For me, it'e easiest to fall asleep lying on my left side. I get into bed, lying on my right side for a while, then I roll over and it "feels right". What is being sensed where, and processed where, remains a mystery. There must be some data on whether people can learn to change their preferred sleeping position. Easy to change, or difficult, or almost impossible?
Needing to lie flat
- Thread starter Jonathan Edwards
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That reminds me of a vehicle (popular American brand?) that would prevent starting if a rear brake light (maybe other lights too) was burned out. Who thought that was a good design decision?
The developing brain probably makes some random connections that turn out to be a bad "decision". If it's obviously bad early on, it may get pruned out. If it causes problems decades later, it may not get pruned out, especially if it has some benefit. Are phobias completely bad, or did they have some evolutionary benefit for some people?
I still wonder about the possible evolutionary benefits of strong irrational beliefs.
For the past 20 years "needing to lie flat" has been my mantra
I've been taking high blood pressure medication for many years. Recently I discovered that without blood pressure medication I'm 120/80 most of the time lying down, but 150/100 pretty much all the time I'm upright.
I've said for years that orthostatic hyper(!)tension is not easily diagnosed. It fits with fainting and tachycardia responses. I also note it is a cerebral perfusion technique. Most doctors take blood pressure when a patient is in the office sitting (after a long wait/trek) to the doctors office. Even when a cardiologist looks for orthostatic issues, they are often looking at the shift from sitting to standing.
Also, only the end result is measured, ie, the blood pressure. Often the levels of aldosterone on renin are not measured. My renin levels have been measured multiple times at 10x the normal upper limit. Kidney stones ruled out, doctorly shrug. I point out that if the renin levels are pinned high, but aldosterone is normal, then it is likely the signal is being ignored and the body is compensating using backup systems.
My greatest successes with supplements and the ones that I continue to use, have been ones that reduce blood pressure. My current regime of lowering blood pressure and being careful about glucose spikes has given me a huge amount of energy, both physically and mentally.
I've been taking high blood pressure medication for many years. Recently I discovered that without blood pressure medication I'm 120/80 most of the time lying down, but 150/100 pretty much all the time I'm upright.
I've said for years that orthostatic hyper(!)tension is not easily diagnosed. It fits with fainting and tachycardia responses. I also note it is a cerebral perfusion technique. Most doctors take blood pressure when a patient is in the office sitting (after a long wait/trek) to the doctors office. Even when a cardiologist looks for orthostatic issues, they are often looking at the shift from sitting to standing.
Also, only the end result is measured, ie, the blood pressure. Often the levels of aldosterone on renin are not measured. My renin levels have been measured multiple times at 10x the normal upper limit. Kidney stones ruled out, doctorly shrug. I point out that if the renin levels are pinned high, but aldosterone is normal, then it is likely the signal is being ignored and the body is compensating using backup systems.
My greatest successes with supplements and the ones that I continue to use, have been ones that reduce blood pressure. My current regime of lowering blood pressure and being careful about glucose spikes has given me a huge amount of energy, both physically and mentally.
I started going to sleep on my left side many years ago after talking to my GP about treating serious acid reflux, and he pointed out that the entrance to the stomach does not sit in the middle top of the stomach but to one side (the right). So if you have the entrance facing upwards, by sleeping on your left, it helps control reflux through simple gravity.
So I tried it and it does help.
That said, it was the Omeprazole that did most of the lifting in dealing with the reflux. But I still go to sleep on my left side to this day, and far as I know spend most sleep time there, especially during maybe the first 2/3 of sleeping.
I used to be a front sleeper, (more a kind of three-quarter position really). As soon as I got ME I switched to being a side sleeper, with a little bit of back sleeping, and with no intentional input from me, it just happened. Now I cannot front sleep at all. One of the weirder changes brought about by the disease.
Would be interesting to know if others have experienced a change in sleep position after getting sick.
Varda
Senior Member (Voting Rights)
Since becoming ill I need to prop up my body with pillows and blankets all the time.
