Is orthostatic intolerance a normal (and underdiscussed) acute infection response?

I have lifelong OI that worsened with Long Covid. I remember similar more intense OI events previously when fighting colds and flu. I found it very hard to stand and prep meals, would need to lie down more. Current symptoms feel fairly similar to those experienced during acute illness. GP friend mentioned it was not unusual to have temporary OI issues when fighting viruses so I assumed it was a known association.
 
jnmaciuch said:
Just an idle thought I had from thinking about CNS-mediated symptoms of infection. The symptoms that seem to get the most discussion are general malaise, fatigue, chills, fever, heart rate, and cognitive impairment. It made me wonder: do people normally also experience orthostatic intolerance during an infection and just not register it as a specific symptom?

Thinking back to the worst infections I’ve had, I do remember a preference for lying in my bed. Once I got to the point where I could migrate to the couch and watch some TV, that tended to be a sign I was on the way to recovery. I also distinctly remember feeling a cold coming on while I was stuck at school and needing to put my head on the desk or find a corner to lie down during break times. My sense is that if it was just fatigue, closing one’s eyes while being supported upright would have similar relief as lying down. And yet the thing that tended to define the worst phase of being sick was collapsing into a pile of misery.

I’ve done searches in the literature and it seems like no one is really discussing “orthostatic intolerance” as a specific feature of infection response. So the question I’m throwing out is whether this is because it’s an under-recognized feature, or if it’s just not a feature at all.

Folks who experience orthostatic intolerance: is there any similarity to how you might’ve felt during the worst flu of your life pre-ME/CFS? Do you notice that family members who come down sick start resembling your OI symptom patterns? For the medical professionals who have treated lots of infected patients: do you see patterns that might be reasonably described as OI?

I think this question is relevant because it could tell us whether this prevalent symptom of ME/CFS can already be explained by the pathways involved in infection response, or if any theory of ME/CFS has to reach beyond that to explain OI.
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My mum gets it when it’s a bad enough illness and she isn’t me/cfs - the kid thinking doing ok then having to lie down before faint. I don’t know either my other family members I’d have to ask

But is it OI or vertigo and exhaustion (but then that’s what it’s like with me/cfs too ‘need to lie down’ rather than ‘just’ specific oi often there’s other stuff too)

It’s hard to know if it’s the case across everyone because if they don’t you never know if that’s just a ‘yet’ if they’ve been lucky people to eg avoid real flu or anything serious (I didn’t realise some are - tinsilitis was common in my family so)
 
hotblack said:
To me it’s not just say an elevated heart-rate but more it’s that my body responds really really badly to an elevated heart-rate now compared to how it did before ME/CFS.
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For me it's not even necessarily HR-related. My HR increases for 10-15 bpm upon sitting in the bed, less if I go from horizontal to reclined. Neither qualifies for tachycardia. Yet it becomes very unpleasant in the upper part of my body very quickly and it takes hours to resolve if I get back horizontal immediately. If I keep pushing through, then I pay with PEM, too.


My OI started with a virus which triggered ME/CFS. I realised I had a problem as soon as I tried to get out of the bed after the infection. I couldn't stand by the kitchen counter to prepare food for more than a few minutes (which wasn't enough to fry eggs) and I couldn't sit in a chair with my feet on the floor for the duration of a meal, any meal. I've never seen a family member putting their legs on the chair in the kitchen-diner. Off the top of my head, my family members had flu, chickenpox, UTI and Legionnaires' disease when I lived with them. I would have to think about other infections.
 
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A viral infection forces me to lie down under the duvet because I’m shivering, I feel weak and I feel as though I’m about to fall asleep, and it is not unpleasant. Then comes a fever and, eventually, a distortion of consciousness, where I’m half asleep. I also break out in a sweat.

An episode very similar to ME/CFS was an infection in my upper jawbone following an operation to fit an implant (bacterial, therefore). I didn’t feel weak. I had nausea, a feeling of being in a vice and a general sense of unease. There was no fever or abscess; it was exactly like a PEM and I couldn’t stand up because I was paralysed. I don’t recall having tachycardia, but I wasn’t paying attention to it. It felt as though my metabolism was shutting down.

I suffered from hypotension for over five years when my ME progressed from mild to moderate in 2013, with an average reading of 9/6, so I felt light-headed most of the time. But I think I do suffer of IO, since my blood pressure has normalised and I still have to lie down very often to shut down a sense of oppression.
 
Ah, one detail that may not be such a small detail after all... Now that I’ve been asked this question, I’ve thought about it, and there are some strange things.

Ever since I was a child, I’ve taken my showers sitting down in the shower, almost as if it were some kind of reflex my body had. Even when I was perfectly fit, my body seemed to want me to do that.

