Needing to lie flat

[JemPD]

I think that is particularly relevant. My interest in this is to distinguish the need for respite or rest in ME/CFS from the need in conditions said to invoke 'fatigue' - such as heart failure, MS, RA, renal failure, old age. The situation for ME/CFS does seem more like that in a viral infection - where you wouldn't even talk of fatigue, just feeling lousy. I suspect there is still a distinction but it seems closer.

This 100% especially bolded bit

everyone in my life knows I can’t think and sit at the same time. If you want to get any sense out of me, make sure my feet are no lower than my heart.

yeah lol me too.
What’s striking is that if Im for example, in a car reclined a bit & really struggling after a journey - just sitting there... it makes me feel so ill that my brain doesn’t even work to tell me what’s needed.

Carer who used to know me well, once I became unintelligible & unable to communicate she would get out come round to my side, recline my seat fully, & lift my legs onto the dashboard. On one occasion the relief & gratitude was so intense I wept.

it’s just not fatigue by any normal usage AFAIC. Fatigue even exhaustion in my expexperience can be relieved by sitting down, but this feeling can only be ‘relieved’ by lying flat and not on something soft.

It’s weird my upper torso must be on something firm - like rib cage needs to be supported. And feet simply must be either level with or above head.

someone above talked about lying down on floor, on anything outside in the rain even. I have been staggering 2m from the car to the front door or even being pushed in wheelchair and just had to get out of chair & lie down on the path in the rain. One carer thought I was just doing it for attention. which was upsetting!


Also curious about the 10 min thing others mentioned … yes I noticed that too. Wondered how I could feel completely different after about 10 mins flat position.

I suspect I said all this, or perhaps similar, on this thread before sorry if I repeating or being inconsistent. This illness is so flippin complicated & weird!

 

[Hutan]

Sometimes when I stand, doing the dishes or cooking dinner, I am fine to start with and then feel very unwell and my limbs are heavy. I feel that I must lie down or sit with my legs up. Often then I have to stop what I am doing, even if it is in the middle of grilling something or whatever and have a rest for a bit.

A few of these times I have taken my blood pressure and my pulse pressure is narrow. I forget the numbers, I have reported them here, I think a pulse pressure of around 20. Also my heart rate increases.

There was a time when I was going into the city to see my doctor. It was a five minute walk from my home to the tram stop, and then I was standing at the tram stop for a while because one tram went past without stopping, and then the tram I was on was crowded and I had to stand the whole way (only maybe 15 or 20 minutes but I felt terrible). It was then a 5 minute walk to my doctor's office. I then sat for maybe 30 minutes, legs down, wanting to lie down. It was then time for my doctor's appointment. The doctor took my blood pressure, and the systolic was very high, I can't remember what the diastolic was. My systolic blood pressure is normally low, 110.

I can see how people with ME/CFS were diagnosed with being agoraphobic. It would be easy to think that I had had some reaction to being out of my home. But it wasn't the crowded tram that was the problem, I had travelled on crowded trams for years. It was the standing.

 

[poetinsf]

My interest in this is to distinguish the need for respite or rest in ME/CFS from the need in conditions said to invoke 'fatigue' - such as heart failure, MS, RA, renal failure, old age.

I used to say that CFS should stand for chronic flu-like sickness, and PEM is really a post-exertional sickness. It certainly felt like an infection. As I progress toward recovery though, PEM seems to gradually become closer to normal fatigue, with an element of depression. It's kind of like the fatigue 2 days after a hard exercise when the high from the exercise dissipates and you are left only with fatigue and blue. Just an anecdote as usual, but my thought now is that ME/CFS fatigue is different from "normal" fatigue more in severity rather than the kind.

 

[AliceLily]

I have not read this thread, but I’m just chipping in to say that I experience four reasons to lie down (I have LC, POTS and about to be diganosed with ME:CCC):

1. POTS: Self explanatory
2. Crushing fatigue
3. Feeling of being under many G
4. Dizziness (mistakenly wrote nausea)

This has been the case since day one.

