Orthostatic intolerance

The point I have been trying to make is that 'Orthostatic Intolerance' simply means the symptom of not being able to tolerate staying standing up. Sasha was aware she had OI. If asked in a questionnaire 'do you find it difficult to tolerate staying standing up?' the answer would have been yes. People may not know that not being about to tolerate standing up is called OI but then a lot of people do not know that a black headed gull is called larus ridibundus. It makes no difference - they know it is a gull.

So 'OI' is like 'pain in the arm'. It is not an explanation of anything.

I am not suggesting that Dr Bateman is wrong but that her presentation is confusing - I think lots of the posts above indicate how confusing it is because they assume OI means more than it does.

I also think it is confusing to link brain fog and nausea to OI as if OI explained these. Brain fog and nausea are just other ways of describing symptoms. All these things may go together but if they do that is because of some cause, that we might call ME gives rise to them.

The reason I think this is important is that so many PWME seem to go away with the idea that we have explanations for symptoms, maybe relating to the autonomic nervous system. I am not at all sure that we have anything worked out. To me accounts of what the illness is actually like, like John Peters's interview or all the many comments on here are much more helpful scientifically than a lot of the stuff that gets presented a meetings supposedly making sense of it all.

It may not matter if people go away with confused ideas about explanations of their illness but I worry particularly that these confused explanations feed in to doctors thinking that people have unhelpful beliefs. And when that starts to get dangerous is when parents are thought to have unhelpful beliefs about their children's illnesses and children get taken into care because of it.

 

You have OI. You have told us so!

 

I knew I had difficulty standing up but I also had difficulty doing anything that involved expending energy. So someone would have had to have given me a questionnaire in order to reveal the problem as one of OI but it never occurred to me to ask for one or to report the symptom to my GP, just on the basis of my difficulty standing.

It was only when I read about the behaviours that go with OI - always trying to sit with your feet up, sitting with your legs crossed, finding it easier to stand while shuffling about than while being completely still - that I recognised the issue and asked for testing. My OI doesn't cause me to be lightheaded until after several hours, and I lie down long before that, so the key symptom that doctors always ask about isn't noticeable in me.

I may be missing your point here, but I didn't realise that being upright was a trigger for the symptom.

 

Orthostatic means 'being upright' or literally straight standing.

But this is a mix of things assumed to relate to haemodynamic causes of OI, not OI per se. And I think they may be muddled. If you have OI due to a fall in blood pressure when standing sitting with the feet up may be the worst thing to do because it will exaggerate the difference with standing. If the problem is gravitation of water to the leg tissues, as in right heart failure, then again sitting with feet up will only exaggerate the problem because there will be more room for the feet to accommodate fluid on standing.

I have never heard of legs being crossed being relevant to any of this !

Finding it easier to stand while shuffling applies to everyone. I learnt that on interminable ward rounds as a student. If you do not shuffle your legs about you are likely to faint - lots of students did.

The point remains - OI is not a description of an abnormal process, just not being able to tolerate standing straight up. That is the only thing it means, not a whole lot of other symptoms that might go with that.

 

I suspect that many people with OI don't think they have a problem with standing upright. They think they have fatigue or social anxiety or get tired quickly or something along those lines. They don't make the connection between the symptoms that gradually arise and wax and wane when they spend time upright. Usually being upright means doing certain activities like going out with friends and socialising, buying groceries, sitting at a desk for prolonged periods and so on. The patients won't say they can't tolerate being upright, they will say that these activities are problematic. If they have more severe OI then it quickly becomed obvious because they're going to get fairly symptomatic in minutes but the suspicion is that the milder cases are almost never diagnosed.

 

I know, but according to the literature it also incorporates difficulty not just being standing, but being anything other than flat. That's what makes it hard to realise you have it. I have not only difficulty standing, but also difficulty walking, and difficulty sitting with my feet on the floor, and sitting with my feet up, and sitting up in bed. If I'm doing any of those things, I eventually have to lie flat.

And yet if you can't tolerate sitting with your feet on the floor for long periods, then sitting with your feet up is all that's left. It's either that, or lie flat.

I saw it on a list of OI indicators somewhere and realised that I was doing it without having realised why. If you google on "orthostatic intolerance leg crossing" you can find a literature, such as this paper:

https://www.ncbi.nlm.nih.gov/pubmed/2035896

But I think that you young students would have been able to stand at a bus stop for more than a minute or two without starting to feel bad and needing to shuffle and clench your muscles and so on as a counter-measure.

I realise I'm not addressing this point and might be leading things off-topic!

 

Part of the problem is that doctors seem to be unaware that it is a prominent, very disabling symptom.

 

You still seem to be assuming that 'OI' means a cause of symptoms. It doesn't, it is just a name for the symptom.

 

I don't understand that. Orthostatic intolerance actually means inability to tolerate standing. It makes sense that this might be associated with difficulty doing anything more than lying down, so it is reasonable to bundle problems with not lying down under this heading. But I cannot see how that makes it difficult to be aware that you have a problem standing?

