Is your worst fatigue in the morning too?

[Inca]

On a good day I chuck some clothes on (don't bother with shower just put jogpants/fleeceover PJ's to preserve energy) and get my dog out first thing sometimes just been out in the fresh air helps and I feel better by the time I get home. I use a mobility scooter too so reduces amount of energy needed to fit his walks in.. sometimes I manage something else then like breakfast before needing to rest again..then getup again later..try and do a bit more ..then rest for longer time..3-6pm ...then try and get up to see to doggy for a couple of hours before retiring to bed at 8pm (to watch some TV).

Other days it takes me until lunctime to get going..doggy always get priority..so whatever energy I have is used on his walk and play etc then its whatever I have left ..usually isn't much so housework etc rarely gets done!..and rarely ever have any spare to go out to get dressed up, go out socialise as getting in and out of car with crutches and speaking and understanding people seems to take a huge amount of energy and zap any energy I did feel I had..really fast! ...requiring days for recovery.

I often do better in summer when days are longer and warmer but not if it too hot...heatwave weather wipes me out as much as really cold weather

 

[HRManager]

Mine are worse in the afternoon/evening. I start dying off at work about 1 or 2 PM

 

[Arius]

I believe my pattern is similar to yours, at least these days. I find it easier to get up early, like 5am. But if I do that too many days in a row, it starts to bring me down.

I normally get up around 7:30-8:00am. I wake up feeling like absolute garbage. It takes everything I have to get out of bed. I go to the bathroom and then kill some time checking my messages or watching TV until I feel well enough to make breakfast. Usually takes at least an hour. Some mornings are better than others; I have no idea why. Some days I can get up and go for a little walk right away or even do a bit of Qigong, but that's pretty rare. Sleep feels like poison to me. I actually function better without it, temporarily, but that's only because I'm running on adrenaline; I eventually crash.

My high energy point is mid-afternoon, between my 2 hour morning and afternoon naps. Then my energy dips pretty hard in the evening. I would say evenings are worse than mornings for me.

 

[Jo86]

Does anyone here suspect there's a link with hypoxia (lack of oxygen), either cellular lack of oxygen or lack of oxygen traveling to the brain... just, something with a lack of oxygen ?
Some sleeping pills are known to limit oxygen feeding in the organism.
Brain fog, especially upon waking, can feel like we've been cut off from fuel or, something like that.

I'd bet in many of us here, part of the issue with waking up smashed is we're coming off hours of partial oxygen deprivation, or at least sub-optimal oxygen circulation.

 

[Wishful]

Does anyone here suspect there's a link with hypoxia

No, I never considered that. If that was true, then I would have expected reports from people who wear oxygen masks or use other O2-boosting techniques. That hypothesis would be fairly easy to test, by supplying extra O2.

Even simpler: if the morning brainfog was due to lack of oxygen, just breath deeply and see whether it clears up.

 

[Jo86]

No, I never considered that. If that was true, then I would have expected reports from people who wear oxygen masks or use other O2-boosting techniques. That hypothesis would be fairly easy to test, by supplying extra O2.

Even simpler: if the morning brainfog was due to lack of oxygen, just breath deeply and see whether it clears up.

I mean, not entirely due to lack of oxygen. Brain fog has many possible causes.

But I know for eg. ambien will have an anti-oxygen effect, which I take daily (because it's just easy to do) but I'm going to try to quit for a while. I usually do feel a bit better when I stop it for a while, and I reckon part of that might have sth to do with better oxygen during sleep.

 

[Osaca]

Does anyone here suspect there's a link with hypoxia (lack of oxygen), either cellular lack of oxygen or lack of oxygen traveling to the brain... just, something with a lack of oxygen ?
Some sleeping pills are known to limit oxygen feeding in the organism.
Brain fog, especially upon waking, can feel like we've been cut off from fuel or, something like that.

I'd bet in many of us here, part of the issue with waking up smashed is we're coming off hours of partial oxygen deprivation, or at least sub-optimal oxygen circulation.

I certainly feel that way, but feelings are often a horrible measurement and those treatments that adress lack of oxygen directly or indirectly like EPO, HBOT, and the many others that have been tried never seemed to have a positive outcome.

