Needing to lie flat

I don't get much muscle pain, but otherwise I am similar to you - very rarely need to lie down. I don't think I have orthostatic intolerance.

My legs get tired below the knees. I also have difficulty standing still - have to keep moving my weight from one leg to the other, so queues are a problem!

I spend most of the day sitting on a chair or settee. But I can do a small amount of walking or e.g. gardening.

 

For me, bad days feel quite flu-like. I don't have any physical need to lie flat, and position of legs, etc, doesn't make a significant difference. I just feel lousy, and can't sit and read, so it just feels better to lie on my bed. My journal has frequent entries of "Bleh, bed", which encompasses a set of symptoms and severities I'm all too familiar with. FWIW, these episodes typically also involve elevated body temperature.

 

But what is the 'severity' we talk of consists of having the symptoms that go with having to lie flat? It becomes a bit circular. You say that you are significantly disabled but do not feel need to lie flat. Maybe your disease is indeed an outlier - ME/CFS7 perhaps.

 

Yes, that's true.

I get the same urgency @JemPD describes when sitting up, except for me it only happens when standing. For her it can only be relieved by lying down, for me sitting down will do it. Before I got the wheelie I'd black out if I tried to stand in a queue, so I had to sit on the floor or pavement.

That's why it feels like a sliding scale of severity, but I see what you mean. Obviously I've also had the urgent need to lie down, but only when there's something on top of ME/CFS—a flu bug, or when I've needed steroids for asthma or labyrinthitis.


ETA: the same applies to acute sensory intolerance. For me it needs to be severe PEM, for others it's a daily occurrence, maybe because they're rarely not in severe PEM.

 

Twenty years ago, before talk of PEM and cerebral perfusion I was teaching comp sci classes

I'd have a pot of coffee, ride my bike to school and have another large cup of coffee before classes. At lunch I'd have another large coffee and lie down on the floor of my office for an hour.

After classes I'd cycle home and suntan on the deck for an hour. I'd be completely flat and fall asleep for an hour. I'd have another pot of coffee in the early evening to try to get things done. I never had trouble falling asleep.

These days I can have a 5 minute shower and have the strong urge to lie down. I can have days where I lie down almost the entire day, getting up every couple of hours only to discover that I really do need to go lie down again.

The one thing I've learned over the years is to lie down until I don't have to lie down any more, whether that be hours or days. It takes a lot of patience, particularly without tv, radio, reading, etc. Just lie down in a quiet space

That said, I got for a brisk walk for 45 minutes every day. I walk to the store and get groceries. An kind of low intensity exercise that "keeps the blood moving" not a problem. I feel better moving, though a second walk later in the day is more challenging.

Two hours of any activity (driving, going for dinner, sitting and playing cards) is my current limit before I have to go lie down.

Lying completely flat always helps. I also believe, even with the nasty effects of PEM, that moving the body also contributes to a healthy body. I do push the limits but also try for balance.

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I've always had a great need to lie down all the years of my ME. For me it is like a medication I do not want to take but have no choice because it is absolutely necessary to lie down flat.

I am more moderate now and am able to sit for longer and go out at least once a day. I don't experience the severity of symptoms I once had but I still need to lie down flat afternoons and evenings.

 

Kitty do you have more symptoms of brain fog or other neurological type symptoms? The reason I ask is based around the NAM 2015 criteria, where #4 is one or both of OI and cognitive dysfunction, but that you're allowed to not have both. When I was more severe, I simply couldn't elevate my head, eventually I could sit and then stand. When needing to lie down I knew it was an imperative but it wasn't clear to me why (physiologically). I simply felt "terribly unwell". As long as I wasn't in utter misery my cognitive function seemed ok (subjectively obvs).

