• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Sleep Deprivation and CFS

Messages
30
I discovered a long time ago that sleep deprivation helped my CFS. I used to have a job where I worked all day and then once in awhile would have to work all night. If I was having a bad day with my CFS, I found that around 2 AM the symptoms starting subsiding and by an hour later they were completely gone. It was predictable and a great relief to me but unfortunately after sleeping the next day they all returned.

Has sleep deprivation ever helped your symptoms?
 

Mary

Moderator Resource
Messages
17,334
Location
Southern California
@RuralRick - I'm afraid it's the opposite for me, and I suspect most others here. Most of us seem have often severe trouble with insomnia. It would be wonderful if this insomnia actually was helpful, but unfortunately it just makes everything worse for me! :mad: I take a cocktail of supplements for sleep every night as well as the middle of the night. It's work, but I get by. I can't tolerate meds for sleep. Actually I did tolerate lorazepam for 11 years, I liked it the best but got off it when I read about the Alzheimer's connection with benzos.
 
Messages
30
I understand, Mary. I'm not surprised that many people have insomnia here. What I'm talking about, however, is staying up on purpose. Not lying down and trying to sleep. I know it sounds the same but I think its different. Where you push yourself to the point that your eyes want to bug out of your head because you're so tired but still you don't lie down and try to sleep.

Sleepiness is just a bunch of neurotransmiitters firing off and neurons being stimulated ,right? And if I'm really tired, then there are some really unusual signals that my body does not normally experience. And somewhere in that cocktail is a therapeutic mixture that works for me. If we can figure out what helps us to feel better, then maybe we can reverse engineer the cause and understand it.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
I discovered a long time ago that sleep deprivation helped my CFS. I used to have a job where I worked all day and then once in awhile would have to work all night. If I was having a bad day with my CFS, I found that around 2 AM the symptoms starting subsiding and by an hour later they were completely gone. It was predictable and a great relief to me but unfortunately after sleeping the next day they all returned.

Has sleep deprivation ever helped your symptoms?

I get a similar thing @RuralRick
I've always been a little bit of a "night owl" inasmuch as I have always been comfortable going to sleep about 1-2am and waking up about 9 ish. Even when perfectly well and fit.
But since being unwell I have found the same thing as you. If I am sleep deprived I will feel tired, yes...but I won't feel unwell.
I cannot understand that.
I can feel I desperately need a really good sleep, so I get one and wake up feeling not too bad....take a shower, start to get ready, and eat breakfast.....and within an hour or two feel weaker, exhausted (that feeling I used to get when I had really pushed it for days on end and then got 10 hours sleep.) Like I've slept well but have not recovered quite yet.
Only in the past a couple more nights of 8 hours sleep would put my energy to rights, now it doesn't.

It's got so bad sometimes I have wondered (seriously) if I'm in my last days. I have wondered seriously if I will see out the winter.

And then a weird thing happens. The sun goes down and I literally feel better.
I am getting that right this minute. It's WAY past bedtime and I am hedging about going to sleep though it used to be such a nice thing to do when tired at the end of the day. I just know I will wake up feeling okay, then within two hours I will be a wet rag for the rest of the day until sundown. Too weird. Never look forward to tomorrow any more, if you know what I mean.

I have thought it might be because I have eaten dinner and am reaping the benefits of that....I honestly don't know.
 

S-VV

Senior Member
Messages
310
It happens to me. It's more regulated by sun than by time. As soon as there is less light, I start feeling better. It's especially noticeable in summer.
 

S-VV

Senior Member
Messages
310
Any theories on this?

Yes. One is an abnormal thyroid functioning which influences cortisol. Most adrenal fatigue is subclinical hypothyroidism (according to Ray Peat, whom I respect a lot). This means that cortisol is low in the morning and high at evening.

The other is unhealthy metabolites produced by the microbiome and SIBO. For example, high levels of Ammonia invert the circadian Rythm. And having a genetic mutation that impairs ammonia detox has just been linked with higher risk of CFS.

Do you have bloating and/or digestive upset?
 
Messages
30
Yes, I have both. In fact, this is usually the first sign that I'm going into an exacerbation. Its also the last thing to leave when I feel better.

Thanks for the responses. Its interesting that some are affected just by night arriving while others need to stay up later. Its exciting for me to hear other people have experienced what I've experienced. I've been alone with this for so long.
 

S-VV

Senior Member
Messages
310

S-VV

Senior Member
Messages
310
Yes, I have both. In fact, this is usually the first sign that I'm going into an exacerbation. Its also the last thing to leave when I feel better.