Many are also not taking any sleep medication and are still waking up smashed from the limited sleep they get.

Possibly things are happening at some cellular level, but that's always just a random guess in any scenario.

Rob Wust's group in Amsterdam has found some evidence (soon to be published) of microclots in the tissue of LC patients, causing clogging and ischemia problems. As always we'll have to see if this is also applicable to ME/CFS, for which he has received funding, and how robust it is vs HC and whether it's reproducible.

 

[Likaloha]

Does anyone here suspect there's a link with hypoxia (lack of oxygen), either cellular lack of oxygen or lack of oxygen traveling to the brain... just, something with a lack of oxygen ?
Some sleeping pills are known to limit oxygen feeding in the organism.
Brain fog, especially upon waking, can feel like we've been cut off from fuel or, something like that.

I'd bet in many of us here, part of the issue with waking up smashed is we're coming off hours of partial oxygen deprivation, or at least sub-optimal oxygen circulation.

I think this lack of oxygen can occur due to sleep apnea. I have been diagnosed several times and have tried C-pap and Bi- pap machines but they don't really help me.

 

[Jo86]

I think this lack of oxygen can occur due to sleep apnea. I have been diagnosed several times and have tried C-pap and Bi- pap machines but they don't really help me.

mmm, same, sort of. I was "diagnosed" with sleep apnea, apparently I had these tiny sleep apnea moments during sleep, but then I had something made to put in my teeth to keep my throat open during my sleep and apparently that took care of it, so, if anything's happening during sleep, it may not be sleep apnea at all.

 

[gm286]

Also diagnosed with (severe obstructive) sleep apnea. Among my diagnoses that is the one I take the least seriously.

I remember that short phase when the Abilify worked for the first time. I now no longer take it. But, the very first time, it literally pulled all my muscles and energy and mood and digestive system into homeostasis. I never felt better. I slept extremely well, and woke up fresh as I’ve ever been. Without muscle pain, or whatever other process caused the muscles to sag inside the mouth and provoke apnea.

It’s not just a hypoxia thing to me. Hypoxia feels like it is a repercussion. It absolutely feels like a neurotransmitter problem and upstream of that, like some kind of energy / cellular problem.

 

[Wishful]

I never felt better.

I'd call that temporary remission. I've had it from 3 completely different triggers, none of which seem likely to alter oxygen levels or muscle metabolism (well, maybe the T2). How does temporary remission get triggered? Obviously it adjusts something in the body, but there are just too many possibilities to consider, and on top of that are possibilities researchers don't even know exist yet.

 

[Inca]

I'm better in morning in summer..I wake up early as it gets light so early and have dog to take out so throw some clothes on...sometimes just over PJ's ..don't bother with shower its too exhausting..just get on my mobility scooter and take my dog out...like to see the sunrise but it depends what time it comes up. I think getting some fresh air first thing helps.

Winter is harder with arthritis too..temps are often below 10 up here and near freezing (or below) overnight...It's a real struggle getting up and getting him out then.

 

[Wishful]

don't bother with shower its too exhausting

If showering is a major challenge, and risk of PEM, be aware that daily showering isn't necessary. There was a thread about bathing/showering, and the general agreement seems to be that once you break the daily showering routine, your skin microbiome adapts and you don't get as smelly as the daily showerer who skips a day. In winter, I bathe every week or two (I don't have indoor plumbing), and don't notice any significant body odour. In summer, I'm more likely to sweat, so I'll rinse off with water (no soap).

So, you can ignore the soap commercials, and figure out how often you need to scrub all over with soap. Just keep in mind that you might go through a few days of smelly before your microbiome adjusts.

temps are often below 10 up here and near freezing (or below) overnight

I've had days like that ... in June and even July and August. Winter can go below -40. I think you can see why I'm reluctant to bathe daily in winter. However, I like crisply cold days, and do a lot more walking than in summer heat.

