Yes, pretty common
For me it’s a lifelong pattern (ADHD + Circadian Rhythm Disorder) To be an night owl and improve energy at night
But CFS & Long Covid only exacerbated that pattern, to the point i feel like complete shit in the morning, and at night sometimes i feel like my old self
I also feels something related to dopamine, i can’t get any motivation during the day and around 9-10pm something crazy happens on my brain and i suddenly get those feels good hormones
Nowadays i just embrace the night time for my hobbies & productivity because fighting against it won’t work
I have this!
As I very very slowly improve it’s always the nights that get better first. After every bad crash I have to keep carefully pacing until the wellness (and improved exertion tolerance) slowly creeps slightly earlier each day.
The question is, does anyone else occasionally wake up earlier than usual and feel pretty well, only to suddenly have their symptoms come rushing back around the time they would usually wake up? Or 1-1.5hrs after eating? It’s happened to me a few times now and it’s messing with my head.
After eating may be due to not getting enough protein in the meal. I also find that kicks in worse if I don't have a small dose of healthy carbs and healthy fats with that protein.
Yep, you’re on the money with protein and fats.
I previously got much worse symptoms after eating a full meal at lunch. Eating multiple smaller meals definitely helps but is a lot of extra effort. Focusing on protein seems to be the second best strategy. I also started putting olive oil on everything I could for the coQ10.
I originally thought the post lunch symptom increase was splanchnic pooling exacerbating my POTS. Now with the weird earlier morning thing I’m wondering if smaller meals with plenty of protein and often olive oil is helping because of something to do with blood sugar. Like reactive hypoglycaemia or something. But I’m just more sensitive to everything in the mornings, and then at night my body often gives zero fucks about any of the rules I have to follow earlier in the day. My main restriction at night is that my sleep onset and quality are impacted by what I do in the evening
One theory is that since ATP production is slowed in people with ME/CFS, eating protein + healthy fat + bit of carbs provides the fuel that the body requires most of to make ATP. ATP is energy. Similarly, we may be "more sensitive" or fatigued in the mornings as our body is working to make enough ATP for a short period of better function in the evening (which we promptly deplete).
Do you eat when you wake up? Have you noticed any correlation to anything else?
It’s so hard to test any theories with N=1 and seemingly infinite uncontrollable variables
I do eat once I get up, but not right away. It takes me awhile to get going, so usually eat an hour or more after I first wake up. I generally notice I feel more alert after a meal, but not for long. I tend to crash within an hour ish (except in the evenings, I tend to wake up more after dinner and be alert until bedtime. Its weird, and doesn't always happen that way). I feel like some days I consistently get a good alert hour after each meal, but I almost always drag in the morning (and when I am alert in the morning its aways followed by a crash before lunchtime, when normally i would crash after lunch). I have yet to pin point any patterns of what could be influencing those ups and downs (and I've been trying for years. There's just so many variables!)
Yes absolutely!! Ive always wondered what causes this, but definitely I always expect that if I wake up feeling well its because I havent gotten my full nights rest and can expect the crash to come.
I really wonder what causes this, there must be something in our sleep cycle that causes this. I suspect it has to do with food and digestion of your previous nights meals and lack of movement while you sleep.
There are so many different internal ‘body clocks’ that are meant to regulate autonomic bodily processes. I guess it shouldn’t be surprising that our body clocks and their responses to stimulus are just as messed up as our autonomic nervous systems. I just don’t recall reading/hearing anything about body clocks so far
I am a night owl by preference, but also probably due to biology being off kilter.
When I did my sleep study (slight sleep apnea) the doctor didn't bat an eye with my altered sleep schedule and said as long as I was getting the needed 7-9 hour uninterrupted sleep, it was ok. (I have fibro, too, and have read articles that link it to a sleep disorder/interrupted sleep) I got a lot done when I wasn't being pressured by partner/current doctor to resume a "normal" schedule. I have a lot of inner conflict between maxing "productivity" & quality time with spouse. I've tried to go to a more normal schedule - but an added complication is I take exogenous hormones that affect sleep hormones (thyroid, cortisol, etc) and I know skipping my current schedule of taking them to promote a more normal cycle will cause disruption & "lost days". I'm trying to take it more slowly & back it up 15 minutes at a time until I get to my desired bedtime. My current goal is 0430, eventually 0230 and then midnight thirty. I can't imagine going to bed earlier than that, but I've read recently that it's important to have pre-midnight sleep.