And even if problems standing go with problems sitting that tells us nothing about the cause. It might be haemodynamic or it might be something else, as in vestibular disease, which produces orthostatic intolerance too.

I strongly suspect that pretty much all the literature on OI in the context of conditions like ME is half-baked. In the days when I rubbed shoulders with the people who wrote this stuff it certainly was. A lot of doctors are not that good at physiology. The ones I have known specialising in these sorts of problem tend to be even less good.

 

Because it's not clear that it's being vertical that's the problem. For decades I thought it was a problem with simply getting tired quickly, because maintaining a vertical posture involves using more energy than lying flat because you have to engage your muscles. I also get tired if I'm lying down but using my muscles (for example, trying to keep my head at the right angle to read a book).

So my problem seemed to be rapid fatiguability in any posture, while exerting myself in any way at all, even if that was simply working hard enough to remain upright in an armchair.

 

@Jonathan Edwards - I'd add that the ME charities did (and still do) emphasise POTS and always talk about dizzyness on standing in connection with it. Without dizzyness, a lot of patients will think, as I did, that they don't have POTS and therefore don't have OI either. It takes some studying to realise that there are other versions of OI and that you might not experience dizzyness (unless you really push things, but most of us will have lain down before dizzyness would arise).

 

Well in that case you did not particularly have OI, you just had fatiguability in any posture. That cannot be explained by something called OI, which means specifically problems with posture by definition.

It sounds as if you were subsequently told that there was a haemodynamic cause fryer symptoms, that amongst other things made them worse when upright. But it is not clear that anybody knows what that cause is or whether any particular advice is appropriate.

 

But POTS is not a version of OI. POTS is a syndrome proposed to be based on a putative haemodynamic disturbance that may be one of the CAUSES of OI.

The central problem is that time and time again doctors use words to describe both the cause of symptoms and signs and the symptoms and signs themselves. So arguments about causation go round in circles. It is pervasive throughout clinical medicine.

 

I do have fatiguability in any posture, but I also have OI, as demonstrated by a positive tilt test, and have been prescribed various interventions for it by both my GP and a cardiologist. I also had shown the behaviours that point to OI, such as sitting with my feet up and crossing my legs and shuffling about in supermarket queues and at the bus stop.

Now that I know what specific OI symptoms to look out for, it seems very clear to me that I have it. But I had to learn about those symptoms in order to make a tentative diagnosis for myself and then try to get a formal one from the NHS.

My point is that you said earlier that if any of us had OI, we'd know it. But my lived experience is that I had OI for decades and mistook it for part of my ME-related general fatiguability.

 

Fair enough, but loads of authoritative people say that POTS is a kind of OI, such as the Cleveland Clinic and Peter Rowe, who says:

The medical term “orthostatic” is defined as relating to, or caused by, an upright or standing posture. Orthostatic intolerance, then, is an umbrella term for several conditions in which symptoms are made worse by upright posture and improve with recumbency. This document provides further information about neurally mediated hypotension (NMH) and postural tachycardia syndrome (POTS), two common forms of chronic orthostatic intolerance. ​

So regardless of the correct way to define it, what patients read in the ME literature about POTS and OI isn't necessarily very helpful in helping them to recognise that they have OI.

 

You are still not getting the point Sasha. A tilt test does not demonstrate OI. It suggests a particular haemodynamic cause for OI if it is present. One of the problems of the tilt test is that it can be positive in people with no symptoms - i.e. no OI - so it has to be interpreted with caution.

OI is not the name of a cause of a problem, although I do not doubt that this may be how it was put to you by my colleagues. They were trying to identify a cause for the OI that you may or may not have had symptomatically. The problem in ME is that it is very unclear whether or not what the tilt table test shows is telling us something useful about the cause of symptoms. Having ME may lead to a positive tilt table test but that may have nothing to do with the symptoms of ME - which maybe cause the tilt table findings rather than the other way around.

 

Yes, well, maybe I had better not say more. I have already said something about colleagues' understanding of physiology.

 

I may well have lost the plot here but my starting point was that you said that if PWME had OI, we'd know. My point is that my symptoms and behaviours clearly point to OI (regardless of the tilt test) and yet I didn't know I had it because unless you know the symptoms of OI, they're hard to distinguish from the ME symptom of easy fatiguability.

 

Absolutely, because all they need to know is that they feel bad with standing. My reading of the research is that it is not yet at a stage where patients can be told anything very useful. That they have been told all sorts of things for years is just a reflection of the doctors' habit of bullshitting.

 

I think you're missing my point now! Our fatiguability means we feel bad doing anything. I think it takes extra indications to show that we specifically have a problem with standing. If our only problem with standing is due to our general fatiguability it's surely not clinically interesting and doesn't merit a special term. Otherwise, I think we'd also have whatever is Latin for "sitting-up-in-a-chair" intolerance.