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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Less sleep -feel better! Decent sleep -feel dodgy! What is going on?

Wishful

Senior Member
Messages
5,684
Location
Alberta
I wonder about the quality of your sleep. Maybe you managed to get more brain-cleansing deep sleep in those few hours than you normally get in 8.

I had insomnia too, but that's normal for me after a drive into town...or after clearing my driveway with my snowblower.
 

lenora

Senior Member
Messages
4,913
I wonder about the quality of your sleep. Maybe you managed to get more brain-cleansing deep sleep in those few hours than you normally get in 8.

I had insomnia too, but that's normal for me after a drive into town...or after clearing my driveway with my snowblower.
Hi Wishful,

I'm left with this ittby, bitty space but probably b/c I'm doing something wrong. Anyway, perhaps you're right, although I have to tell you that my sleep was pretty well non-existent for mos. before I was diagnosed with M.E. I was working 3/4 time, so thrilled to be back in the workforce when all this occurred. Needless to say, I never was able to return to things. It does help to hear input from others and I appreciate that you took the time to reply to me. Thank-you. Yours, Lenora
 
Last edited by a moderator:

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
With drastically shortened sleep times, I read here
that the most affected phase is the REM phase, and stage 2 sleep. It seems delta wave (stage 4) sleep is not curtailed and can even be intensified.
Depending on the timing and duration of sleep, and the number of days it is reduced, some aspects of sleep are conserved, occur sooner, or intensify, while other aspects of sleep time are diminished. For example, healthy adults fell asleep more quickly and had decreased time in NREM stage 2 sleep and REM sleep when restricted to 4 h of nocturnal sleep for multiple nights, but they had no decrease in NREM slow wave sleep (SWS) relative to a typical 8-h nocturnal sleep period

So maybe @Wishful, that's what you mean by the brain cleansing effect. I think healing is more likely to happen in stage 4 sleep (?) (Haven't got that far in figuring this out yet...) :)
 

lenora

Senior Member
Messages
4,913
Well, as long as I'm getting the healing stage of sleep, I can put up with the rest of it. I'd rather be feeling awake and useful than groggy all the time. Thanks Wishful & Wolfcub for your input. Yours, Lenora
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
So maybe @Wishful, that's what you mean by the brain cleansing effect.

Yes, the fairly recent research on how deep sleep (delta waves) pumps neural waste out through the glymphatic system (and into cervical lymph nodes, which might explain some things) caught my attention. If that waste removal process isn't working properly, it certainly should affect how we feel, and how we deal with other biological problems, such as ME.

It's nice to have scientific confirmation of the possibility that reduced sleep duration could actually improve the delta wave activity. It's at least a possible answer for this thread's question. Maybe a researcher can come up with a way to test the theory.
 

HABS93

Senior Member
Messages
485
That's very interesting. I was reading about taking vit K and B5 as a good combo for sleep. Apprently longer REM sleep when supplementing these.
For me however I feel better when I sleep 6-8 hours. Although I'm currently in the middle of weed withdrawals so I won't be sleep much for next week haha
 

lenora

Senior Member
Messages
4,913
Yes, the fairly recent research on how deep sleep (delta waves) pumps neural waste out through the glymphatic system (and into cervical lymph nodes, which might explain some things) caught my attention. If that waste removal process isn't working properly, it certainly should affect how we feel, and how we deal with other biological problems, such as ME.
That's very interesting. I was reading about taking vit K and B5 as a good combo for sleep. Apprently longer REM sleep when supplementing these.
For me however I feel better when I sleep 6-8 hours. Although I'm currently in the middle of weed withdrawals so I won't be sleep much for next week haha
That's very interesting. I was reading about taking vit K and B5 as a good combo for sleep. Apprently longer REM sleep when supplementing these.
For me however I feel better when I sleep 6-8 hours. Although I'm currently in the middle of weed withdrawals so I won't be sleep much for next week haha


It's nice to have scientific confirmation of the possibility that reduced sleep duration could actually improve the delta wave activity. It's at least a possible answer for this thread's question. Maybe a researcher can come up with a way to test the theory.
 

lenora

Senior Member
Messages
4,913
Hi Wishful,.....Thanks for the info. I'm not in a position to take anything until I get this Autoimmune Encephalitis straightened out and I'm given the go ahead by the doctors in the "know" to try Vit. K & B 5 as a combo for sleep.

