Needing to lie flat

And I would put them in box 3, making boxes 2 and 3 together fit into Peluso's right hand box.

 

I'm moderately affected, but except for sleep I almost never lie down due to ME/CFS.

This is partly driven by the muscle pain ME causes. Just having to go to the bathroom several times a day is enough to over-use my legs, and they're are at their most painful (deep burning pain, pins and needles etc) when horizontal and relaxed.

As lying down or sitting with my legs raised are the most painful postures of all, there needs to be a driver to make me do it. Experiencing severe OI when sitting upright would be enough, but I don't unless I've got a virus as well. It only kicks in after about 30 seconds of standing still or a few minutes of mixed standing/walking. Sitting down is enough to relieve it.

So either I'm an outlier or there are postural sub-categories that depend on whether the symptoms of leg pain or OI are the worst.

 

You’ve just described decades of my life. Now I can count the good hours as those where I can prop up sitting in bed or very rarely on sofa enough I can use laptop and do normal things like drink etc and don’t feel terrible. They come to an end with a need from your body to lie back down and that comes a lot faster if I eg do a conversation. If I’m downstairs and have been standing for short times I have to dive into my zero gravity and put it right back.

in fact when I didn’t know what it was and could get away with ‘working round it’ eg at uni and be in denial then I was ruled by innately knowing I couldn’t sit in the library between lectures so would have to photocopy all sorts and did do much better in my business degree because that literature was much more online (vs having to go round libraries and stand up to find papers) . Then sat in bed or recline across sofa.

My sofas have never been used to sit the right way. My mother has always hated it and moved them back putting the cushions the right way so I guess even when I did the facade well anyone who knew me should have known how ill I was but there’s that horrid behavioural dissonance. And I never knew that people didn’t get it maybe because even tho I said I get ill and had to rest outside work I’ve never realised some might never have had this permanent need I have even when they’ve had whatever their worst illness was. But I guess I realise now that no one else’s house does have their sofas ‘arranged like a bed’ and they did manage to sit at a desk ti study at uni.

but my better points I was able to dance (even though that almost certainly gave me huge payback I just hadn’t worked out PEM) and if I was on my feet doing a job or shopping I was moving. So sitting and standing were bigger issues.


or was having to force my body thru school lessons I still remember now that feeling of wanting to be in a comfy chair not upright and my subject choices actually quietly being driven by a feeling I couldn’t do a job in a lab or outdoors. Sitting up and doing work was effort and the more reclined the environment the less like an army training course homework felt. I spent Sundays locked away doing homework in a room with a sofa I just laid out on.

I used to dream snd feel in body for the last hours of the non busy office days that I just wanted to be lying on my couch. Home working was as transformative for this change of position and environment as it was in reducing the energy on journey and getting ready etc. I agree with @Murph on the legs up point. There is also something about being compelled to have a certain side of head supported then change side then flag in back then front when feeling at my worst.

move sprbt my life eyeing up without realising it things like benches of seats in surgeries or unis for lying your head down. So there’s a ‘feeling tired = at least so tired you’re considering putting your head on a mucky go surgery seat’ , I’m now so ill I’ve caught myself looking at a small brick wall that way whilst waiting for a taxi home from go once, but not because showering has also been inordinately hard for the same reasons for me - dealt with when in more flexible times by ‘waiting for a good moment’

I got ME early enough I’m not sure I can speak to the post-viral as I’ve had big illnesses on top of ME

however throughout my youth I had terrible tonsilitis (perforated eardrum and Quincy stuff by the end) and was never thought of having post-viral but almost certainly had times where I’d returned to school whilst still fragile. So I can’t speak to that. I’m worse now than I think I ever was but the closest I can think of lying down wise is indeed those worst few days of those - I assumed everyone had experienced something like that. There is a difference though in the all over muscle aches w particularly aroound joints but the calves and shins on (which feels like it’s the bones - and this part of my legs actually looks ravished not just in smaller muscles and got worse each time I did more like car parks moving furthe away). A 45min pressing of accelerator in car would leave my calves inflamed beyond what even the busiest sports and training days could ever achieve it clearly was illness-created.

