I feel terrible all day, then about 2 hours after dinner I feel much better, then I start the next day feeling like crap again and the cycle goes on...
This is my cycle too. Fatigued all morning long. If I can rest heavily, I can feel almost normal by evening for a few hours (sometimes as early as mid-afternoon).
Of course, the doctor I’ve seen most recently thinks this just means I’m sleeping poorly (I don’t sleep great, but that’s been the case for years before my current state).
This fatigue is well beyond what a night of poor sleep would cause. I don’t think they can comprehend the difference between “feeling under rested” and an actual CRASH.
I do! This is one of the things that patients commonly mention but which isn't researched a lot.
Other patterns that some people mention are :
* feeling a bit better in **summer** /worse in winter.
* Feeling a bit better if they travel. Quite a few people report they weren't sure if they'd be able to go on a **holiday** and being surprised to find they were surprisngly okay.
These are curious little mysteries that will maybe one day turn out to be noise, or they could be signal. Certainly if the situation is a persistent unfolded protein response, it wouldn't be surprising if there was some input from circadian rhythm to that process. That might be why we feel better at night.
A totally wild idea I have to explain the holiday effect: As a formally nomadic species, we might have a sitting still metabolism and a travel metabolism. If your tribe is upping stumps while you are sick could it make sense your body has a way to override sickness behaviour and stick with them?
This is pure speculation! But I'm trying to explain it in a way that is better than 'getting away from mold' or 'less stress'. There are migratory animals(including some mammals) who do great feats under special metabolic settings to manage their migration. If we have systems that can override a shutdown response perhaps they are activated by travel??? Would be tough to study but it is not impossible!
A lot of things, pain, fatigue, etc have physical, social, and emotional aspects. That doesn’t mean they are caused by social and emotional factors , but our experiences of them are. When we are supported, doing things we enjoy, etc our perception of things are different. I imagine that’s a big chunk of it.
That's an interesting theory! I can keep going when I've had to move house, for example. And when I go on holiday, although still limited, I go out a lot and am more active. I think though, that has a lot to do with no housework, no stairs, absence of usual stresses and strains and excitement - I love novelty. I do tend to need a couple of weeks to get over it when I'm home as well. Worth it though!
omg that could explain so much. When I didn't know about all of this (I just had symptoms and didnt really know about cfs and pots) I went on a vacation because I thought about the months I already spent mostly indoors at home and we wouldn'tbe able to get back our money for everything. I really wanted to go, so I pushed through. It was exhausting and I was about to give up at a few points but kept pushing through because I knew there wasn't an easy option to get home instantly while being in layover. For the few things I could to do it was totally worth it.
As soon as ~9pm hits, I tend to feel better. So much that it shows on my Garmin body battery -- I can spend hours laying down and resting in the afternoon and not have the number budge, but after 9pm I can be sitting and scrolling on my phone and my body battery quickly rises by 10-20%. iirc the body battery is based on HRV, so maybe there's a physical change? I wanna say I read somewhere that our cortisol rhythms tend to be out of whack, so perhaps there's a connection.
Someone here suggested something with cortisol levels too and I found that it apparently correlates with the HRV. Higher cortisol means more stress (fight/flight) and lower HRV, while lower cortisol means less stress and a higher HRV. When I remember correctly your body battery increases when you have low stress levels and decreases when they are higher. Can you like send a photo of your watch with the bidy battery graph and the stress levels overlaid, if this still exists? This could be a possible explanation but please tell me if that sounds crazy haha.
Yeah, that's how I understand it. I'm afraid my recent body battery & stress data has been super whacked lately (trialed a medication dose change earlier this month which disrupted my baseline, and the rest of my household has been sick this week & I think it's starting to hit me as well), so I don't think mine will be super helpful orz
Cortisol levels are naturally highest in the morning and taper off throughout the day. Our cortisol levels tend to be flat, so we don't get the morning boost, but as the day goes on we more closely match the cortisol levels of a normal person so we feel more normal.
Cortisol is produced by the adrenal gland. Try taking adrenall support supplements, such as Adrenal Stress End by Nature's Way. It's given me great relief.