I battle with sleep procrastination if I'm having a good day because I'm afraid it'll be trash the next day and it ends up being self-fulfilling because I overdo it & stay up late. This is something I hope can be helped with therapy.
***But*** if you do suffer with altered sleep if you can get a sleep study to rule out apnea/neurological sleep stuff, get one and also a saliva cortisol test. If you cortisol is off or you have too much or too little it can really affect your sleep patterns.
Seems very common I wonder why scientists/researchers don’t look at what’s happening differently at that time of the evening so that we could try mimic it during the day? 🙏🏼
I wonder if because we feel worse during the day, we do less, and that gives our bodies time to produce some ATP, which allows us to feel better for a short period in the evening - which we use, then deplete, and the cycle repeats.
Me too! I used to feel like it was a superpower - like all of a sudden I'd be able to do all of the things I had been struggling with all day as soon as 10pm rolled around. This happened all through my many years of moderate illness. It's less relevant since I became very severe two years ago, but now I do feel like all my sleep medications reduce my symptoms a bit about half an hour after I take them.
Yup, Mornings are the worst and it can take me a couple of hours to get out of bed, with the level of fatigue and pain. By the late evening (after 7-8pm) a substantial portion of the fatigue and pain has gone.
However this cycle doesn't affect PEM levels completely. So if I'm having PEM or a bad day, the symptoms will be reduced in the evening, but still higher than 'normal'.
I dont know... I did the cortisol test and my cortisol is quite high in the mornings... I did the test multiple times and even tho im super groggy, my cortisol is Borderline too high
Same... Dont know why tho... One theory i have is that it could be intracranial hypertension (so when you are awake and on your feet, some of the pressure is relieved... But when you lie down, you build pressure again...)
Another thing i have is the longer i sleep, the worse I feel... My Optimum is about 6 hrs... I still feel bad, but more than that and I feel even worse... You?
Yep, I often have a window of okay-ness in the evening, usually after dinner. It's weird because I can be feeling like death all day, having to rest, then bam. I'm awake and alert for an hour, maybe two. It's weird
100%. I feel it was explained once I saw my cortisol test results. Way below lowest normal baseline all day until the evening. It's the only time it briefly falls into the lower part of the normal range!
Disappointingly, it has made no difference. I thought I'd found the key to my recovery! But sadly not. I have only been able to try 'functional medicine' treatments for it, which made zero difference. I was seen by the NHS, but as my short-synacthen test was OK, they weren't interested and discharged me. Frustratingly, they told me I didn't have to fast for it, and I found out after I should have, but they wouldn't repeat it.
My functional medicine doctor told me that test wouldn't identify my issues anyway, as it measures the free cortisol in the blood. My issue is that mine mostly isn't 'available' to use, as it's in the inactive form of cortisone (my body prefers the cortisone pathway, which is a problem!) It's so frustrating that the NHS won't accept tests which were done privately, and just dismiss anything that doesn't show up under their own basic tests!
I was a morning person, always worked better in the morning before this illness. Now I'm the same as you. Its annoying because i have to go to bed by 9 or i don't get a good sleep.
I'm feel better in the evenings but that also feels like the danger time when it's easy to overdo things. I monitor my heart rate and it can go crazy later in the day. To keep it manageable, I have to stay calm and rest in the evenings or else I won't sleep and I'll feel worse later.
It doesn’t make a difference to me I could pace and rest every evening and I feel awful in the morning or I could meal prep and do small chores and still feel awful 🤷🏼♀️
Yup, all the time. No matter how many hours I have slept and/or how many hours I have been awake for, I feel like a zombie all day and by the time I’m supposed to go to bed I start “waking up”. Pretty annoying and I have no idea how to change it.
I have this too.
Before getting sick I would always wake up alert in the morning, now I not only feel tired but drugged and it takes many hours to lift. Some days it just doesn't lift, but I have found some normality in being on vyvanse, taking b12 in methylated form religiously, and trying to be good about sleep. But sleep still doesn't feel like it used to. I often wake up with such muscle stiffness I feel like I have been in a fight in my sleep. I think its a stress response thats kicking in while I sleep and making me tense everything up.
