Utsikt
Senior Member (Voting Rights)
Always on my left. Have never tried swapping.
Needing to lie flat
- Thread starter Jonathan Edwards
- Start date
Lisan_Al_Ghaib_87
Established Member
I know that its extremely speculative and very farfetched but I was reading some time ago Sagan's The Dragons of Eden where he was speculating the "fear of falling" as an innate, evolved mechanism rooted in the history of human ancestors. He cites Washburn's theory that our ancestors lived in trees, where falling was a frequent and deadly danger thus the instinctual fear of falling is specifically tied to the dangers posed by gravity to tree-dwellers. In this prism we can consider the need to lay down/flat or secure our position during PEM or even at baseline ME/CFS as an internal danger response to whatever goes continuously wrong in cellular level which can cause the aforementioned incidents i.e "falling from the tree".
obeat
Senior Member (Voting Rights)
PUTTING FEET UP
We have joint position sense in our nerves so our brain always knows where our body is. What if the need to put our feet up is to reduce that sensory input?
NEEDING TO LIE MORE FLAT
Our semicircular canals record our body position so again it looks like an attempt to reduce sensory input.
I don't understand why the need to reduce sensory input to the brain is so urgent.
This seems to be different to autism where sensory overload bills up over a period of time.
Oestrogens modulate sensory synapses
Just my idle musings
We have joint position sense in our nerves so our brain always knows where our body is. What if the need to put our feet up is to reduce that sensory input?
NEEDING TO LIE MORE FLAT
Our semicircular canals record our body position so again it looks like an attempt to reduce sensory input.
I don't understand why the need to reduce sensory input to the brain is so urgent.
This seems to be different to autism where sensory overload bills up over a period of time.
Oestrogens modulate sensory synapses
Just my idle musings
Felis Catus
Senior Member (Voting Rights)
I find lying on my side exhausting. As if it requires putting in strength to hold myself in that position.
My HR lying on my side is higher than lying on my back or front, as @Utsikt said for 5-10 bpm.
I used to sleep on my side before getting ill which I can't imagine now.
Most of the time I'm awake I lie on my back. As soon as I'm a little bit worse, I start feeling something, a sensation, in my lower back and the urge to turn to my front. Lying on my front then feels better (it actually always does but the view is worse and life is more impractical).
The worse I am, the more lying on my front feels inadequate. It feels as if my body wants to sink deeper like @StellariaGraminea has mentioned.
My HR lying on my side is higher than lying on my back or front, as @Utsikt said for 5-10 bpm.
I used to sleep on my side before getting ill which I can't imagine now.
Most of the time I'm awake I lie on my back. As soon as I'm a little bit worse, I start feeling something, a sensation, in my lower back and the urge to turn to my front. Lying on my front then feels better (it actually always does but the view is worse and life is more impractical).
The worse I am, the more lying on my front feels inadequate. It feels as if my body wants to sink deeper like @StellariaGraminea has mentioned.
ScoutB
Senior Member (Voting Rights)
I've always assumed my need to lay down was something like this (maybe something more subtle and complicated, but along these lines) because my fogginess definitely gets worse the longer I am sitting/standing still. Being vertical is less bad if I am slightly moving/walking (at least in the short term, not sure about PEM) -- which really makes me think blood flow again.
It is interesting to read these posts! I definetly have an "urge" as well, but it's not the main symptoms of needing to lay flat. My main symptom is that I feel I cannot breath, and as soon as I bring my head & legs on the right levels I can breath in and out properly again.
Also I think the dutch doctor (forgot the name) that did some blood flow during tilt table testing did find blood flow abnormalities even in people that didn't have symptoms or signs of (bp, hr) orthostatic intolerance. No idea where the study is though, or how well it was setup...
Also I think the dutch doctor (forgot the name) that did some blood flow during tilt table testing did find blood flow abnormalities even in people that didn't have symptoms or signs of (bp, hr) orthostatic intolerance. No idea where the study is though, or how well it was setup...
ScoutB
Senior Member (Voting Rights)
Yes, I was thinking about these too -- assuming you mean the van Campen studies (discussed on S4ME here, among other places). If I recall correctly they are using a slightly different technique than has been used previously so we'd like their studies to be replicated, but definitely intriguing.
In a modern vehicle, I wonder how many warnings of immediate failure (Your engine is about to blow up!!!) are due to failures of the sensors or the processor, rather than actual vehicle problems. I doubt that humans evolved failure-free sensor/processing systems. There's probably a long list of known failure modes, with the prevalence decreasing according to risk to survival (at least until past breeding age).
obeat
Senior Member (Voting Rights)
@Creekside nice analogy.
I'm wondering if our difficulties with using our arms are also sensory related. Proprioception enables our brain to know where our body is in space.
If I reflect on the past 10 years then for me there also seems to be a correlation between severity of OI and severity of being able to use my arms. In 2016 my OI became significantly worse so I ended up in bed permanently and I had huge difficulty getting washed or using my arms for anything. I stopped cleaning my teeth and started using dental tablets.
I've had a significant lessening of OI since 2024 and it is definitely easier for me to use my arms. So is the arm problem sensory and not muscular.
I'm wondering if our difficulties with using our arms are also sensory related. Proprioception enables our brain to know where our body is in space.
If I reflect on the past 10 years then for me there also seems to be a correlation between severity of OI and severity of being able to use my arms. In 2016 my OI became significantly worse so I ended up in bed permanently and I had huge difficulty getting washed or using my arms for anything. I stopped cleaning my teeth and started using dental tablets.
I've had a significant lessening of OI since 2024 and it is definitely easier for me to use my arms. So is the arm problem sensory and not muscular.
Felis Catus
Senior Member (Voting Rights)
This seems to be the case for me, too.