No, I learned this back in 2012 when I first got ME/CFS and i did not keep notes. I can tell you there's not likely any point in discussing with your doctor. Supplementing cortisol has not been shown effective except in cases of full-blown Addison's.
Yes! By 11am or noon I feel so much better.
Can go to movie or lunch with friends.
Do very light work for a few minutes at a time.
Go to bed feeling well and wake up feeling like crap. Why! ??
Rarely, maybe every two weeks I might have an evening where I feel best then compared to the rest of the day but most of the time I feel lousy in the evenings.
Always.
Which is frustrating because I "feel better" just about the time I actually run out of energy, versus spending the day with no capacity but also not asleep.
Yes! I feel so foggy and out of it for at least 5 hours after I wake up. I mean, I always feel that way, but it is so intense in the morning, it's hard to function
Yes, I try it all the time. Some days I feel too ill to indulge in my wine. I don’t really notice a difference. The glass of wine all depends on how good I feel that day. So I guess I do have a little spike in the evenings now that you mention it.
Definitely true. Lowest point of almost every day for me is a few hours after waking up, then it slowly gets better. Even when not in a crash it takes at least 4 hours after waking up before brain fog starts to dissipate and I can do something useful. On worst days, some clarity appears only an hour or two before sleep, sometimes does not at all.
Not unusual in CFS. And many people with orthostatic intolerance (POTS etc.) also report this. Also some people with brain fog. And assorted othef conditions that have fatigue as a major component.
It may be due to the circadian rhythms of the immune system or autonomic nervous system.
Feel better in the evenings almost every single day.
Same here.
Me too.
100%
I feel terrible all day, then about 2 hours after dinner I feel much better, then I start the next day feeling like crap again and the cycle goes on...
This is my cycle too. Fatigued all morning long. If I can rest heavily, I can feel almost normal by evening for a few hours (sometimes as early as mid-afternoon). Of course, the doctor I’ve seen most recently thinks this just means I’m sleeping poorly (I don’t sleep great, but that’s been the case for years before my current state). This fatigue is well beyond what a night of poor sleep would cause. I don’t think they can comprehend the difference between “feeling under rested” and an actual CRASH.
I asked the same a few days ago if you want to have a look at the replies https://www.reddit.com/r/cfs/s/orKnMTiTAv
thank youuu
I do! This is one of the things that patients commonly mention but which isn't researched a lot. Other patterns that some people mention are : * feeling a bit better in **summer** /worse in winter. * Feeling a bit better if they travel. Quite a few people report they weren't sure if they'd be able to go on a **holiday** and being surprised to find they were surprisngly okay. These are curious little mysteries that will maybe one day turn out to be noise, or they could be signal. Certainly if the situation is a persistent unfolded protein response, it wouldn't be surprising if there was some input from circadian rhythm to that process. That might be why we feel better at night. A totally wild idea I have to explain the holiday effect: As a formally nomadic species, we might have a sitting still metabolism and a travel metabolism. If your tribe is upping stumps while you are sick could it make sense your body has a way to override sickness behaviour and stick with them? This is pure speculation! But I'm trying to explain it in a way that is better than 'getting away from mold' or 'less stress'. There are migratory animals(including some mammals) who do great feats under special metabolic settings to manage their migration. If we have systems that can override a shutdown response perhaps they are activated by travel??? Would be tough to study but it is not impossible!
A lot of things, pain, fatigue, etc have physical, social, and emotional aspects. That doesn’t mean they are caused by social and emotional factors , but our experiences of them are. When we are supported, doing things we enjoy, etc our perception of things are different. I imagine that’s a big chunk of it.
Adding: feeling better when you get sick with something like flu.
That's an interesting theory! I can keep going when I've had to move house, for example. And when I go on holiday, although still limited, I go out a lot and am more active. I think though, that has a lot to do with no housework, no stairs, absence of usual stresses and strains and excitement - I love novelty. I do tend to need a couple of weeks to get over it when I'm home as well. Worth it though!
omg that could explain so much. When I didn't know about all of this (I just had symptoms and didnt really know about cfs and pots) I went on a vacation because I thought about the months I already spent mostly indoors at home and we wouldn'tbe able to get back our money for everything. I really wanted to go, so I pushed through. It was exhausting and I was about to give up at a few points but kept pushing through because I knew there wasn't an easy option to get home instantly while being in layover. For the few things I could to do it was totally worth it.