Thanks for the responses. Its interesting that some are affected just by night arriving while others need to stay up later. Its exciting for me to hear other people have experienced what I've experienced. I've been alone with this for so long.

Yeah, for me the first sign my symptoms are going to abate is a flushing kind of diharrea. On the other vand, constipation means a worsening of symptoms.

How many years have you been with CFS? It can feel very lonely sometimes
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
Whether symptoms are caused by cortisol levels, or thyroid imbalance or other things....what always baffles me is why just sleep deprivation should help symptoms?
I have a lot to learn which I don't know. Would sleep deprivation keep cortisol levels more stable? Is that why?

I'm truly interested. I usually sleep well indeed and feel I need it, but last night couldn't sleep until 6am, then got a few hours but not anything like as much as I need. So today I felt tired -sure. But symptoms were much less. I did not feel that bizarre, unnatural exhaustion -just tired.

Sad because when you are tired how nice it is to look forward to a good sleep and to wake up refreshed in the morning....(that must have been in a past life.)
I know. I understand this.
 

knackers323

Senior Member
Messages
1,625
@S-VV i get a marked improvement within 12-24 hours of not eating but no noticeable stomach symptoms

I have gut dysbiosis that is apparently mild (depending on what dr I talk to) but I would guess pretty much everyone in the modern world would have some level of dysbiosis.
It's not even fully understood what "normal" gut flora should be
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
@knackers323 I think gut flora is unique to the individual. That's why I am not just throwing pro-biotics down my throat and am a bit wary of them, though the idea interests me. I see "lactobacillus"....then see "acidophilus" and don't know if one or the other is going to upset my gut. I really really don't need that.
Does anyone know how you discover your own unique gut flora balance?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
For me I see no reason to think that sleep deprivation helps. With me, over time, it results in steadily worsening orthostatic intolerance and I start passing out and collapse on every single stair. I did this kind of thing for years.

I do however know that if I do not try to sleep at sleep time, and wait till my body is ready, even if that is days, I sleep better. Insomnia does not exist at that point. This does not however require staying awake forcibly, its about paying attention to when my body needs sleep, and not doing it by a clock.
 
Messages
30
Yeah, for me the first sign my symptoms are going to abate is a flushing kind of diharrea. On the other vand, constipation means a worsening of symptoms.

How many years have you been with CFS? It can feel very lonely sometimes

This Fall it will be 40 years. I have never met anyone else who has what I have (whatever that is). It has also apparently not shortened my lifespan so far. So whatever it is, it isn't toxic to my body, just my brain. I do take something that is very helpful, a tricyclic antidepressant. So most of my 40 years have not been terrible. But when it flares up I am reminded of how devastating this is to the psyche and I do feel very alone with it.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
Well I felt pretty rough generally yesterday. Then (unusually because I usually sleep well) I couldn't sleep last night. Something bothering me, unconnected to symptoms. Got to sleep at 5am-ish. Woke at 10. Felt fine!
Got a slump about 1pm, but that felt like "just tiredness from not enough sleep" and nothing worse, then came back up again and felt completely symptom-free for the rest of the day including evening!
What the heck is this?
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
This Fall it will be 40 years. I have never met anyone else who has what I have (whatever that is). It has also apparently not shortened my lifespan so far. So whatever it is, it isn't toxic to my body, just my brain. I do take something that is very helpful, a tricyclic antidepressant. So most of my 40 years have not been terrible. But when it flares up I am reminded of how devastating this is to the psyche and I do feel very alone with it.
I am sorry @RuralRick :hug: Indeed I am.
It is easy to feel very alone and isolated in many ways when something is happening internally which doesn't seem to be happening to others.
But I think we all here know what it's like in one degree or another.
Kind wishes to you for some better days.
 
Messages
22
@RuralRick - I'm afraid it's the opposite for me, and I suspect most others here. Most of us seem have often severe trouble with insomnia. It would be wonderful if this insomnia actually was helpful, but unfortunately it just makes everything worse for me! :mad: I take a cocktail of supplements for sleep every night as well as the middle of the night. It's work, but I get by. I can't tolerate meds for sleep. Actually I did tolerate lorazepam for 11 years, I liked it the best but got off it when I read about the Alzheimer's connection with benzos.

i am with u. the less sleep i have, the more severe are my symptoms
 
Messages
30
Denmarker, I wonder, have you tried staying up all night, on purpose? No laying down allowed.

It may not help, but I am curious how you would feel by morning.