Likewise, in the years before my ME/CFS, when I was sitting at my desk I would often sit cross-legged, and I did the same during meals. I even felt the need to stretch my legs out on the desk because I felt more comfortable that way...
Maybe these were clues. Some kind of unconscious signal from the body. I don’t know.

Whenever I was ill, I would immediately take to my bed. I remember the COVID infection that happened during the prodromal phase of my ME/CFS (bad luck) after the alcohol and tramadol combination. I spent six days in bed, with a 41°C fever for two days. I’ve always tended to run very high fevers.

I was also getting repeated stomach bugs (one or two a year) during the two years before my ME/CFS. (A bit off topic, sorry.)
 
jnmaciuch said:
I’ve done searches in the literature and it seems like no one is really discussing “orthostatic intolerance” as a specific feature of infection response. So the question I’m throwing out is whether this is because it’s an under-recognized feature, or if it’s just not a feature at all.
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I think feeling dizzy is recognised as a common experience during infections. And needing to lie down is recognised as a common experience during worse infections. Outside of this forum, "orthostatic intolerance" refers only to chronic problems like postural hypotension, postural tachycardia, cerebral hypoperfusion on standing, not to the common phenomenon of feeling dizzy or like you need to lie down when you have an infection. So I think it's more that it's so well-recognised that it doesn't get mentioned.

Evergreen said:
Just a note before I begin: my account is that of someone with ME/CFS with a pre-morbid tendency to OI. For as long as I can remember, ie long before ME/CFS, I had some degree of orthostatic intolerance. It manifested as inability to stand on trains in the morning, feeling rotten in baths and other hot watery things people seem to love, feeling crap when playing sports that involved lots of standing around and picking things up from the ground, things like that. It did not interfere with life. I did not faint. I knew I needed to sit down and I did. I was very fit, loads of lower body exercise, drank water, looked after myself. It was just how my body worked. I did not know what it was until ME/CFS amplified it to a disabling degree.
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Looking back, I can see that I adapted to it by doing things like sitting down, twisting my legs around each other twice when sitting or sitting cross-legged, drinking loads of water.


jnmaciuch said:
Folks who experience orthostatic intolerance: is there any similarity to how you might’ve felt during the worst flu of your life pre-ME/CFS?
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Feeling dizzy during infections/having pre-syncopal episodes during infections was common for me. But I think it's common generally. Needing to lie down or at least sit down during infections, even when there's no dizziness, is more common again.

The orthostatic intolerance I have now, which is delayed orthostatic/postural hypotension/neurally mediated hypotension/ (and a bit of classic postural hypotension but that doesn't cause problems) feels the same as the orthostatic intolerance I had before. It is just much more severe and doesn't go away. The orthostatic intolerance that came with the infection that triggered my ME/CFS was orders of magnitude more severe than any I had experienced before. But the nature of it was the same.

To me, ME/CFS feels like the day you think you're able to get up and do stuff after an infection, but then when you do get up and do stuff, you find that you're really not able for it yet and you have to lie back down again. And you just never reach the next day, when the ceiling miraculously lifts and you can do things again. Instead, occasionally the floor drops out from under you.

jnmaciuch said:
Do you notice that family members who come down sick start resembling your OI symptom patterns?
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Yes, definitely, including the unrelated ones.

jnmaciuch said:
I think this question is relevant because it could tell us whether this prevalent symptom of ME/CFS can already be explained by the pathways involved in infection response, or if any theory of ME/CFS has to reach beyond that to explain OI.
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I think that it's all part of whatever response/loop that we're stuck in.
 
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Evergreen said:
To me, ME/CFS feels like the day you think you're able to get up and do stuff after an infection, but then when you do get up and do stuff, you find that you're really not able for it yet and you have to lie back down again. And you just never reach the next day, when the ceiling miraculously lifts and you can do things again. Instead, occasionally the floor drops out from under you.
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Wow this is such a good analogy.
 
jnmaciuch said:
is it out of proportion (and ME/CFS level OI is only matched by the sickest of the sick), or does it actually have different features that don’t tend to occur with any infection? I’m not sure if there’s a good way to answer that if someone hasn’t experienced both
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The most serious illness I've ever had was measles, but I was only seven at the time and can't remember much more than the frightening hallucinations and screaming head pain. The rest have been common infections, but even when I was really unwell I don't remember an urgency to sit down that almost verged on panic.

The OI of ME/CFS was one of the reasons I had to start using a powerchair. I couldn't even stand for long enough to buy my own road tax discs; the postmaster needed to check several documents then write out the disc, a transaction that took three or four minutes. WAY too long.

Another difference is that with viral infections, I'd only have been driven to lie or sit down because I felt really ill. With ME/CFS, I had much worse OI but was well enough to do a full-time job running projects. I was knackered and brain fogged, sure, but I didn't feel ill all the time.
 
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