 

In semantic terms it is, but it is not what most people call OI, which is regarded as an immediate need, often assumed to be related to brain perfusion.

 

Broadly agree from my experience of Long Covid: first few months featured significant fatigue and generally feeling dreadful and fuzzy in the brain, but the OI/PEM stuff (including the urgent need to lie flat at times) didn't develop until months 3-5 ish. I generally prefer resting sitting in a supportive chair because I can breathe more easily like that, but nonetheless the urge to lie flat often takes over.

I never had any previous post-viral fatigue or anything ME-like, before Covid. But a decade ago I did spend a lot of time lying flat because of a musculoskeletal spinal problem - that was the least painful position. During this time I was physically very tired because of the pain and the effort of intensive physio, but not mentally tired (I could quite happily work while lying flat with a laptop propped up over me) and never any OI/PEM. I would have thought that if I had any predisposition to OI/dysautonomia, it would have shown up at that stage.

 

That was coming up on my radar.

 

Prior to ME onset the only times I was impelled to lie down by illness were with a couple of episodes of flu and, to a certain but lesser extent, with migraines. I've had migraines since childhood (still get them, though not as frequently as I used to back then). While preferring to lie down is common with migraine too, it's not quite the same as with ME; there are subtle differences, at least in my experience of the two conditions. With migraines pre-ME the most important things I wanted to do were to get rapid pain relief, avoid light & sound and to be still, because movement exacerbates the migraine (not just the pain, but nausea & other symptoms too). With migraine simply turning your head can make the pain briefly worse, and migrainous vertigo is fairly common which gives you another reason to remain still. I certainly did go to bed with migraines but there are subtle differences with bouts of flu & with ME & I always felt the impetus with migraine was more to avoid exacerbating movements and to prefer stillness than a need to remain recumbent in the sense that occurs with severe flu.

Agree that prolonged PVFS may be mistaken for ME, especially with glandular fever where it has a tendency to persist. This is one of the reasons I didn't like the NICE guideline changing the criterion from 6 months to 3 months; I figured we'd get more misdiagnoses and more spurious recovery stories.

 

I have found my need to be flat has increased over time although from a child, I did my homework while lying flat on the floor. I read in the library curled up with my feet under me.

I have just bought a reclining chair with a foot section which raises and a back that reclines although it is mostly at about 50/60% in which I spend all the day when I am not in bed or occasionally out on a wheelchair walk. I cannot stay standing up and I can suddenly need to sit. For example greeting or saying goodbye to someone at the front door often ends with me sitting quickly on the bottom stairs. I have yesterday noticed that I am tending to raise the foot section of my chair so that my feet are level with or higher than my heart, whereas initially they were lower. I feel better like this.

With reference to bathing discussed in another thread, I am having to replace my bath with an easy access bath with a door despite its disadvantages. I can't shower because I must lie down.

My M.E. followed PVFS following EBV at age 39. There was a long gap before ME was diagnosed. I worked during this time in a .8 job which took all my energy which at the time I attributed to poor stamina.

 

Which is a worthwhile achievement and considering timescales, since the discovery of penicillin was less than a century ago, we have made astonishingly rapid progress.

ME is the next challenge. I have no doubt you must be right that we will find detectable differences between PVFS and ME/CFS.

This field stagnated for decades but covid, long covid and post covid ME have raised the profile of the quest and made the connection in the public consciousness / media zeitgeist. I have no doubt people are taking it seriously now.

We are still waiting for DecodeME. For symptomology with a view to creating a diagnostic key, I think that is more likely to happen retrospectively, once we have cracked the molecular mystery because self reported accounts are so fuzzy and we are not geared up to do it that way.

A good clinical team could make a generation's work of taking detailed patient symptom accounts and trying to find patterns. Maybe its the sort of thing they could do somewhere like the Charité Berlin university hospital which sees a lot of CFS patients of all stripes or maybe in the UK at a university research hospital with an ME service. We need a centre of excellence in the UK. So far they are like a collection of little green shoots but no majestic blossoms with real expertise because the field has a stigma among the chattering medics, as evinced by Sarah Tyson.

