on my best days (4 on the energy scale) I always slept under 10 hours. Furthermore, all days where I slept less than 6 hours were good days (>3).

If I could I would always sleep 6 hours or less. Unfortunately it's not that easy. Even pre-ME I used to sleep 9 to 10 hours. Waking up after only 6 hours of sleep is extremely difficult for me. And If I keep doing this for a few days in a row I accumulate sleep debt, which causes me to sleep for very long whether I want to or not. Nevertheless I am still trying to do it when I can.

Anyway, this is a very interesting phenomenon. It seems quite common in ME/CFS, unfortunately there's neither an explanation or research into it.

 

[gregh286]

Same here. The longer I sleep the less energy I will have during the day and vice versa. Initially this seemed very strange to me. For a while I even thought I was imagining things, because of how unintuitive the idea is. That's why I started logging my sleep duration and energy levels. Hereunder is a scatter plot for the last 50 days:


View attachment 35505

As you can see, on my best days (4 on the energy scale) I always slept under 10 hours. Furthermore, all days where I slept less than 6 hours were good days (>3).

If I could I would always sleep 6 hours or less. Unfortunately it's not that easy. Even pre-ME I used to sleep 9 to 10 hours. Waking up after only 6 hours of sleep is extremely difficult for me. And If I keep doing this for a few days in a row I accumulate sleep debt, which causes me to sleep for very long whether I want to or not. Nevertheless I am still trying to do it when I can.

Anyway, this is a very interesting phenomenon. It seems quite common in ME/CFS, unfortunately there's neither an explanation or research into it.

Yea this is where I hit sweet spot at 6 to balance deprivation and energy. At start of ME I would sleep 12 hours with amiltrip and wake up dead. It's so counterintuitive to us. Body want to sleep on but I really have to force myself awaken.
Used to go on stag do weekends....hardly get any sleep and was tired but no CFS. Talk about a hard explanation that. You normally keep things like that to yourself....they'd put you away.

 

[lauluce]

What about the recent study showing that CFS flows trough the brain during sleep? Could that be what fails? https://forums.phoenixrising.me/threads/something-is-going-on-when-we-sleep.78388/
By the way, I also usually feel better, yet more sleepy, when I sleep less hours at night, say, 6 or 7 hours instead of 9 or 10.
EDIT: I put the wrong link to the article, this is the right one: https://www.sciencedirect.com/science/article/pii/S0925443915003142

 

[Rufous McKinney]

I think non-restorative sleep is the biggest clinical factor that worsens ME/CFS symptoms.

As soon as I started having pre-menopausal problems going to sleep, and some issues with insomnia when i had to travel for work: EVERYTHING got much worse at that point.

The lack of repairs, and the lack of replenishment of the Yin (chinese reason)...in my case, took something that was just sort of a nuisance and it started to take over my life.

 

[Wolfcub]

I wonder if it's just one of the signs of dysautonomia; i.e. that the parasympathetic isn't functioning properly?

 

[Insomniac]

I feel better when I sleep more.

Very few hours of sleep make me worse.

If I have to get up for a doctor's appointment at 8am and fall asleep at 5am, having just 3 hours is worse than not sleeping at all.

And I can't understand why I feel a million times worse after waking up than before going to sleep.

The reversal of the biological clock on top of it drives me crazy.

 

[knackers323]

What about the recen study showing that CFS flows trough the brain durinng skeep? Could that be what fails? https://forums.phoenixrising.me/threads/something-is-going-on-when-we-sleep.78388/
By the way, I also usually feel better, yet more sleepy, when I sleep less hours at night, say, 6 or 7 hours instead of 9 or 10.

@lauluce what study are you referring to?

Your link just takes us back to this thread

 

[YippeeKi YOW !!]

@lauluce , @knackers323 , @Wolfcub

I can't find the original article I read regarding the brain cleansing itself during sleep, I think it was in ScienceDirect, but here's another, covering the same territory, from NPR:

https://www.npr.org/sections/health...sweep-themselves-clean-of-toxins-during-sleep