Even though I lie down, I feel as if I am falling, and I need stuff around me to keep my body in a fixed position and give support. It’s definitely something to do with Me/Cfs, as I didn’t feel that before. I can no longer sleep on my back, for instance, because I feel I am not supported. I need to sleep on a side with pillows all around me.
I think I should buy a weighted blanket, see if I can tolerate it.
What helped me most with acid reflux since becoming bedbound is lifting the head of the bed. Sleeping on the left side helped a little, but not enough. I no longer have acid reflux thanks to lifting the bed.
For a long time I slept in "Superman flying pose". Any pressure at all caused tingling after about 5 minutes, so that was the pose with the least pressure anywhere. Even the hands had to be flat.
In the improved better days I could sleep on my side, but often there I kept having a sense of falling over, as if the muscles were too tired to support being in that position.
It has always helped to start side sleep with the currently active nostril on top. They alternate so generally one is in use while the other is clearing.
I still have regular occasions where there is a stitch in my right side just under the ribcage. Gallstones have been ruled out. Since the dull pain is stronger based somewhat on fatty meals, I suspect an irritated gall bladder. When this happens I find sleeping right side up is uncomfortable but sleeping on my right side, which applies pressure, works.
I also have lots of persistent itching, mostly in the arns, the kind where almost a single pain sensor is expressing its displeasure every few seconds for days on end. I find sleeping over top of the itch with a bit of pressure often calms it
In the improved better days I could sleep on my side, but often there I kept having a sense of falling over, as if the muscles were too tired to support being in that position.
It has always helped to start side sleep with the currently active nostril on top. They alternate so generally one is in use while the other is clearing.
I still have regular occasions where there is a stitch in my right side just under the ribcage. Gallstones have been ruled out. Since the dull pain is stronger based somewhat on fatty meals, I suspect an irritated gall bladder. When this happens I find sleeping right side up is uncomfortable but sleeping on my right side, which applies pressure, works.
I also have lots of persistent itching, mostly in the arns, the kind where almost a single pain sensor is expressing its displeasure every few seconds for days on end. I find sleeping over top of the itch with a bit of pressure often calms it
That was similar to mine for years thru moderate getting more severe but more snow angel crossed with having arms doing something like the ‘vogue’ pose eg arms bent and palms flat but trying to have them up around shoulders but arms not raised to high above head as they’d go completely dead.
It felt very light as if I was ‘on top of’ the mattress. I miss that bliss. I don’t know if that was just really licking out with the mattress too and will never get it again. Tho I did know I moved a lot ie every 20mins thru night so it’s not quite perfect.
But then other injuries including around shoulder area (scuppering front sleeping which is a nightmare) but other parts of body too combined with struggling with a replacement mattress scuppered that. I don’t know whether it was the mattress or the me/cfs or other things that even the mattress of front of thigh or kneecap can be an issue after x time depending on the day. And I’ve goodness knows how many pillows that get stuffed whichever gap needs it at the time to fix a pulling leg or mattress catching knee etc. Because any other angle there are bends vs if lying front down
Anyway despite what it does to some of these pretty agonizing injuries when I get the really ill and desperately have to ‘lie flat’ even tho I’ve been almost flat then it tends to mean having to go in my front the best I can. And then change cheeks every so often because those need ‘supporting’ . And I really do feel very unwell when it happens ie it’s more than just a feeling heavy type thing closer to a fsinty/collapse feeling nauseaous in head and body but not nausea more like the 'just before you faint' type thing (even though I’m not upright)
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Jonathan Edwards
Senior Member (Voting Rights)
That would be my working explanation. As to why, that is the mystery.
It happens in cerebral lupus too. The two situations may be quite different, but maybe not so much.
Kitty
Senior Member (Voting Rights)
I wonder if it's a muscular signal in my case. I'm moderate, so I don't always need to lie down; sitting's usually enough.