If we really wanted to get things going, recruit the whole world, develope a highly detailed standardised symptom report to deploy in any hospital which will join in and couple that with samples to a biobank. Then build an AI to spot the ball.

Developing such a questionnaire ought to take years but I think people are more willing to fund that kind of thing now. What about the WHO? Can they do that kind of thing?

Its going to be complicated by the possibility of subtypes of ME/CFS maybe also PVFS. Its a big job but I reckon its more hopeful now than ever before.

 

It does sound as if there's a severity thing going on, doesn't it?

I've asked the two people I know personally with ME/CFS, and neither of them frequently lie down during the day. It sounds as if one of us does it a bit more than the others, but she's the only one that gets migrainous headache as a symptom.

If you exclude worsening triggered by additional illness/accident/surgery that later improved, none of us have had severe ME.

 

I'm too unwell to read the thread, so apologies if I am repeeting or thread has moved on. But was drawn to this thread because

yes yes a thousand times yes.

A desperate desperate need to lie flat, to point of actually just lying down on the floor, even outside, just cannot even sit up in a comfy chair. Even when mild & i didnt even realise it was ME, i just thought it was 'yet another virus' with all the symptoms except the cough/sinus symptoms hitting me, and the remarkable need to lie flat.
I noticed it as unusual even then. Having to put the cra over to recline flat for an hour or so before continuing. Arguing with nurses who kept raising head of bed while in hospital for gynae procedures, just this weird experience of having every cell in my body, just everying in me screaming to get flat, and the overwhelming relief of doing so. But noo drowsniness at all, not lying flat to sleep.

And now, the inability to sit, having to have legs up, reclined, esp with head/neck supported. A crash is a wave of the original virus symptoms plus confusion/cognitive issues plus sensory processing issues/'sensitivity', and overwhelming need to be flat. Even if i am sat up in comfy chair, supported in evey way, i simply MUST lie flat, better on hard floor that is agony to lie on, than sitting even in a recliner.

I dont have POTS, but i do have seeing stars & everything going black for few seconds when i stand during PEM or after i reach my limti of bening upright

So yes the 'flat' thing, is definitely a 'thing' for me, has been commented on by carer who prevousy worked with someone with MS advanced. Everyone involved in my support knows that soon as I show signs of stuggle/"tiring", i need to get flat, and fast if it not going to develop into full scale crash.

sorry that maybe muddled but dont know when i be bale to & the flat thing is so big in my life even since mild that wnated to respond soon as saw thread, that Yes Jonthano, i thnik you right FLAT is a thing. I couldnt type this if was not competey flat, cant think if sit up.

 

Severity and variety seem to explain most of this to me. When people have various viruses, COVID or the flu, there's a huge range of symptoms and degrees of impairment. Between people, and sometimes for the same people. I have seen so many accounts of LC saying they had COVID 2-3x before and it wasn't much, but the nth time wrecked them. Even with acute illnesses, some have just the sniffles, some are laid flat for weeks and will be so out of it they will barely remember whole days. Illnesses that can and have killed millions of people.

We don't know exactly why that is. There is no reason why that shouldn't apply here, or why PVFS and ME/CFS should have any distinction beyond the historical desire to separate them, mostly based on extremely incomplete data, or maybe some inflection point. Acute illnesses can have wildly different courses, so it makes sense that so should chronic illnesses. At least some. Certainly one that begins with an acute infection, and in many cases is a direct continuation of it.

Most of what's happening here is invisible, we just don't have the technology or the knowledge to see it all. We have the equivalent of grainy low resolution screenshots where only high fps HD video would make it possible to know for sure.

I didn't really experience the extreme exhaustion of ME until many years. I had many other symptoms, including PEM and OI, brain fog and so on. At first it caused a lot of confusion in LC communities, people saying that this isn't fatigue, they don't even have any. Until they do. But even then, calling it fatigue is wrong because it has nothing to do with the common definition.