Is POTS self-explanatory though?
Is the implication that a fast heart rate makes oneness to sit down? Tachycardia is normal after exercise like going upstairs quickly and that doesn't normally lead to a need to lie down.
Is the reason to lie down actually one of the others here too?

The need to lie down comes from what @Utsikt mentioned as number 3." Feeling of being under many G". The body starts to weigh very heavy and pulls down on you. I don't know what causes it.

 

[bobbler]

The need to lie down comes from what @Utsikt mentioned as number 3." Feeling of being under many G". The body starts to weigh very heavy and pulls down on you. I don't know what causes it.

Yes but…

that body being heavy and things like head (and arms hence then needing support) needing to get down and be supported

is separate to a feeling when I’m eg lying down need need to get even more flat sometimes as I feel really ill

and I think (don’t know whether I’m mixing things up) that there is sometimes almost a vertigo-like aspect to that - not in it spinning in the normal way but in being unable to get to a point where the body is ‘comfortable’ heakth-wise and not almost out of breath (even tho I’m not out of breath) type of ‘need to get flatter’

there are times when I desperately need to not sit up but if I make a pillow arm chair for my arms and all back shoulder neck from waist up etc then I can manage to be a bit more inclined than flat, so it’s all about the muscles being able to be supported and also relax/stretch enough, then other times when the head and other aspects are involved and it is absolutely get head flat (and getting those other elements like arms supported is harder when face is buried against the mattress). On both I often will have to get one side of face totally supported then minutes later the other, then back of neck and it’s like I can’t have enough of everything that needs the support all at the same time as my body/head would need in this way.

there are a few bits I’m trying to think through and string together that are worth mentioning

like the fact that I actually- including when I’ve slept and woken from exhaustion - am heavy on my body at those times. Part of it might be how knocked unconscious I am or unable to move if not asleep but I’d regularly get that sgonising crushed ear from lying on it too hard unless I get my pillows bith very plumped and laid out in ways to limit it (I move a lot in sleep to). I’m forcibly jamming onto parts of my head to get even more ‘support’ beyond a point where my ear is hurting from being crushed. But also other body parts eg shoulder or neck. Until I started having pillows between my knees I’d have bright red sides of knees when I woken up if I’d been on my side.

this is a side issue but I remember around the time before I think my ME started looking back I had a period (maybe a year) where most days I’d wake up not knowing where my arms are each day only to eventually locate or realise I’d had them above my head (not sure I can do that now) on pillow and have to try and use the least numb arm to find, lift and carry the other one back down. Then there’s be the pins and needles as they came back. I remember waking and couldn’t move my head with exhaustion and still asleep and really only know where my face was that was still and not in a position to move.

 

[AliceLily]

that body being heavy and things like head (and arms hence then needing support) needing to get down and be supported

is separate to a feeling when I’m eg lying down need need to get even more flat sometimes as I feel really ill

Yes, I know what you mean here. I've had that too in my severer years. It's not just a problem with standing, there is sitting, even lying down you can feel a crushed weight. There is much to this illness that it can be overwhelming trying to explain all the situations and it can be hard to remember to include them.

 

[Sasha]

The need to lie down comes from...." Feeling of being under many G". The body starts to weigh very heavy and pulls down on you.

I find it odd that that's not the sensation for me - in fact, when trying to describe it to doctors, I've said, 'It doesn't feel as though my body is heavy or like I'm being pulled down by gravity.' I wish it did, because it would be easier to explain. I don't have a word for what it feels like, but it definitely isn't this.

 

[Kitty]

I find it odd that that's not the sensation for me

Me neither. The only time I feel weight is with that 'wearing a lead suit' type of fatigue. But it happens just much when sitting or lying down as standing up.

In some ways the experience of OI's similar to low blood pressure, though it's not the same. Standing up when my blood pressure's too low makes my heart hammer like crazy, which never happens with OI.

It probably resembles low blood sugar most closely. Same weak legs, shaking hands, difficulty processing thought and speech, but also the blurred vision. It takes several attempts to bring text into sharp focus, if I can do it at all.

The urgent message coming from my brain telling me to sit down is different, though. With low blood sugar everything goes really vague, and I know something's wrong but can't work out what it is. There's no doubt in OI, the message is so loud and insistent that it can make me start to feel panicky if there's nowhere to sit.

