• 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, 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.

Level of Activity and Sleep

lenora

Senior Member
Messages
4,926
Ahh....the elusive world of sleep! I can be a very tired old dear, but when I try to sleep I once again come to life. Meanwhile my husband whose head has just hit the pillow is gently snoring away.

I have found in all these years that nothing works for me as far as herbs, vitamins, sleeping meds.....melatonin, you name it, I've tried it.

So now I accept it and find that life is much easier that way. I don't like it, I don't mean that.....but it is what it is. Actually if I sleep a full night, I wake up and feel grumpy the entire next day. Is this learned behavior this lack of sleep? No, I think it's some malfunction of the brain. I have a few neurological conditions and it's highly possible that the needed chemicals do not reach my brainstem. So I live in a rather blurry world....right now my eyes are burning and I feel that I could sleep....but experience has taught me otherwise.

I have noticed that if I watch something funny before bedtime, I definitely won't sleep that night....and I love to laugh. That combo can be a problem. Insomnia, the experts tell us, becomes more common with age. That's true, so perhaps I should just invest in a good lounge chair and have a nap. Except that I can't nap, either.

Let's just say that I never miss anything.....I just wish I had the energy to go along with my wakefulness. Sweet dreams for those of you who have them. Yours, Lenora
 

Wishful

Senior Member
Messages
5,751
Location
Alberta
the more severe end of the scale seems like an entirely different illness to me.
I think it's more likely that the severe case involves more systems operating abnormally, with the core dysfunction remaining the same (but possibly increased in magnitude). Our interlinked systems have certain ranges over which they can compensate for abnormalities elsewhere, but if you exceed those ranges, those systems will start producing abnormal results, which can cascade onto other systems.

Our planet can absorb a certain amount of CO2 without major effects, but if we pass some level, we start increasing heat absorption as the snowcover melts, and outgassing more CO2 and methane as permafrost melts and ocean clathrates warm up, and major ocean currents might fail, and various other feedback mechanisms kick in, so instead of gradually getting warmer, there might be major catastrophes. I think ME might work in a similar way.
 

Wishful

Senior Member
Messages
5,751
Location
Alberta
nutrients accurately proportioned & optimized by evolution
No, I think that's wrong. Evolution doesn't work to make foods (plants, animals, etc) more perfectly nutritious for humans. Humans and other organisms adapt to what resources are available. When our ancestors became proficient at adding foods rich in VitC to their diets, they evolved (lost the resource-costly VitC production ability) to benefit from that. Ocean microbes evolved to produce omega-3 oils for their benefits, not ours.

I don't think humans changed their diets to seek nutritional perfection. They ate whatever was most satisfying with the least amount of effort. Chicken McNuggets or Kraft Dinner are hardly pinnacles of nutritional perfection, but they are popular.

I'm also not a fan of the concept of perfect ratios of nutrients in meals. Our bodies have fairly large reserve capacities for nutrients. I spent a year or so with minimal vitamin and mineral intake, and didn't notice any deficiency symptoms, so I'm really not convinced that having the "perfect ratio" in each meal is important. I've encountered lots of claims for diets based on specific ratios per meal, but not any reliable studies backing up those claims. I'm still amused by a protocol of x glasses of water per day, and coffee or tea for some reason didn't count ... but drinking a cup of pure water and eating a tsp of coffee grounds or tea leaves would.
 

Wishful

Senior Member
Messages
5,751
Location
Alberta
https://newatlas.com/medical/stress-neurons-sleep/

Some new research on why stress--and maybe activity--interfere with restful sleep. Since it involves the hypothalamus, something possibly involved in ME, that might explain why PWME have sleep problems.

“The glutamatergic neurons in the hypothalamus give us a promising target for developing treatments for stress-related sleep disorders,” So, someday...

I'm still quite sensitive to cognitive effort past 1:30 (used to be 2:30), resulting in insomnia. Physical exertion no longer triggers insomnia (haven't tested that recently without eating an egg a day). Interacting with people leaves my brain in a "high revving" state, making it really hard to fall asleep (can take hours).
 

lenora

Senior Member
Messages
4,926
Yes, I find the same problem with comedies late at night. My brain is just too revved up, even a certain song plays over and over again in my mind. Visting in the afternoon leaves me totally drained, even telephone calls after 4;00 p.m. do.

Reading can calm my mind and I'm finally able to return to it. I'm older now, so have the sense to realize there are certain things I can't control. Perhaps I was a controlling person, but I'm now free of that. We often have to look inwards and I find psychotherapist to be a great help at times. It helps us clarify matters and make changes, if necessary. Maybe I've just been fortunate, I can't speak for everyone. Yours, Lenora
 

lenora

Senior Member
Messages
4,926
Hi Wishful......Do you suffer from all night insomnia from these occurrences? Mine can go on for days at a time....I'm in one such period at the moment. I can see where something like walking later in the evening could really rev someone up. Suggestions are always welcome from anyone.

Oh, I can't have a bath b/c of bad knee problems. Now that would really keep me awake! Yours, Lenora
 

Wishful

Senior Member
Messages
5,751
Location
Alberta
Do you suffer from all night insomnia from these occurrences?