I think there would be a lot more clarity here if there was a full reset. If all the past knowledge were erased, including from people's memory, and including the dreadful psychosomatic ideology. If people simply started from scratch without the mistakes of the past. But we don't have that luxury.

 

Making it immediate seems a bit flawed, too binary. So many of us struggle to do anything standing up, at all or for more than a few minutes, often can't have conversations this way and need to sit down for it. It's not an immediate "I have to lie down flat or I will faint" but it seems to fit a less severe definition of OI to me. Maybe not a typical one, or a medically accepted one, but then it would need a different label where a difference in severity does just as well.

For years I used to be unable to have any conversation standing up and had to sit down, even simply to process what was just told to me, but have improved in recent years and can manage it. For a few minutes. And nothing too complicated, but that's also true to a degree with anything, because brain fog.

Sometimes it is bad enough to have no choice but to lie down. And for sure pushing through it and exerting beyond capacity will force that need, but most pwME adapt because avoiding fainting is something people will do naturally without advice from anyone, and will usually manage it unless it's too sudden to react to it. Which still leaves all that space in-between, where most people seem to be. Where there is no 'need' to lie down, but everything is harder the more upright we are.

 

Needing to lie flat during the first 5.5 of PVFS was mostly an equilibrium/tired issue. That feeing resolved once I started to feel 'recovered'. I had no issues being upright for long periods of time after that.

Second round. Needing to lie flat started from reactivation of EBV and HHV6 22 years ago that gradually worsened. I get chest and forehead pressure and need to lie down for at least 30 minutes and then I'm ok. It isn't the same need to 'recover' as I felt during PVFS.

 

Medicine recognizes three types of orthostatic intolerance: vasovagal syncope, orthostatic hypotension, and postural orthostatic tachycardia syndrome. The orthostatic hypotension can be immediate upon standing up, or delayed. The POTS can have variable delay. These have been recognized because the symptoms are acute, arise without long delay, the association between being upright and symptoms is clear, and they can either be observed from the outside or measured objectively.

What I have is type 4 orthostatic intolerance which is more subtle. This type of OI hasn't been characterized and recognized as a fourth type of OI yet. I would describe it as being upright being stressful for the body in an insidious way, with gradual build up of symptoms. An experienced outside observer can notice it but it is generally not obvious. The body can endure being upright for a while, but ends up so stressed that it needs hours or good sleep to recover. The nervous system seems to end up in an overexcited, stressed state that will also interfere with sleep, leading to unrefreshing sleep!

It seems that there is a widespread problem of doctors and patients clinically some form of orthostatic intolerance that does not fit with the three recognized types but applying an OH or POTS label anyway because that is the next best thing.

What is also not yet recognized is that sitting will cause the gradual buildup of orthostatic stress. It will happen more slowly compared to being upright.

I can distinguish between having to lie down due to OI, and having to lie down due to exhaustion from exertion. When it is due to OI, I'm less likely to fall asleep, and more likely to be bored, restless and nervous, and wanting to keep my mind occupied.

 

Once the initial virus was cleared, did you get the immune-type symptoms if you overdid it? Hard swollen neck glands, sore throat, runny nose, faulty temperature regulation, low grade headache?

There's probably a distinction between that and the common post-viral thing of feeling as if you could do a bit of hoovering when you're sitting down, but getting lightheaded, sweaty and nauseous as soon as you try.

For me, OI is a constant factor, but acute environmental intolerance is a feature of PEM.

Other times, I can watch the cricket, tolerate the 1400rpm spin cycle, and put up with a bit of neighbourly DIY. It tires me much more quickly than other folk, but I can even enjoy loud acoustic music for a while. In deep PEM it would be enough to make me throw up.

Obviously some pwME never get out of PEM, so they have to live with this the whole time.

 

I've mentioned this several times before, the mornings and evenings are vastly different in my case, I don't feel the need to lie down in the evenings to 'recover' unless I've really overdone myself. Morning and afternoons are the worse.

@Jonathan Edwards do pwRA or other autoimmune illnesses feel worse earlier in the day?