 

[Sasha]

The urgent message coming from my brain telling me to sit down is different, though.

I've been wondering about this lately. I'd have described the experience as my body screaming at me to lie down but now I'm wondering whether that's a learned response - that I've found that lying down relieves the symptoms and so now my brain has learned to tell me what to do. No idea whether it makes sense but lying down doesn't feel like a choice.

 

[Kitty]

I've been wondering about this lately...I'm wondering whether that's a learned response

It might be. I always knew I needed to sit down, the same way I know I need to go to the toilet, but I guess we have to learn what that feeling means?

I'm not sure when my OI began, I only became aware of it when I started school and encountered rules about things like standing in line. Even then it was just an urge without any conscious thought attached.

It wasn't as bad in childhood as it's been since ME/CFS, though. If I tried to stand for a whole assembly I'd black out, but I could manage five minutes in the lunch queue.

 

[AliceLily]

I find it odd that that's not the sensation for me - in fact, when trying to describe it to doctors, I've said, 'It doesn't feel as though my body is heavy or like I'm being pulled down by gravity.' I wish it did, because it would be easier to explain. I don't have a word for what it feels like, but it definitely isn't this.

My blood pressure was low in my severer years Sasha. Maybe that was contributing as well.

 

[JemPD]

It probably resembles low blood sugar most closely. Same weak legs, shaking hands, difficulty processing thought and speech, but also the blurred vision. It takes several attempts to bring text into sharp focus, if I can do it at all.

The urgent message coming from my brain telling me to sit down is different, though. With low blood sugar everything goes really vague, and I know something's wrong but can't work out what it is. There's no doubt in OI, the message is so loud and insistent that it can make me start to feel panicky if there's nowhere to sit.

yes this, except intensely urgently irritated rather than panic. I suppose it's a little like panic but has no fear element just the intense urgency...

my body screaming at me to lie down

and this, in fact i have described it as 'everything in me is screaming at me to lie down'.

I get really impatient with inanimate things that delay it too. I can be heard swearing at the tap to "get a $$$$$$ move on" filling up my water bottle. And i'm afraid i get mad with anyone in the waqy of my lying flat or delaing it too.
The urgency of it, it's not like any other feeling i had.

 

[MrMagoo]

I get the “too many g” and the irresistible urge to just lie down, they are very different but leading to the same result. Kind of like a cold, I don’t care if it’s bacterial or viral, I feel ill.

Sometimes I can start to feel faint, yet Ive never fainted in my life, the closest I have managed is a few seconds black out whilst staying upright, and talking.

 

[Kitty]

yes this, except intensely urgently irritated rather than panic.

Yes, that's a much better way of putting it. I couldn't think of the right word, but I think agitated would better for me.

I get really impatient with inanimate things that delay it too.

Yup! I shout at cupboard doors for being open (which I left open), freezer bags for having knots in them (which I tied), bin liners for not wanting to come out of the bin (which I overfilled), and the poor cat for being anywhere within 15 metres of me when I need to get to the sofa.

The urgency of it, it's not like any other feeling i had.

To me it feels like being in the baking sun when you're unusually prone to sunstroke (I reckon my ancestors came from somewhere that only gets daylight half the year). My brain's telling me that this is a threat, and I need to escape it.

 

[MrMagoo]

To me it feels like nodding off, one minute you’re thinking “don’t do it, just keep going” and the next, you’ve lay down.

 

[AliceLily]

To me it feels like nodding off, one minute you’re thinking “don’t do it, just keep going” and the next, you’ve lay down.

I think you are describing the 'no choice but to lie down'?

 

[MrMagoo]

I think you are describing the 'no choice but to lie down'?

It’s automatic, there is no choice. No thought.

 

[Eddie]

One other factor that I have not seen mentioned yet is "pooling" of blood in my hands and feet when upright. Especially in warm temperatures my feet and hands will become red/purple and feel somewhat swollen when standing. They also become extremely itchy and are a factor that causes me to sit after walking around.

This redness returns to normal quickly after lying down. This problem did not happen pre-ME and took many months into my ME before I noticed it.