No, rarely all-night insomnia. Usually I fall asleep, wake up every 90 minutes, and at one of those cycle ends, I simply stay awake. If it happens early enough (<2?) I can get up, read for a while, then go back to bed and possibly fall asleep again. Last night I woke at 12:00, got up and read for a while, then back to bed at 1:30 and slept till 5:40. More commonly the insomnia strikes >2, and either I can't fall asleep after that or if I do, I wake up extra-groggy, so I try to avoid that.

It is possible to treat this sort of insomnia. Physical activity past 2 PM did trigger my insomnia, but adding eggs to my diet treated that. Maybe my cognitive activity insomnia has a simple treatment too, but what food found where in the world? I consider myself extremely lucky that my treatment for the physical trigger was readily available here and was something I was willing to put in my mouth ... and it coincided with an expected insomnia event that didn't occur.
 

xploit316

Senior Member
Messages
147
I have noticed the following patterns with my sleep.
1. Afternoon shut eye (1-1.5 hours): Irrespective of activity level or food eaten, no issue falling asleep quickly and staying asleep, and quality of sleep is very refreshing.
2. Nightime: No matter level of physical or mental activity (though a late night chess game or a few maths calculations are sure shot way to insomnia), I just can't fall asleep before 2am. Have tried not exercising/No TV/Mobiles in evening, dim lights, light meals/heavy meal, no afternoon nap, eating whole egg at dinner which helped for a short time and than stopped working, its been a struggle lately.

1 thing I have noticed though is that once a month work requires me to travel 200kms to a town for survey. This activity involves me just sitting in a car or train being driven(and not driving the car myself this is important or else hello 2am sleep) long distance at high speed, seems to tire me both physically and mentally. Those nights(other variables being constant) I tend to fall asleep sooner around 11:30pm without issue. Not even sure if what I noticed actually makes sense but just putting it out there if someone else noticed it too.
 

lenora

Senior Member
Messages
4,926
Hi xploit316.....I have an answer for part of your problem. But it may cost you: Hire a car and driver for long distance and speed. Perhaps you were a baby whose parents stopped you from crying by placing you in the car in the evening and doing what seemed to work for you. Their bad habit, not yours!

If I fall asleep for even 15 min. in the daytime or evening, then it's a total guarantee that I won't sleep that night. Really, even the sleep clinics (twice) are puzzled and no one has an answer. So at this age, I don't take a thing for it as I know one night max and then I'm messed up even more for the forthcoming two weeks or so. Each time it's even worse....so I've surrendered to the Gods of Sleep....whatever they deem is what I'll get.

I slept as a child and teen, lights on full stop, music blaring, people talking (I'm the oldest of 9 children), yet haven't managed to calm myself down in all these years. I even tried an instant replay of the same conditions and no, sad to say, they just didn't work. No sleep at all, just a lot of noise.

At least my hubby sleeps and sleeps like a baby. I'm grateful for that as living in the same place as two people who can't would be a most unpleasant place to be. Funny, if I do manage sleep I've noticed that my mood is worse than when I don't. I've given up....as I often say, 'The Answer is......there is no Answer.' Anyway, I can't sleep at the moment, so I thought I'd let Rod have some peace.

@Wishful.....I must have had you in mind when I asked if we had any hard boiled eggs for my last meal of each day around 5:00 p.m. Short answer....."No." Tomorrow & I'll let you know if it works.

Sleep well, every one, no pain, sweet dreams and don't worry about the world, I'll be tonight's watchman. Yours, Lenora
 

xploit316

Senior Member
Messages
147
@xploit316 If I sleep in the afternoon after 3 then it effects what time I can sleep at night. Is this the same with your afternoon sleep?
I typically fall asleep around 4pm and wake up at 5-5:30pm. I have tried on many occasions to not sleep in the afternoon but this had no effect on me falling asleep earlier at night. On the monthly trip I mentioned earlier, I do take short 15-20min naps on my return journey via car/train and I still am able to sleep by 11:30-12am without issue. I notice on returning back home that my mental/body fatigue is high after these trips, which may be helping me fall asleep earlier than usual. BTW, the survey work i do on these monthly trips is financial surveys sitting in an office.
 

Wishful

Senior Member
Messages
5,751
Location
Alberta
Yesterday I had to do some online stuff (ordering vehicle parts) past my usual cutoff time, expecting another night of insomnia. Instead I avoided insomnia, but my brain had that "racing" feeling when I went to bed, delaying my ability to fall asleep. Such a complex disease/disorder.
 

Dysfunkion

Senior Member
Messages
139
I get this too.

Same here. It's different than actual insomnia, when I'm online late at night and need to do something that requires a lot of brain power my mind starts racing and can't slow down. My mood doesn't seem to matter, it's just the activity itself but my emotions will also blend together from different situations that happened immediately close to each other.

In fact I was gonna comment on this in general. It feels like my fatigue is largely connected to an ability of something in my system to accelerate or slow down properly. Thoughts, feelings, and actions will mentally blend together causing chaos up there at the wrong times. Like for example at work this is something that happens a lot to me. I'm doing something on the counter while waiting for someone to ring out, person approaches, my brain can't immediately stop the current activity and my motor movements and thoughts from it will mix with the sudden person I need to deal with, I'll probably fumble around with my words/forget something in short term memory, or feel an emotion I was feeling thinking about something else while doing the other activity that won't match the current situation at hand that will be too dominant over the current interaction.