I agree wholeheartedly, just from my own sleep experience very early on, that perhaps the lymph system is involved....it would certainly make sense in my case, but I don't feel in a position to add anything until this electrolyn imbalance problem is sorted out. Boy, how I wish the Researchers would really flag something instead of the usual "perhaps"....and I'm not saying that's even their fault. Things would move ever so much faster if we had that biomarker. The elusive little thing!! Keep me posted if you try adding them to your regimen and things change. Thanks. Yours Lenora
 

andyguitar

Moderator
Messages
6,595
Location
South east England
But last night I could not sleep. This was insomnia, not delayed sleep-phase.
Nothing I could do about it. I eventually slept about 5am, and got four and a half hours sleep. No fun really.

But today I have had ZERO symptoms all day long. I feel so very tired, but no symptoms.
It's lovely. I really enjoyed today.
Des this still happen to you @Wolfcub ? And how about you @Jessie 107 ?
 

Jessie 107

Senior Member
Messages
291
Location
Brighton
@andyguitar
Yes it does, last night slept for nearly ten hours, today I feel like shit.
A few weeks ago I got woken up by my daughter at 1.30 am. I didn't get back to sleep until 7.30am and all day I had no symptoms and felt ok.
Not that I want to be awake all night, way too boring 😐
 

judyinthesky

Senior Member
Messages
361
The sleep deprivation thing is interesting.
I am one of those that NEVER feel tired. I never felt tired since the onset of my pancreatic illness, which triggered the fatigue.
I notice also that when I eat carbs my sleep is less good, because my body sees digestion as exhaustion, and in return my nervous system wires. The more wired I am obviously the more shortened my sleep. I tend to fall asleep okay, if there is not too much "stimulation" around me.
I have always been a person that could function on sleep deprivation and not be moody when I got less.
I feel like there are some metabolisms with a corrective mechanism. It might not be CFS it might just be different bodies and mechanisms, but of course this is still medical mystery ground.
 

lenora

Senior Member
Messages
4,913
Thanks for your feedback @lenora I hope you manage to find something to help your own sleep issues. I feel sleep and ME/CFS have an intimate relationship somehow. But I haven't a clue what.

Sometimes -sure -it's pain or illness which disturbs sleep. But I actually sleep well and soundly. Whatever I have isn't enough to wake me up.

Now the oddest thing is I often did used to get some version of insomnia (couldn't fall asleep until early morning) but at that time I felt very well. No ME/CFS.

And when the illness began my sleep problems seemed solved. I have never slept so well for a long time. I do not take any sleep medication or even melatonin. Sadly, I even thought that brilliant sleep would help me "heal" quicker.

But the weird thing is I can feel totally "normal" the day after getting no sleep at all !! No symptoms, no crash. Just like my normal (albeit tired) self. This doesn't happen all the time, but has happened maybe 95% of the time. And the next night I will get 10 hours sleep and feel good that following day too 95% of the time. Like my normal self.

Another odd thing is when I wake up (now) remembering a vivid -even pleasant -dream, I always feel unwell during that day.

That's a whole new thing associated with ME/CFS.

It's a bit of a mystery.


Hello @Wolfcub.....I just re-read this response and it sounds oddly like one I gave to someone just yesterday. Since my last hospitalization in April, I've had the worst case of insomnia ever. I'm talking two weeks or so, with perhaps an hr. or two of sleep. Like you said, I don't feel any the worse for it, although my brain does slow somewhat. A mixture of drugs (like in the hospital, between anesthetics, different drugs, taking some away, you name it) can and does affect our sleep functions. l dread going in b/c I know what will follow.

