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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
Why do I sometimes get a "bad night" and can't sleep? I have absolutely no idea.

I had the same problem. Eventually, by paying attention and verifying with my journal, I identified quickly-digested carbs in the afternoon as one trigger for the insomnia. Whole-grains for my early afternoon meal: sleep normally. Refined flour (wheat, rice, corn), or some sugar: wake at 2 AM, not at all sleepy.

A few years ago, physical exertion past 2:30 PM also started triggering insomnia. No more evening walks. :( Again, it took a while to notice the correlation. Recently I did do some exertion in the evening, and slept okay, so maybe it's passed. More experimentation needed. I just hate the thought of intentionally causing insomnia. :wide-eyed:

You may have different triggers for your insomnia, but I expect you'd find one if you recorded everything you did. Maybe it's reading/watching humour or horror, or talking to someone, or thinking hard about something. There are all sorts of possible triggers that we don't realize we are encountering at the time.

But....why would I feel so much better on that day when I slept little the night before?
That is the issue which I can't figure out.

I don't know if that has a rational answer.

Someone with a good understanding of the biochemistry and biophysics of sleep could probably offer you a list of possible rational explanations. A lack of sleep would cause multiple biological changes which could reduce some symptoms. Sometimes a change that should make you feel worse actually triggers a response that provides a stronger counterresponse. Also, as Mary suggested, whatever causes your insomnia could be causing the later improvement. I'm sure there is a rational answer, but finding it would be difficult.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
What is even more curious, the improvement I get from a bad night continue slightly over to the next day after the following night, even if I sleep better the night after.
This is exactly what happens to me too, if I go a whole night completely without sleep. I will feel of course, terribly tired which comes and goes in waves through the following day, but generally I will feel very much healthier.
Then usually the next night I will sleep 10 hours straight through, sometimes 11. And most often will feel better that next day also.
So weird.
 

panckage

Senior Member
Messages
777
Location
Vancouver, BC
I have something like this where I generally feel better when my sleep quality appears worse. In my case, before I had ME, I would take 1hr+ to fall asleep, maybe awake during the night as well as wake up 2hrs before I wanted unable to get back asleep

OTOH my "best" sleep happened when my ME symptoms were the worst. It was the only time in my life I could fall asleep within 30mins and stay asleep the whole night!

So for me it seems the sleep "quality" is caused by the severity of my ME symptoms
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
@panckage I can relate. When I first became unwell, I noticed I was sleeping very much more deeply and soundly and longer than usual. Sometimes I even noticed that during the night I hadn't appeared to move one inch. When I got out of the bed, it looked almost as if no one had slept in it.

I was sleeping so soundly I thought....ohl, I should heal quickly from this....or, what can be so wrong with me, as I am sleeping so very well?
 

manasi12

Senior Member
Messages
172
I wish I had an answer to this. It's been happening to me now for 20 months (the length of time I've had ME/CFS.)

It seems if I have a bad night, very few hours of sleep (4-5) I end up feeling NO SYMPTOMS the next day. I feel totally and absolutely NORMAL !
Yes I feel like I haven't had enough sleep, and can hardly keep my eyes open after dinner in the evening.
But I feel wholesome, normal. (apart from the tiredness.) My mind is also in a better condition. I feel much more positive. I have a healthier appetite, and even walking up a slight hill doesn't make me feel bad.

Of course I can't manage to live like that every day! Who would want to?

We all need sleep. I need sleep !

When I sleep naturally, and "healthily" I will sleep through 8-9 hours without waking. And feel quite good when I wake. I am pretty attuned to the natural feel of that, and that I wake up when my body is ready.
(Wow....in the past of my life that would have made me feel MUCH better the next day!)

But the rest of the day , symptoms will often creep in, and I feel much more exhausted just doing small things.

I don't suffer from sleep apnea. I don't have acid reflux, or any sleep problems as far as I'm aware.

I really wish I knew what's going on. It sounds so paradoxical, and I have no clue as to the cause of all this.

Please -if anyone has any ideas -scientific ideas....anything, help me out here will you? :)
I had experienced same thing in first 2-3 years of illness. If I slept badly, I used to feel much normal, had better balance and less POTS symptoms and most importantly much clearer head. I used to wonder if insomnia causes rise in catecholamine level as @Hufsamor has speculated.
As now I'm much worse, I don't experience this as I think I don't any catecholamine reserve or whatever it was. But it was pretty decent to feel somewhat normal.
 

lenora

Senior Member
Messages
4,913
I wish I had an answer to this. It's been happening to me now for 20 months (the length of time I've had ME/CFS.)

