Needing to lie flat

8/9 years ago after I finally got diagnosed with CFS I was mild severity and trying to keep my job. I was on an extended gradual return to work and tried to increase my hours I got stuck at 15 hours a week and eventually that failed as I couldn’t maintain reliable attendance. After doing 5 hours working (sitting at table) at home particularly if telephone meetings were involved I would have to lie down on my sofa for an hour - my brain would be numb and I felt completely drained. After an hour I would regain enough capacity to make food and watch tv.

I had no knowledge of orthostatic intolerance POTS until around a year after this. I then spent a further few years thinking that wasn’t relevant to me because I have hypertension and never feel faint so POTs not relevant . I still have to lie down if I’ve been out at a family event, if the event is in someone’s house I’ve been known to go for a lie down eg one family have a conservatory with a sofa.

I am moderate but have better days - on worst days I’m in bed and on the sofa with high percentage of my time feet up. I can still do stuff outside the house only if it is sitting down and keeping standing to minimum especially queuing.

I’ve never had a severe viral illness. The worst viruses I’ve had were Chickenpox as a young adult and then Covid 2 years ago. I know I spent plenty of time lying in bed or on. Sofa after both but I in retrospect I felt worse when trying to work because of the cognitive numbness as well as physically drained. But I wasn’t trying to use my brain when I had chicken pox in my 20s as I was off sick for 3 weeks or however long.
 
Spartacus said:
Very suprised to see so many people here who do not have to spend most of their life horizontal!
For me it has become my most disabling symptom as it means I can't sit upright for long enough to go anywhere, even the hospital.
My symptoms began with a very sudden onset of neurological type symptoms (loss of balance, lack of coordination, dizziness), which came on in attacks. In between attacks I was perfectly normal. During an attack, I would develop a deathly pallor, lose my vision and just knew that I had to lie down or I would pass out. I would hail a black cab outside my office and get home as quickly as possible, and then blackout for several hours on my bed fully clothed. It never felt like falling asleep it felt like passing out.
Eventually my symptoms became permanent. Now if I am upright for too long, I become breathless and develop crushing chest pain, which I assume is my heart (?). So I have no alternative but to lie down, as the alternative seems to be dropping dead. After 25 years of this, my default position is always lying flat in bed.
Of course I have never been tested for any kind of OI. When I was diagnosed, nobody ever talked about OI. Also, this is the UK after all, and nowadays I can't even make contact with a GP, let alone contact one who knows anything about ME.
Does anybody else relate to these symptoms? Or am I an anomaly ?
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I relate.
 
Jonathan Edwards said:
I am suggesting that this is not just a severity thing. Feeling exhausted or fatigued and being unable to tolerate posture or environment are likely to have very different underlying processes.
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Maybe, maybe not. The symptomatic manifestation could be radically different for similar underlying processes, especially when the brain is involved. Inflammation on certain parts, for example, could create hypersensitivity to sound/light. Another a few mm away could create OI or something.

As for the fatigue, I'm constantly going through whole slew of types. In a mild PEM, I can sit up and take care of ADL even though I can't motivate myself to do mentally taxing work. Today, after 3 months of whirlwind travel and then settling in NYC, I keep crawling back to bed. It's hard for me to imagine two different processes are responsible for my sit-up fatigue and lie-down fatigue.

I still think PEM is what separates ME/CFS from garden variety fatigue/sickness, sit-up or lie-down. Normal fatigue/sickness should either go away or stay the same. ME/CFS fatigue gets worse next day after a minor exertion. As long as they study patients with PEM, I'm ok with that. The only issue I can think of is whether time spent lying down would be a good measure for fatigue if your fatigue allows you to sit up all day long. I think it still is valid measure. I'll bet you end up spending more time lying down, even if it is only an hour or less, when you are fatigued, especially if you try to work though the fatigue instead just sitting down all day.
 
poetinsf said:
I'll bet you end up spending more time lying down, even if it is only an hour or less, when you are fatigued, especially if you try to work though the fatigue instead just sitting down all day.
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I doubt that is always true. A lot of organ failure related fatigue, particularly in the elderly, can lead to people never going to bed but sleeping in a chair. For cardiac and pulmonary disease it probably has a specific basis in part relating to pulmonary venous pressure rising when flat.

An interesting thing I discovered at a rural museum in Myringen is that two or three hundred years ago beds were very short because everyone slept sitting up or at least propped up. The myth was that if you lay down the devil would sit on your chest and crush the breath out of you. It seems very likely that this was a reflection of the fact that houses were full of smoke because they had open wood fires but no chimneys and much of the population may have died from right heart failure secondary to lung disease in their fifties and sixties, gasping for breath and sitting up.
 
Jonathan Edwards said:
An interesting thing I discovered at a rural museum in Myringen is that two or three hundred years ago beds were very short because everyone slept sitting up or at least propped up. The myth was that if you lay down the devil would sit on your chest and crush the breath out of you.
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I've seen quite a few of these beds in British stately homes. (Don't judge me, my mam was in service and liked to be taken to 'look round' them—i.e., check them for dust.)