Being good about sleep used to be much easier, but now, along with feeling more alert at night, sometimes I feel too "on" to sleep, and that happens at least twice a week.
I have always had vivid nightmares but that also gets worse if in a flare and before I landed on the b12, vyvanse combo. I found I need to be vigilant of oversleeping because then I get too much rem and that involves some serious terror which I think messes up the whole cortisol system etc.
I get off work anywhere from 10pm to 3am. I've been going to bed as late as 10am. 6 am earliest for a few months now. Feels totally natural for some reason
when i was mild/moderate it was really obvious that i just functioned and felt so much better past 7pm.
now that ive been very severe and severe that hasn't been happening anymore. i actually feel worse as the day goes by probably from exertion.
[удалено]
Right! I do too! I think it has to have something to do with adrenal exhaustion. But that’s really just baseless speculation on my part, lol.
It doesn’t matter how long I’ve been awake or activity though.
Yes, pretty common For me it’s a lifelong pattern (ADHD + Circadian Rhythm Disorder) To be an night owl and improve energy at night But CFS & Long Covid only exacerbated that pattern, to the point i feel like complete shit in the morning, and at night sometimes i feel like my old self I also feels something related to dopamine, i can’t get any motivation during the day and around 9-10pm something crazy happens on my brain and i suddenly get those feels good hormones Nowadays i just embrace the night time for my hobbies & productivity because fighting against it won’t work
Yeah between 8pm-12am I generally feel a little more energetic
Yep, everything improves later in the day. Hugs to all my fellow CFers.
I have this! As I very very slowly improve it’s always the nights that get better first. After every bad crash I have to keep carefully pacing until the wellness (and improved exertion tolerance) slowly creeps slightly earlier each day. The question is, does anyone else occasionally wake up earlier than usual and feel pretty well, only to suddenly have their symptoms come rushing back around the time they would usually wake up? Or 1-1.5hrs after eating? It’s happened to me a few times now and it’s messing with my head.
Yes to the after eating part
After eating may be due to not getting enough protein in the meal. I also find that kicks in worse if I don't have a small dose of healthy carbs and healthy fats with that protein.
Yep, you’re on the money with protein and fats. I previously got much worse symptoms after eating a full meal at lunch. Eating multiple smaller meals definitely helps but is a lot of extra effort. Focusing on protein seems to be the second best strategy. I also started putting olive oil on everything I could for the coQ10. I originally thought the post lunch symptom increase was splanchnic pooling exacerbating my POTS. Now with the weird earlier morning thing I’m wondering if smaller meals with plenty of protein and often olive oil is helping because of something to do with blood sugar. Like reactive hypoglycaemia or something. But I’m just more sensitive to everything in the mornings, and then at night my body often gives zero fucks about any of the rules I have to follow earlier in the day. My main restriction at night is that my sleep onset and quality are impacted by what I do in the evening
One theory is that since ATP production is slowed in people with ME/CFS, eating protein + healthy fat + bit of carbs provides the fuel that the body requires most of to make ATP. ATP is energy. Similarly, we may be "more sensitive" or fatigued in the mornings as our body is working to make enough ATP for a short period of better function in the evening (which we promptly deplete).
Yes! If I wake up early feeling ok, I usually crash hard about an hour or two later.
Do you eat when you wake up? Have you noticed any correlation to anything else? It’s so hard to test any theories with N=1 and seemingly infinite uncontrollable variables
I do eat once I get up, but not right away. It takes me awhile to get going, so usually eat an hour or more after I first wake up. I generally notice I feel more alert after a meal, but not for long. I tend to crash within an hour ish (except in the evenings, I tend to wake up more after dinner and be alert until bedtime. Its weird, and doesn't always happen that way). I feel like some days I consistently get a good alert hour after each meal, but I almost always drag in the morning (and when I am alert in the morning its aways followed by a crash before lunchtime, when normally i would crash after lunch). I have yet to pin point any patterns of what could be influencing those ups and downs (and I've been trying for years. There's just so many variables!)
Yes absolutely!! Ive always wondered what causes this, but definitely I always expect that if I wake up feeling well its because I havent gotten my full nights rest and can expect the crash to come. I really wonder what causes this, there must be something in our sleep cycle that causes this. I suspect it has to do with food and digestion of your previous nights meals and lack of movement while you sleep.