It seems if I have a bad night, very few hours of sleep (4-5) I end up feeling NO SYMPTOMS the next day. I feel totally and absolutely NORMAL !
Yes I feel like I haven't had enough sleep, and can hardly keep my eyes open after dinner in the evening.
But I feel wholesome, normal. (apart from the tiredness.) My mind is also in a better condition. I feel much more positive. I have a healthier appetite, and even walking up a slight hill doesn't make me feel bad.

Of course I can't manage to live like that every day! Who would want to?

We all need sleep. I need sleep !

When I sleep naturally, and "healthily" I will sleep through 8-9 hours without waking. And feel quite good when I wake. I am pretty attuned to the natural feel of that, and that I wake up when my body is ready.
(Wow....in the past of my life that would have made me feel MUCH better the next day!)

But the rest of the day , symptoms will often creep in, and I feel much more exhausted just doing small things.

I don't suffer from sleep apnea. I don't have acid reflux, or any sleep problems as far as I'm aware.

I really wish I knew what's going on. It sounds so paradoxical, and I have no clue as to the cause of all this.

Please -if anyone has any ideas -scientific ideas....anything, help me out here will you? :)
Y
You are not alone, this "sleep paradox" has been discussed before and you'll probably find some of the threads when searching with keywords "sleep deprivation". What is even more curious, the improvement I get from a bad night continue slightly over to the next day after the following night, even if I sleep better the night after.

I thought it could be related to head positioning and the recent structural abnormalities found in ME/CFS. I then observed one night where I laid wide awake for the same hours as I normally would have slept, but still noticed the same improvement. It seems the improvement does not relate to how many hours I spend in bed, but how many of those are sleep.

Anyway, to me the key question here is, are there any possible long-term benefits to derive from this, or is this yet another "temporary remission" method? I'm afraid it's the latter, since the first obstacle would be to adapt into sleeping 4-5 hours every night and the second issue is, the benefits from a short night might no longer be present if your brain gets used to sleeping that way.[/QUOT

No, sadly you aren't alone. You won't want to hear this, but I've been suffering with ME/CFS for approx. 34 yrs. and have had sleep studies, (waste of time & money, as far as I'm concerned), have no acid relux, no sleep apnea, none of the "culprits" so often cited, and have tried every sleep med in my neurologist's array.

I agree that I actually feel better with no sleep, although I'll tend to pass out after a few days of suffering insomnia, sometimes with a cup of hot tea in my hands. We all seem to be the same in that regard, thus the reason I keep going back to research for the answers. Please bear in mind that I have a no. of neurological conditions going on that are contributing to it (I have no doubt), but whether it's about SM/ACM/or ME/CFS the problems all seem to be the same. My neurologist tells me has seen a trend in all his patients with neurological complaints...no one seems to escape. I put it down to so many things over the years. Now I just accept it as part of who I am and have no doubt that researchers will have the answers for you someday. It will be too late for me, but I put so much money into research...the answers to all of this will be someday be found there. I urge all of you to put any spare cash (& I realize that money is very tight for some of you) behind research if you have any hope of overcoming this...whatever it is!! Yours, Lenora
 
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Wolfcub

Senior Member
Messages
7,089
Location
SW UK
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.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
There has to be some reason why this happens @Jessie 107 if it's happening to you too. If I had the scientific knowledge, it would be interesting to analyse the whole sleep pattern to see what could be found. I doubt if an average sleep lab would know or pick up on it.....
 

Jessie 107

Senior Member
Messages
291
Location
Brighton
There has to be some reason why this happens @Jessie 107 if it's happening to you too. If I had the scientific knowledge, it would be interesting to analyse the whole sleep pattern to see what could be found. I doubt if an average sleep lab would know or pick up on it.....
Yes, it is most strange, I have heard it from others too. If it wasn't so boring to be awake half of the night then I wouldn't mind!! But in my case, it's bad enough being awake during the day 😭😳
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
Yes, staying in bed with insomnia is boring, and we don't know for sure that a few minutes more won't be enough to make us fall asleep again. If I knew for sure that I wasn't going to sleep, I'd get up and do something.