But the old beds that survive are barely four feet long, even elaborate ones in huge staterooms that were hung with priceless Chinese silks. Some are significantly wider than they are long.

It just seems to have been thought unhealthy and unnatural to sleep lying down—a sentiment some people with nighttime leg pain probably concur with. I sleep much better if I can do the first three or so hours sitting on the sofa with my feet on the floor, at which point I can stumble into bed without waking up enough for the pain to set in.
 
Maybe once a week I am completely overcome by the need to lie flat, completely flat on a solid floor, not a soft bed. And definitely not with my legs up because it feels as though it takes a bit of energy to keep them balanced and in place and at this point I have no energy whatsoever left to even move an arm. After 15 minutes or so I'm good to go again.

I find it almost impossible to describe how I feel beforehand - overwhelming physical exhaustion so intense that lying flat is an urgent imperative. If I didn't I would have to sit down and would feel sick/ill/ nauseated and probably start to panic a bit.

Sometimes I feel dizzy after bending over beforehand and sometimes not so I don't have a sense it is OI related.

Unrelated: Unlike what I've read many times here, when I'm lying down for any reason I'm quite unable to think and can't recall names, events etc. As soon as I stand up I feel as though I have control of these things again. This happens every single time I lie down, not just the above occasions.
 
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My sister has Hashimoto and needs to sleep with her head elevated too.

From Dysautonomia International:
It is recommended to slightly elevate the patient's head during sleep. This is done in order to help (re)condition the patient's body to orthostatic stress.
 
oldtimer said:
Sometimes I feel dizzy after bending over beforehand and sometimes not so I don't have a sense it is OI related.
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I've experienced this since the onset of M.E 33yrs ago. Sometimes the fluid in my ears build up and I have to be careful not bend over too fast, particularly earlier in the day.
 
I'm trying to remember what kept me horizontal when I was in the depth of MECFS. One was what many MECFS patients describe as "profound exhaustion" where the gravity felt ten times stronger and I wasn't able to lift up any part of my body. The other was the nasty ache/fatigue from which I got relief only by lying down. That was the one responsible for my legs on the coffee table or folded under my butt in lotus position while sitting up. I used to pound my legs with a spatula while lying down on my side to get some relief. I still get the ache, but not the "profound exhaustion". OI was never a part of my symptom, though I fainted once in the middle of the night when I got up to drink off the faucet in the bathroom.
 
Haveyoutriedyoga said:
what’s all this? I get immediate symptoms from bending over doing chores
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It could be a number of things. For me, my sudden viral M.E onset started with severe vertigo one morning. I thought I was having a stroke. I experienced this on and off for 6 months, and then the vertigo went away. I had a few test done at the hospital but nothing showed up so it was most likely BPPV. My GP explained to me that sometimes our ear crystals scatter and can bring on vertigo until it settles and our brain gets its equilibrium back.

I had no symptoms for 10 years after that. Then it all came back, and even worse in the last 4 years from a vestibular virus? I'm still dealing with it and it's very distressing. I am so focused on keeping my head straight and balanced that I get distracted and walk into the wall sometimes.
 
Bateman Horn Center put out a video to explain ME/CFS that includes:

"For instance, if they want to have a conversation, they might need to lie down, dim the lights, close their eyes, find a quieter space, take breaks during the discussion, or elevate their legs."

It never occurred to me that there might be a reason I instinctively put my legs up on the backrest every time I lie down on the couch.
 
forestglip said:
Bateman Horn Center put out a video to explain ME/CFS that includes:

"For instance, if they want to have a conversation, they might need to lie down, dim the lights, close their eyes, find a quieter space, take breaks during the discussion, or elevate their legs."

It never occurred to me that there might be a reason I instinctively put my legs up on the backrest every time I lie down on the couch.
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On the flip side a lot of advice for POTS is to elevate the head not the feet. On the flip side of that...apparently that's to get you used to orthostatic stress.
 
forestglip said:
Bateman Horn Center put out a video to explain ME/CFS that includes:

"For instance, if they want to have a conversation, they might need to lie down, dim the lights, close their eyes, find a quieter space, take breaks during the discussion, or elevate their legs."

It never occurred to me that there might be a reason I instinctively put my legs up on the backrest every time I lie down on the couch.
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By elevate legs I assume many of us mean just having them level ie like “put your feet up” in Uk means on a footstool, sit on sofa sideways so feet aren’t on floor.

I do however do a half way house as I have pillows in bed or cushions on sofa so my legs are slightly raised due to an injury but it might also be ME - it’s been so many years now I’ve had to do it

I have had times I’ve literally had to raise them like when I worked a peak time at work and that invented task meant being on feet more. I had to lie with legs right up a wall on that break.
 
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