I have wondered whether the OI is a mechanism the brain has (or can) invoke to protect itself. For example if one of the underlying problems were to be endothelial dysfunction and glycocalyx damage, impairing the blood-brain barrier, it might be protective to try and reduce shear effects from fast flow by dropping cerebral blood flow/velocity. I need to read into this but I think the brain could detect this impairment at the BBB and act to limit damage or encourage repair. Perhaps some people don't generate those mechanisms or signals and so don't seem to have OI. I wonder if those nominally without OI might have less brain fog if they deliberately lay flat, but maybe the effect is insufficient to pick out the improvement.

It's still a major barrier in investigation that advanced neuroimaging requires the patient to already lie flat. We're probably missing a lot of useful information.

 

Although, you did have post-viral fatigue in a sense. My thought about the doctor's diagnosis was that they may not have teased out two components 1) post-viral fatigue and 2) in some cases ME/CFS triggered by that post-viral fatigue (not just the viral infection alone).

We all tend to forget that diagnostic names are often not mutually exclusive or have subtle relations. Rheumatic fever and chronic rheumatic heart disease are quite different things but they are caused by the same initial event. The heart disease comes from an additional event - endocardial scarring - that follows not just strep infection but an episode of rheumatic fever.

 

Exactly the same. It's somewhere between uncomfortable and downright painful when I stop moving. But of course moving my legs all the time makes the pain much worse when I reach the point where I can't avoid lying down.

My quads are far worse than my calves for both weakness and pain, so it's my lower legs that drive much of the fidgeting. Even when I'm not moving a whole foot, I'm often twitching my toes or tapping one heel to non-existent music, switching from left to right and back again. I also cross and uncross my legs all the time, because the compression eases the burning in the lower leg and the slight quad stretch eases it in the top one.

When I have to go to bed, the quad pain is sometimes so bad I have to lie on my front, no matter how much it hurts my neck. A few minutes of continuous compression relieves the burning, and if I'm lucky the intensity will have gone down a few notches when it starts up again afterwards. The only other thing that has any effect on it is a sitting-down shower with the water as hot as I can bear it. I sometimes have to get up in the night and sit on the shower chair running scalding water over my thighs. At least most of me is still dry when I want to get back into bed.

 

Before ME I never experienced any post viral anything. So ME was a great shock to me.

 

You make an important point here. Maybe my brainfog is so bad because I never got the "lie down" signal, because my BP is normal and I'm not dizzy. My CBF did drop 25% in tilt table test.
When glycocalyx and/or endothelium barriers are compromised, unwanted stuff will leak into my brain.
Post-viral was EBV + pneumonia for me in 1991.

 

I need to have my legs elevated by the evening, and sit with my back well-supported and then support my head with a hand. The more tired I am, the more horizontal I get. When I sit in a chair, I need arms or a table so I can support my torso muscles. If I am going through a bad patch, I need to rest lying flat.
I keep returning here - apart from wanting to check in and see how everyone is - because my symptoms still largely fit within the ME umbrella. Although I now know I have a type of muscular dystrophy, pain and fatigue are much more of a deal for me than for most of the other people with the same disease that I have asked. And the neurologists keep saying I am very mildly affected. But, my overall symptoms are quite disabling. I have tachycardia, exercise-intolerance, intolerance of lots of stimulation e.g. noise/light. Those things are not seen as part of the dystrophy. Interestingly, my mother has an urgent need to lie flat in the evening for about 30 minutes. She has no diagnosis of any fatiguing illness. She also feels as I do about loud noise, bright light etc. and gets episodes of tachycardia. And I think bradycardia - my heart rate when I am feeling bad might be 180 at one point and then 43 a short while later…

Is there a continuum of orthostatic intolerance with severe ME at the severe end, and people who don’t meet the criteria in the middle somewhere? It seems to me that OI is often very under-recognised as a significant disabler…

 

Sorry about the delay, I had to rest before trying to reply again. I thought maybe I should respond to this FYI. I hope by now you know I mean well. Since you don't have ME and (I hope) are recovering post covid, plus not everyone with ME diagnosis necessarily has the same condition, its understandable you might not associate inflammation with ME but I would have said, n=1, inflammation was a big part of my ME.