I'd prefer to sleep through my ME too. Wake me up when there's a cure. :thumbsup:
 

JES

Senior Member
Messages
1,320
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...
 

Rufous McKinney

Senior Member
Messages
13,251
'd prefer to sleep through my ME too. Wake me up when there's a cure. :thumbsup:

Feel that way often.

My sleep is tolerable...currently with much lower stress in my life. Its unrefreshing.. I'm deficient of Yin which is not rebuilding sufficiently in the nite.

When I"m entering a PEM cycle- I'll sleep over 10 hours and not want to wake up for another umpteen hours.

If I don't get at least 9 hours I'll crash for sure.

My intestines disrupt sleep. When they do, I always get severe PEM.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
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...
Yes I also find this. If I have 4 or so consecutive nights with 4-5 hours sleep I will NOT feel any better for it that's for certain.
I like sleep too. And obviously my body needs it. So daren't go sleepless for too long or I will certainly crash badly.
It must be that sudden "jolt" as you say @JES which flips something internally and temporarily breaks a pattern.

That must be tough for you -having to go through the whole week like that and work too.
 

Rufous McKinney

Senior Member
Messages
13,251
Do you eat a lot of yin foods ("cooling" foods) @Rufous McKinney ?

I follow (loosely and erratically)...a Tibetan wind diet....reducing wind by eating foods which are energetically grounding. Oily, warm, cooked, no bitter greens (no kale). Almost never eat raw foods.

a mix of Roasted Root Vegetables makes my body incredibly happy. And a pile of protein.

Chinese herbs for IBS-d keep me going...they work excellently with rare exception. Generally not doing probiotics.

I got new chinese herbs for gastroperesis, post flu. I had to reduce the dose. That seems to be working.

I've been off the herb mix (38 of them) I was taking for the last say 10 years.

I shifted to a Lymph formula. It helped within a few days. Lymph nodes dropped way down and stayed down.

Focused on trying to address my perceived lymph stagnation, plus I projected my CSfluid may not be draining properly...I've not resumed the lymph cleanse as Im trying to clear this gastroperesis. (plus I got bursitis...more crap related to stagnation).
 

Rufous McKinney

Senior Member
Messages
13,251
Do you eat a lot of yin foods ("cooling" foods)

I do eat a few cooling foods...I tend to be better at food avoidance...I avoid HEATING foods.

Quest for fermented pickles- and a new batch of saurcrat. This is the best way for me to get probiotics.

These foods are cooling and can be consumed raw...fennel root, snow peas, cucumber..(hence the quest for pickles)...watermelon (the rind part especially).

Wish, at times, I was not so picky of an eater. Nah, won't eat that..it looks suspect.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
Well, it's happened again.
I have felt so unwell in going on a month. I also noticed my sleep was affected during this long crash. I couldn't manage to get more than 7 hours sleep. Usually 6.
That all did me no good. My natural pattern is to sleep at least 8. That level of sleep deprivation was NOT helpful.

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.

I know it won't last. I am craving sleep.

I wish I knew what this was all about. I am in the midst of researching "physiological changes during sleep." Looking for any clues that might be useful.
So far I am hearing something about adenosine receptors being affected by sleep deprivation. I'll post back when I have more info.
 

lenora

Senior Member
Messages
4,913
Yes, Wolfcub, I've also found that I often feel better when I don't sleep. Sometimes the grogginess of a night's sleep (which doesn't often happen, anyway) just doesn't feel worth it for me. I know that at present it's b/c of all the new drugs I'm on. That soon wears off, so then I'm left with little to no sleep and 9 drugs that I have to take. No questions about it, even I have to admit to their necessity. In the meantime I feel as if I can hardly move and actually have to make myself walk around the house. If not, I do feel that my muscles (what's left of them) will deteriorate even more. Perhaps you've reached your peak period for 8 hrs. of sleep, meaning that an hr.'s nap in the afternoon will make up the difference. Or it simply could be a one off, and finding a book to read while you're awake is all that's necessary. I find that soft music also helps. I also find that I sleep better from say 4:00 a.m. to 9-10 p.m. I don't know why that is but I began noticing that many, many years ago. Right now, I'm just plain tired. Good luck...and happy sleeping!