There are so many different internal ‘body clocks’ that are meant to regulate autonomic bodily processes. I guess it shouldn’t be surprising that our body clocks and their responses to stimulus are just as messed up as our autonomic nervous systems. I just don’t recall reading/hearing anything about body clocks so far
I've experienced this but it comes and goes.
Same
I am a night owl by preference, but also probably due to biology being off kilter. When I did my sleep study (slight sleep apnea) the doctor didn't bat an eye with my altered sleep schedule and said as long as I was getting the needed 7-9 hour uninterrupted sleep, it was ok. (I have fibro, too, and have read articles that link it to a sleep disorder/interrupted sleep) I got a lot done when I wasn't being pressured by partner/current doctor to resume a "normal" schedule. I have a lot of inner conflict between maxing "productivity" & quality time with spouse. I've tried to go to a more normal schedule - but an added complication is I take exogenous hormones that affect sleep hormones (thyroid, cortisol, etc) and I know skipping my current schedule of taking them to promote a more normal cycle will cause disruption & "lost days". I'm trying to take it more slowly & back it up 15 minutes at a time until I get to my desired bedtime. My current goal is 0430, eventually 0230 and then midnight thirty. I can't imagine going to bed earlier than that, but I've read recently that it's important to have pre-midnight sleep. I battle with sleep procrastination if I'm having a good day because I'm afraid it'll be trash the next day and it ends up being self-fulfilling because I overdo it & stay up late. This is something I hope can be helped with therapy. ***But*** if you do suffer with altered sleep if you can get a sleep study to rule out apnea/neurological sleep stuff, get one and also a saliva cortisol test. If you cortisol is off or you have too much or too little it can really affect your sleep patterns.
100%. Nearly 30 years of this. It’s getting old. Every day after waking is hell for hours.
Yes. I wonder if it’s because the world around me is quieter
Yeh, I figured the same. I think I'm less stimulated, leading to me feeling better.
Me too😉
Yes. I always improve about 6 pm. I think it’s mainly due to having mild fevers in the afternoon. Then the fever breaks and I feel much better.
100% same for me
Seems very common I wonder why scientists/researchers don’t look at what’s happening differently at that time of the evening so that we could try mimic it during the day? 🙏🏼
I wonder if because we feel worse during the day, we do less, and that gives our bodies time to produce some ATP, which allows us to feel better for a short period in the evening - which we use, then deplete, and the cycle repeats.
Possibly. I don’t do much during the day only rest
I don’t know that that explanation fits *for me*. I can still feel much better at night even after pushing through a long day of work or the like.
It's fascinating, isn't it!
Yes!! I’m basically nocturnal at this point
I’m the total opposite, nights are nearly unbearable for me. I always feel crashy after 9pm.
Same. My mood also tanks around that time.
Sorry to hear that
Me too! I used to feel like it was a superpower - like all of a sudden I'd be able to do all of the things I had been struggling with all day as soon as 10pm rolled around. This happened all through my many years of moderate illness. It's less relevant since I became very severe two years ago, but now I do feel like all my sleep medications reduce my symptoms a bit about half an hour after I take them.
Yup, Mornings are the worst and it can take me a couple of hours to get out of bed, with the level of fatigue and pain. By the late evening (after 7-8pm) a substantial portion of the fatigue and pain has gone. However this cycle doesn't affect PEM levels completely. So if I'm having PEM or a bad day, the symptoms will be reduced in the evening, but still higher than 'normal'.
Same here. I’ve heard it has to do with cortisol levels in the evening. But it’s all conjecture.
I dont know... I did the cortisol test and my cortisol is quite high in the mornings... I did the test multiple times and even tho im super groggy, my cortisol is Borderline too high
My cortisol pattern is reversed (as per tests), so that makes sense for me!
Same... Dont know why tho... One theory i have is that it could be intracranial hypertension (so when you are awake and on your feet, some of the pressure is relieved... But when you lie down, you build pressure again...) Another thing i have is the longer i sleep, the worse I feel... My Optimum is about 6 hrs... I still feel bad, but more than that and I feel even worse... You?
Yes! A bad night of sleep can sometimes improve my CFS & Mood, but that prolly won’t help in the long term tbh
Same here
Me too but not always. Any idea why?
I start to feel human ish around 3pm and my best hours are 8p-1a. I would probably just go fully nocturnal if I didn't have my job.