 

[Inca]

If showering is a major challenge, and risk of PEM, be aware that daily showering isn't necessary. There was a thread about bathing/showering, and the general agreement seems to be that once you break the daily showering routine, your skin microbiome adapts and you don't get as smelly as the daily showerer who skips a day. In winter, I bathe every week or two (I don't have indoor plumbing), and don't notice any significant body odour. In summer, I'm more likely to sweat, so I'll rinse off with water (no soap).

So, you can ignore the soap commercials, and figure out how often you need to scrub all over with soap. Just keep in mind that you might go through a few days of smelly before your microbiome adjusts.


I've had days like that ... in June and even July and August. Winter can go below -40. I think you can see why I'm reluctant to bathe daily in winter. However, I like crisply cold days, and do a lot more walking than in summer heat.

I don't think I could survive -40!!! Even the coldest parts of our country don't get that I don't think!

I try and shower and wash my hair twice a week and usually do it before bed so I can go straight to sleep I do what we used to call a 'strip wash'. If I didn't do it before going out I try and do it when get undressed to go back to bed. If I'm really short on spoons the dog gets priority so he's at least had his walk and good charge about on the nearest field. Hopefully I can manage a short game of ball just in the garden (he has an automatic ball launcher toy too so I don't have to waste energy continually throwing it!!) just sit by it and press a button!!

 

[Wishful]

I don't think I could survive -40!!!

It's really not that bad, when properly dressed and used to it. I heard warnings like "exposed skin will freeze within minutes", yet my face was uncovered for a 6-hr walk at -40, and no sign of frostbite. I've experienced +40C and -40C, and I prefer the winter option. At -40 I can put on another layer, but at +40C, even no layers doesn't let me feel comfortable.

The native wildlife handles the cold without complaints too.

FWIW, neither temperature extreme has a noticeable effect on my ME.

 

[Judee]

Mornings are so hard sometimes. Its when I feel my worst and also the most negative about myself.

 

[JasonPerth]

Currently housebound/moderate with Dysautonomia/ MECFS

100% worse in the morning

In the morning im a 0/10

In the afternoon after lunch i dip in and out of 1/10, sometimes the food from the first meal of the day puts me back down to a 0/10, likely from McAs? Dysautonomia?

And after dinner until about 3am when i get sleepy im a 2/10.

My cognitive ability is better the later it is if im not crashing. I also find that when im freezing cold, i can do more.

 

[JasonPerth]

My answer is - Mostly
On the odd occasion i will wake up as i felt before i slept “tired but wired” this might be because the sleep i had was horrible. Strangly the more i sleep and the more naps i take, the worse i feel. Its like im forever trying to catch up on sleep and keep waking up feeling horrible. Normally when i take naps aswell because i crash after like dinner, i never stay asleep, i always wake up like instantly gasping for air or within 30 minutes. Its very rare for me to nap for 1 + hour

 

[Violeta]

It's horrible. I woke every 1/2 hour last night and am so sick this morning. Dysautonomia much worse. Someone in a FB group said it is a lack of dopamine. I haven't been consistent with the tyrosine and butcher's broom, will get back to that, and have to figure out what I did to make myself so much worse.

 

[JasonPerth]

It's horrible. I woke every 1/2 hour last night and am so sick this morning. Dysautonomia much worse. Someone in a FB group said it is a lack of dopamine. I haven't been consistent with the tyrosine and butcher's broom, will get back to that, and have to figure out what I did to make myself so much worse.

Yeh im unsure. I never had this issue when my ME was mild, my Gut was OK with some sensitive foods like Dairy, and my Sleep was a standard 12-1am to 7am everyday, with no breathlessness and no Dysautonomia and no issues napping. I never had the “tired but wired” feeling.

Im assuming now that im bedbound and severe with NEW dysautonomia symptoms, im simply in a 24/7 PEM/Crash? As im now always having the “tired but wired” feeling which is likely what keeps waking me up aswell as a constant aggrivated gut no matter the food, brain fog and breathlessness i didnt really experience 2016-2022.

As my sleep and symptoms have all deteriorated in line with my stomach, i do wonder how much the gut has a role in overall ME / CFS health. I did see a Researcher at the NIH conference talking about Positive RNA viruses being in the gut, I personally have no idea what virus i got in 2016 that caused all this, i wish i could know