Initially when I got ill, I had a problem with using my arms above the shoulder level or if I bent down but bending was a problem in itself, so using arms in that position was just adding to it. Then I lost the ability to use my arms while sitting or being reclined.
Since I've become bedboud, my arms feel sooo heavy. They feel weird, not painful but pain is probably the closest to that feeling in my vocabulary.
obeat
Senior Member (Voting Rights)
@Felis Catus
Bending over would be a major stimulus to the semicircular canals and proprioception system.
At my very worst rolling over in bed felt awful.
I have a commode beside my bed and have a pillow in front of it so that when I stand on it ,it limits the awful sensation I get in my feet.
We talk about feeling AWFUL so is this nociception going wrong.
What if our brain sensory system is inhibiting our movement in order to reduce sensory input from the rest of our body.
Bending over would be a major stimulus to the semicircular canals and proprioception system.
At my very worst rolling over in bed felt awful.
I have a commode beside my bed and have a pillow in front of it so that when I stand on it ,it limits the awful sensation I get in my feet.
We talk about feeling AWFUL so is this nociception going wrong.
What if our brain sensory system is inhibiting our movement in order to reduce sensory input from the rest of our body.
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That seems like an unlikely mechanism to evolve, for a rare disorder. A more likely explanation is that it's just altered function in parts of the brain, giving various symptoms, depending on which parts of the brains are affected in which way in individuals.
The thing is, as I keep being reminded of as I’ve lots of appointments, it happens only when (pushing it for how I am that day or max function) or after (PEM) ‘too much’
And I suspect these days the making sure I’ve not been sitting up all the time if I felt before an appointment (just like not using energy cos it’s a good day) but pacing it if I know I’ve got ‘that’ later helps because there’s a limit in the day
I think I learned this intuitively because I was moderately and working full time and it was always the end or at least afternoon of the day I’d be eyeing up just wanting to rest my head on back of the chair and when I got home would have to lie at least on sofa not sit. And all the obvious normal expected patterns if it had been a busier day moving lots then PEM later was eventually flat on back when more well etc. Then the only difference between normal person reaction to those different days (as I’d have to do more than many ill people would do) was the PEM style of symptoms not ‘what did it’. As my body got more worn down by the world not accepting me/cfs so pushing my limits all the time then the line eventually got lower on what I could do in a ‘good day’ vs a norm and that’s what have same PEM but also my body was that much iller even in better days and so on. Until you are so ill sitting becomes ‘an exertion’ and that makes sense if you knew the slow progression over decades and day after day of ‘too much for my limit’ got it there.
My late cat was ill for their later year as well as old (heart wasn’t great I think but other things, probably kidney towards end etc) and I remember thinking we were strangely similar in that flopping down and how they would eventually be lying in those last months to the extent we related to each other.
So the PEM bit is strange in the delay and ability to push thru in first place happening rather than the fact or size of it. Plus the fact if you push thru and when more well kept being put over that you end up not being able to rest - I don’t think ‘wired and tired’ quite explains what is going on, it seems close in symptoms but I wonder whether that is a distraction/red herring way of describing re: cause behind it if we don’t ’hash Out’ that bit to make sure we get what it is precisely.
And I suspect these days the making sure I’ve not been sitting up all the time if I felt before an appointment (just like not using energy cos it’s a good day) but pacing it if I know I’ve got ‘that’ later helps because there’s a limit in the day
I think I learned this intuitively because I was moderately and working full time and it was always the end or at least afternoon of the day I’d be eyeing up just wanting to rest my head on back of the chair and when I got home would have to lie at least on sofa not sit. And all the obvious normal expected patterns if it had been a busier day moving lots then PEM later was eventually flat on back when more well etc. Then the only difference between normal person reaction to those different days (as I’d have to do more than many ill people would do) was the PEM style of symptoms not ‘what did it’. As my body got more worn down by the world not accepting me/cfs so pushing my limits all the time then the line eventually got lower on what I could do in a ‘good day’ vs a norm and that’s what have same PEM but also my body was that much iller even in better days and so on. Until you are so ill sitting becomes ‘an exertion’ and that makes sense if you knew the slow progression over decades and day after day of ‘too much for my limit’ got it there.
My late cat was ill for their later year as well as old (heart wasn’t great I think but other things, probably kidney towards end etc) and I remember thinking we were strangely similar in that flopping down and how they would eventually be lying in those last months to the extent we related to each other.
So the PEM bit is strange in the delay and ability to push thru in first place happening rather than the fact or size of it. Plus the fact if you push thru and when more well kept being put over that you end up not being able to rest - I don’t think ‘wired and tired’ quite explains what is going on, it seems close in symptoms but I wonder whether that is a distraction/red herring way of describing re: cause behind it if we don’t ’hash Out’ that bit to make sure we get what it is precisely.
Rick Sanchez
Senior Member (Voting Rights)
When I tried exercising myself healthy when mild mild (when I didn't know what CFS was). The exercises I struggled with the most in strength training were exercises with arms above the shoulders. Pull ups were just hell. Squatting and deadlifting never felt as bad. They all gave PEM but in the now doing pull ups or chin ups. Something about it just felt awful. Like it was giving me flu induced tiredness right then and there.
On the topic of lying down. There really is some urge to lie on my back. I feel it comes from my spine. At Its worst It's like there is poison within it, and it requires me to lie on my back...
I suffer similarly (and also/particularly with anything that requires using the forearm muscles) and have always assumed that this, in large part, contributed to the ideas about oxygenation and such as these were exactly the complaints first voiced by my father-in-law in the years leading up to his diagnosis of pulmonary fibrosis. Long before he had any direct awareness of respiratory problems, coughing, even shortness of breath, there was the arm fatigue.