My muscles start to fail rapidly when I stand or walk, and it seems to be that which sets off the panic alarm. I can get up and walk to the bathroom, then return after a couple of minutes' recovery time sitting on the loo, but it's hard to repeat the trip there and back without a longer rest.
It's difficult to be sure where the signal comes from, though.
My muscles start to fail rapidly when I stand or walk, and it seems to be that which sets off the panic alarm. I can get up and walk to the bathroom, then return after a couple of minutes' recovery time sitting on the loo, but it's hard to repeat the trip there and back without a longer rest.
It's difficult to be sure where the signal comes from, though.
Can you tell us more about that?
Liie
Senior Member (Voting Rights)
I've guessed that it's because of insufficient cerebral blood flow because of automatic nervous system dysregulation of the blood pressure. Same as for POT.
But I have no real knowledge of any of those things.
Edit: For a long time I though it was because of muscle fatige, and that confused me because I don't feel that I have a problem with my muscles. The blood flow explanation feels like it fits my symptoms much better.
But I have no real knowledge of any of those things.
Edit: For a long time I though it was because of muscle fatige, and that confused me because I don't feel that I have a problem with my muscles. The blood flow explanation feels like it fits my symptoms much better.
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Jonathan Edwards
Senior Member (Voting Rights)
Cerebral lupus is a situation where brain water content increases, apparently in response to antibody complexes or possibly anti-neuronal antibodies getting into brain. Intracranial pressure rises and blood pressure rises. A characteristic sign of impending cerebral lupus crisis is that the patient lies flat and becomes withdrawn. They can be talked to but they are not keen to do so.
This is probably a very different situation from ME/CFS but it would fit with the idea of lying flat because the sensory system is signalling to do so urgently. And it persists. I think it may not be relevant but since we are discussing water content in white matter it came to mind.
I think it may be a useful illustration that treating all such behaviour as the same 'sickness behaviour' may lead to missing important and unusual things going on in ME/CFS.
obeat
Senior Member (Voting Rights)
This is the usual explanation but many of us do not have heart rate or blood pressure changes. Where is the evidence of the autonomic system not working. We need to think of other explanations for our symptoms e.g.sensory signalling.
My 25-year-old nephew has severe neuropathic pain following a thoracotomy. when the pain is extreme he has no option but to lie flat and not move for several hours. That's sensory.
Thank you @Jonathan Edwards. Certainly the need to lie down is a clear and urgent signal. I overdid it some days ago, and I'm still finding myself needing to be flat most of the day. There must be clues in that felt need.
StellariaGraminea
Senior Member (Voting Rights)
This makes perfect sense to me. Have had exactly the same experience so many times. I first noticed the craving to "get flat" in the months after Covid (when I was continuously ill & this was one of many symptoms). Like you describe, at my absolute worst even "flat" wasn't flat enough, I craved an even greater degree of flatness as if to sink deeper into my bed in some impossible way, like you say, towards the earth's core.
If I tried to ignore the craving to get flat it would get louder and louder, impossible to do any other task or even think or talk until I got flat.
The OI has improved in last few years so haven't had that need to get flatter than flat in a long time. Now my need to get flat is not as urgent or severe as then, but it's still necessary. I can ignore it for ?5-10mins, it varies... If I ignore longer than that and keep upright, I start feeling v. unwell and can take hours to recover.
Also resonate with the person who noticed in Unrest film everyone had their feet/legs up. I find it v. hard to sustain sitting with feet on floor even now, though my OI has improved. 99% of the time sitting I have my feet up if at all possible.
Kitty
Senior Member (Voting Rights)
Absolutely. In any case, 'sickness behaviour' due to a nasty bug doesn't have the urgency of ME/CFS. You want to lie down because you feel crappy, not because your brain's insisting the world will end any second now if you don't.
V.R.T.
Senior Member (Voting Rights)
Also when you're severe ignoring that urge can lead to absolutely brutal crashes.
Chandelier
Senior Member (Voting Rights)
Do you wear the watch on your right wrist? Does the measurement stay consistent if you wear the watch on your other wrist?