I am using the word inflammation to include any kind of immune reaction, such as those caused by white cells, allergy, mast cell activity etc. Maybe that is too broad a usage compared to the research applications you may be used to, but the symptoms are real whatever the terminology. I would be glad to know if there is a better term.

The NIH calls allergy inflammation, so I am using it in this sense.

For me the whole ME experience was initiated post EBV by an abnormal immune response to a herpes virus which became recurring and which is a subtype common enough to be acronymed ACAI, for atypical chronic active infection.

Firstly the classic TH2 shift pattern identified by Dr Paul Cheney and others was evident in my case when recurring virus was accompanied by sudden very severe asthmatic hayfever in relation to a grass pollen allergen. In retrospect that is classic TH2 shift symptomology, yet no doctors I saw recognised this. TH2 shift creates a predisposition towards inflammation.

In the first couple of decades I also had episodes of unexpected oedema e.g. in my eyelids of all places, lips and other more personal places, when bits of my body would swell up to many times their normal volume. I would call that inflammation. I also had a tendency to biotic infections like zits and styes which involved inflammation and are again symptomatic of TH2 shift.

Even today I have episodes of asthma and migraine as part of a cycle which I attribute to increased histamine release in my body, which some theories ascribe to mast cells becoming overactive in relation to TH2 shifting. I take DAO and limit my consumption of histamine releasers like plantain and mustard, which I was surprised to find actually did make a difference. I was under the impression that might be considered inflammation as well.

So for me with my ACAI there is an inflammatory cycle, accompanying a viral recurrence cycle as my immune system fights a virus, with partial success, apparently all TH2 shifted. The virus can change and with it the character of the cycle (as viruses seem to compete to trigger a response). This cycle and also PEM can lead to other symptoms like headaches, along with indications of neurological impact, especially early post covid, which feel like some kind of internal inflammatory response is under way which is affecting my brain as well as my autonomic system which would account for OI but also other odd autonomic symptoms like rigors and imho bowel dysfunction like IBS.

So I construe from these experiences that inflammation is a big part of my ME. Also I would observe that OI is just one of the several autonomic dysfunctions visited upon some PWME. Which autonomic systems are worst affected seems to vary with each individual.

 

Thanks, @boolybooly.

For me, as someone who spent a lifetime trying to dissect out both inflammatory and immune processes I see things as much complex and the two are not necessarily the same.

You have your own interpretation and it may be valid but for me the idea of TH2 shift is something from the 1980s that never turned out to be meaningful in humans, even if it was in mouse experiments. Rheumatoid was firmly defined as TH1, until we pointed out that all the evidence was consistent with it being antibody driven.

I am really just saying that we should start with the symptoms and pick through mechanisms carefully without using broad brush terms like inflammation, or even immune maybe. The body's regulatory mechanisms don't know which 'system' they belong to and in disease dysregulation often crosses boundaries unexpectedly. Antibodies in myasthenia cause muscle weakness but not through inflammation (although there is some complement activation locally).

 

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 ?

 

Yep, the cognitive impairment can be more disabling than the inability to walk. I had to give up work because it's almost dementia-like in compounded PEM and there's no wheelchair option to help get round it.

When you can't follow a two mile route you've been taking for 30 years, or remember how to switch on the TV or put the car in gear even after thinking about it, it's much like a profound physical crash. It's going to be years before it improves, not months, and even then it'll happen again if you push too hard.

Yes, it's an interesting thought. I guess it might be invoked unnecessarily, too?

 

I am a lie down flat type. Mostly it is because I feel bad but lying flat also sometimes moderates pain or fatigue levels. Measuring "time spent lying flat" would be a interesting stat. I suspect most of our cases are complex enough that it be difficult to say this flat lying measurement is directly related to something else, but that is just speculation on my part.