I thought that accepting no sleep was the best thing I ever did. I had no expectations, thus didn't expect anything. Like you, and others over the years, I tend to want to sleep from 4:00 a.m. to 9:00-10 a.m. That seems to be my natural inclination. Unfortunately, the world doesn't work that way, does it? Sure I could sleep, but then I'd be even less productive.

Like you, in the very early days, I was "sleeping" all the time. But it wasn't a normal sleep at all. Even with earplugs, I could be asleep and still hear every word said, sentence uttered and I woke up exhuasted. This has changed over the years and before hospitalization, I could happily read until 2:00 a.m. and probably squeeze in 4-5 hrs. of sleep. Then there would be periods would sleep simply wouldn't come. Then it would pass and I could sleep again. I don't behave in strange ways....for me, it's simply a normal thing. One thing that will/has changed the process is hospitalization. I wish I could avoid it...but!!

I hope you're feeling stronger and are able to continue your walks deep into the woods or forests. I can smell them....! Yours, Lenora.
 

lenora

Senior Member
Messages
4,913
The sleep "hack" is not sustainable in the long term, at least for me, I found out. I recently started a work where I have to wake up at 8 am every morning. This means I will get ~5 hours max sleep per night in weekdays due to delayed sleep onset and poor sleep in general.

On Monday, which is the first night with less sleep, I usually feel pretty great. After that my health begins going downhill as the week progresses and towards the end of the week, I actually end up feeling worse than baseline due to progressive nights with little sleep. Obviously I then get a chance to sleep long on Friday and somehow I actually wake up feeling much better on Saturday. But then again, after the second night of longer sleep I feel worse on Sunday :bang-head:. Then the same cycle repeats, next Monday is again better with less sleep.

What do I make of all of this? It seems that for me the improvement is just from changing the sleep pattern, which apparently gives enough of a jolt to push my body temporarily away from the usual sickness state. But consecutive nights with little sleep don't work, so it's not the reducing of sleep itself that helps...

Jes, may I ask what your job is? I agree that a fulltime job would be very hard to sustain. Is any reduction of hours possible?

It's impossible to force ourselves to sleep, perhaps the best that can be done is to take naps as and when we feel we need them. e.g. I can go for long periods of time with no sleep, (and then this has happened 3 times now), I'll hold a hot cup of tea in my hands and suddenly I collapse, usually over my computer keyboard. I have no warning, it just happens.

Others will confirm that they receive e-mails from me filled with one or two keystrokes on my computer...again, I've fallen fast asleep for perhaps 15-20 minutes. I count all of this as sleep (& new computers!!). I know it's not normal sleep, but no doctor has been able to explain it nor have the clinics. Oh, I take that back, b/c of other illnesses (neurological) damage has been caused to the sleep center of the brain. This won't go away. To be honest, I have no idea what my life is from day to day and that's how I've had to live for over 35+ years. Fortunately, I wasn't the main breadwinner in our household. I know that others haven't been as fortunate and I bear that in mind...always. Yours, Lenora.
 

judyinthesky

Senior Member
Messages
361
Just to add that this is still happening to me after turning from mild to severe.
I wanted to ask you @Wolfcub - how was this before the illness. Were you one that was happy on sleep deprivation or not? As in tired but happy?

I like the theory about crashing from the good day (following the sleep deprivation) on the next day or afterwards. To me that usually means after two days. Which in my particular case now means another okay day before torture day.

Before I got severe I think it was key to not physically overdo it on the good days.
But now too many crashes.
The good sleep deprivation days are also less wired days.
Which makes me think: if this is an autonomous nervous system issue, what if the nervous system just is too tired to be wired?
Would that be too simple? ;)
I am thinking that because I had another occasion when I was less wired at the beginning of my illness (which started with 6 months of wiredness, tired came much later!), which was a jetlag! I felt better!