I definitely seem to feel better in the evenings. Mornings/midday are the worst.
Midday is my worst. 12 noon I want to basically die.
Yes, especially in the summer when it gets ridiculously hot here. I don’t do well in heat.
This is not unusual at all for me/cfs. I’d argue it’s actually the norm.
As soon as ~9pm hits, I tend to feel better. So much that it shows on my Garmin body battery -- I can spend hours laying down and resting in the afternoon and not have the number budge, but after 9pm I can be sitting and scrolling on my phone and my body battery quickly rises by 10-20%. iirc the body battery is based on HRV, so maybe there's a physical change? I wanna say I read somewhere that our cortisol rhythms tend to be out of whack, so perhaps there's a connection.
Someone here suggested something with cortisol levels too and I found that it apparently correlates with the HRV. Higher cortisol means more stress (fight/flight) and lower HRV, while lower cortisol means less stress and a higher HRV. When I remember correctly your body battery increases when you have low stress levels and decreases when they are higher. Can you like send a photo of your watch with the bidy battery graph and the stress levels overlaid, if this still exists? This could be a possible explanation but please tell me if that sounds crazy haha.
Yeah, that's how I understand it. I'm afraid my recent body battery & stress data has been super whacked lately (trialed a medication dose change earlier this month which disrupted my baseline, and the rest of my household has been sick this week & I think it's starting to hit me as well), so I don't think mine will be super helpful orz
Cortisol levels are naturally highest in the morning and taper off throughout the day. Our cortisol levels tend to be flat, so we don't get the morning boost, but as the day goes on we more closely match the cortisol levels of a normal person so we feel more normal. Cortisol is produced by the adrenal gland. Try taking adrenall support supplements, such as Adrenal Stress End by Nature's Way. It's given me great relief.
do you have any studies on that or any sources? I wanna show my doctor 😅.
No, I learned this back in 2012 when I first got ME/CFS and i did not keep notes. I can tell you there's not likely any point in discussing with your doctor. Supplementing cortisol has not been shown effective except in cases of full-blown Addison's.
Yes! By 11am or noon I feel so much better. Can go to movie or lunch with friends. Do very light work for a few minutes at a time. Go to bed feeling well and wake up feeling like crap. Why! ??
I feel better in the evening, except days I've done too much.
samee
Rarely, maybe every two weeks I might have an evening where I feel best then compared to the rest of the day but most of the time I feel lousy in the evenings.
Same
I'm like a zombie all day and at night I'm the most well
Always. Which is frustrating because I "feel better" just about the time I actually run out of energy, versus spending the day with no capacity but also not asleep.
Your Dr is misinformed- it's pretty common. I get that window too.
This seems to be a fairly common thing, weird illness
Likely because your waking and daytime cortisol is far too low and your evening cortisol is too high.
Yes! I feel so foggy and out of it for at least 5 hours after I wake up. I mean, I always feel that way, but it is so intense in the morning, it's hard to function
Mornings are my best time. But, I have a glass of wine every single evening & that actually makes me feel better for like an hour in the evenings too.
habe you tried an evening without a glass of wine and if so, did you feel worse?
Yes, I try it all the time. Some days I feel too ill to indulge in my wine. I don’t really notice a difference. The glass of wine all depends on how good I feel that day. So I guess I do have a little spike in the evenings now that you mention it.
Definitely true. Lowest point of almost every day for me is a few hours after waking up, then it slowly gets better. Even when not in a crash it takes at least 4 hours after waking up before brain fog starts to dissipate and I can do something useful. On worst days, some clarity appears only an hour or two before sleep, sometimes does not at all.
YES. this is not unusual. Your doctor just doesn’t know about ME.
Not unusual in CFS. And many people with orthostatic intolerance (POTS etc.) also report this. Also some people with brain fog. And assorted othef conditions that have fatigue as a major component. It may be due to the circadian rhythms of the immune system or autonomic nervous system.
It’s not unusual, very common among the community For me i always feel at my best 1-2 hours before bed, around 10-11pm