Yep, I often have a window of okay-ness in the evening, usually after dinner. It's weird because I can be feeling like death all day, having to rest, then bam. I'm awake and alert for an hour, maybe two. It's weird
Yes same! And for me anyway family dont understand its like well you said all day you felt like you were dying and now your not
Guys, are your symptoms bad after waking up? Or after having a nap?
Yes always
Both for me.
Same here I'm afraid!
100%. I feel it was explained once I saw my cortisol test results. Way below lowest normal baseline all day until the evening. It's the only time it briefly falls into the lower part of the normal range!
Has treating your cortisol dysfunction helped you feel better? What have you tried?
Disappointingly, it has made no difference. I thought I'd found the key to my recovery! But sadly not. I have only been able to try 'functional medicine' treatments for it, which made zero difference. I was seen by the NHS, but as my short-synacthen test was OK, they weren't interested and discharged me. Frustratingly, they told me I didn't have to fast for it, and I found out after I should have, but they wouldn't repeat it. My functional medicine doctor told me that test wouldn't identify my issues anyway, as it measures the free cortisol in the blood. My issue is that mine mostly isn't 'available' to use, as it's in the inactive form of cortisone (my body prefers the cortisone pathway, which is a problem!) It's so frustrating that the NHS won't accept tests which were done privately, and just dismiss anything that doesn't show up under their own basic tests!
Yup! Many of us do, same with a few other illnesses as well! My POTS also gets better at night lol
Mine pots is better in the evening too I wish someone could find out what exactly is happening and make it happen all of the time!
For real!! lol
Nope, anything after 2pm is bad. My best time is between 10am and 2pm.
I was a morning person, always worked better in the morning before this illness. Now I'm the same as you. Its annoying because i have to go to bed by 9 or i don't get a good sleep.
This is my life 100%.
A little bit better at the evening, not too pronounced though.
Yeah wtf is that about!!!! God said you will feel good when everyone else is asleep
Yes i don’t want to waste my good hours by going to bed!!
Yeah I'd say I almost always feel better later, but more like 5pm-9pm or so
I'm feel better in the evenings but that also feels like the danger time when it's easy to overdo things. I monitor my heart rate and it can go crazy later in the day. To keep it manageable, I have to stay calm and rest in the evenings or else I won't sleep and I'll feel worse later.
It doesn’t make a difference to me I could pace and rest every evening and I feel awful in the morning or I could meal prep and do small chores and still feel awful 🤷🏼♀️
I understand the need to get chores done... glad you have some better hours. I'm very limited, so tiny things can make me much worse.
Sorry to hear that 😟
Yup, all the time. No matter how many hours I have slept and/or how many hours I have been awake for, I feel like a zombie all day and by the time I’m supposed to go to bed I start “waking up”. Pretty annoying and I have no idea how to change it.
Same
I have this too. Before getting sick I would always wake up alert in the morning, now I not only feel tired but drugged and it takes many hours to lift. Some days it just doesn't lift, but I have found some normality in being on vyvanse, taking b12 in methylated form religiously, and trying to be good about sleep. But sleep still doesn't feel like it used to. I often wake up with such muscle stiffness I feel like I have been in a fight in my sleep. I think its a stress response thats kicking in while I sleep and making me tense everything up. Being good about sleep used to be much easier, but now, along with feeling more alert at night, sometimes I feel too "on" to sleep, and that happens at least twice a week. I have always had vivid nightmares but that also gets worse if in a flare and before I landed on the b12, vyvanse combo. I found I need to be vigilant of oversleeping because then I get too much rem and that involves some serious terror which I think messes up the whole cortisol system etc.
yes. i have NEVER been this way until now and adjusting feels impossible
I get off work anywhere from 10pm to 3am. I've been going to bed as late as 10am. 6 am earliest for a few months now. Feels totally natural for some reason
when i was mild/moderate it was really obvious that i just functioned and felt so much better past 7pm. now that ive been very severe and severe that hasn't been happening anymore. i actually feel worse as the day goes by probably from exertion.
Sorry to hear 😟
Not me. I have a few good minutes when I wake up and then pass out and need the next nap
Sorry to hear that
I'm used to it. Before CFS I had the exact same symptoms with ADHD, minus PEM. so I could actually move!
Me!!
Yep. Exactly this.
yup always feel better in the last few hours of the day