Mind you, on the good days I still feel shitty in the mornings. With depressive rumination which is also wiredness for me. But much less so.
Another point for the depression theory x
 

Marylib

Senior Member
Messages
1,155
I have no idea what is going on but it's quite common. Sometimes I just decide not to bother and have a decent day because of it and sleep well the next night. You do have to deal with being a zombie and prepare to phase-out, but not sleeping can feel just as bad. Thing is though, this is a time-limited experiment, because not sleeping can have some really bad consequences. To me, sleep reversal is just impossible. Living at night is ... horrible.
 

Booble

Senior Member
Messages
1,397
Last night I slept like a rock. Didn't move an inch. So much so that I was alarmed by it when I did wake up and made sure I switched to the other side-- which invoked a little woozy/dizzy.
I ended up sleeping about an hour or to longer than normal (after going to sleep on the early side).
Before I got out of bed I was excited about catching up on extra sleep......but no.......I was woozy on getting up (which is NOT normal for me, even when I'm tired) and my left side of head is all "blocked" feeling. Odd since my deep sleep was laying on my right side so that is the side that should feel clogged.

Ugh -- I hope this clears up today. I'm assuming sinus and ears are involved but but the whole upper left side of head feels off. Not sore....just ...pressure (?)

Anyone have this kind of thing when they sleep harder and with less movement than normally?
 

Viala

Senior Member
Messages
639
It happens to me as well sometimes when I go to bed late and don't have enough sleep. Once I woke up around 4:30am after four hours of sleep and I felt perfectly fine. No pain, no fatigue, clear mind, energetic, as in being completely healthy. It was too early to get up so I decided to stay in bed and observe, as time passed I could watch how it changed back to pain and fatigue within two to three hours and my only activity was staying awake.

It is very interesting why this happens, maybe the answer is right here. It also gives hope if we are only couple of hours away from a complete recovery. I usually sleep pretty well.
 

lenora

Senior Member
Messages
4,913
My neuro thinks I may be having migraines, but I think it's just the normal sinus pain (allergies) aggravated more and more each year.

I finally broke down and took a daytime Sudafed....and everything has stopped. The eternal coughing, bad headache, eyes problems...and I feel better than I have all summer. I also take quercetin & bromelain, have for years, but they don't appear to help.

The big problem is what decongestants can do to our mouth and teeth. I use biotin, but it really doesn't help much. Dental problems are expensive, I can assure you. So if anyone has any solutions, please let me know. On the other hand, I'll happily trade a dry mouth, dry eyes, etc., for the joy of not have the allergies.

I can get by on very little sleep if I have to. Thus, if I awakened at 4:30 a.m., I would pop out of bed and busy myself on my computer and things of that nature. Many nights have passed without me having any sleep, weeks even. No, it's not the way I want things to be, but hey, that's the way they are. I've tried everything and nothing seems to work. Oh, sleeping pills will for a night or two, but nothing works on a consistent basis, including melatonin and other supplements, vitamins and/or herbs. I've had brain surgery and I'm sure it's all tied in.

I really hope you find some relief b/c I wouldn't wish this upon anyone. Take care. Yours, Lenora.
 
Messages
42
Sleep deprivation is actually a very well-known mood booster. It doesn't work in everyone, but it is particularly effective in people suffering from variations of depressive disorders. Note that you don't have to be depressed to experience the mood boost, but it is most well studied in the context of depression.

This isn't relevant to the cases discussed here, but sleep deprivation can also be a trigger for manic episodes for this reason. The power of the sleep deprivation mood boost isn't fully understood, but it is quite well known.


Obviously, it's impossible to capture the effects of sleep deprivation for long periods of time. Eventually the lack of sleep causes more issues that overwhelm any temporary mood boost.

However, one option could be to try chronotherapy. Moving your sleep time and wake time earlier in the day by a few hours might capture some of the benefits without requiring sleep deprivation. An easy target might be to aim for a bed time that allows you to wake up before sunrise, then to expose yourself to the gradual brightening of the outdoors. It can take some time to adjust the sleep/wake cycle, but given your response it might be worth trying.