Why do we crash so quick when upright/sitting?

Currently crashing so this will be a bit short. Was 2 hrs out to meet doctors and by the end i struggled to walk and almost had a nervous breakdown (luckily i had so many panic attacks last year after worsening that i can feel incredibly terrible without freaking out about it) It got me thinking.

If its due to lack of energy/energy dysfunction, is there really that big of gap between lying and sitting/standing?

For me it feels like the nervous system shuts off kinda, and i have to concentrate really hard to put my foot in front of the other when the crash starts. E.g just warming up dinner and getting it ready saps me completely these days.

I just cant get my head around it

Im 29 years old why is my body so fucked without anything obvious showing up. Like in what body systems can you have such a gigantic dysfunction without damaging the body. Like im so surprised the body can take it for so long.

Crazy disease

I live alone so needed to get these questions off my chest somewhere
Thanks for reading

 

Just an unscientific guess on my part and a bias towards things related to OI - I think some of it has to do with blood flow to the brain. If impeded when sitting/standing, the brain has to struggle more than when one is lying down. This uses energy that PwME don't have enough of and results in crashes.



And yes. This is a crazy disease!

 

Denise,

Very reasonable assumption! I think the same as u.. And do have orthostatic hypertension.

Why is the question..

 

The recent paper by Hanson had a discussion on acyl cholines which were found to be decreased in ME/CFS and which could be related to brain and autonomic dysfunction.

 

I filled in one of the surveys here about hours of feet on the ground each day. I've tried searching for it, but can't find it now - I'm useless at searching the Forum!

I think I put in that I can do around 2 hours of feet on the ground - that includes sitting with feet on ground. As soon as I get my feet up my brain functions better again. But what I've noticed recently is that if I keep just one foot up before the brainfog hits, it seems to extend time before brainfog hits. Which I'm glad about as the configuration of the caravan furniture makes it hard to keep both feet up. Especially if we have visitors (not a problem at this time of year!) as I use up enough space for 3 or 4 people to sit.

Just seems odd to me. Perhaps even just one leg being horizontal reduces strain on the heart? Speculating wildly here!

 

Ok how stupid is this idea.. The nervous system is getting signals when upright that the cells are not having enough energy or oxygen(?) so we get different kinds of OI-mechanisms activated as a response?

 

Static ataxia is a big issue for me. I become a drunken sailor when I'm upright (sitting or standing) for over an hour.

Truncal ataxia or disequilibrium is an unrecognised cause of orthostatic intolerance in patients with myalgic encephalomyelitis.

"Most symptoms of OI have been surmised to be related to reduced cerebral blood flow with or without impaired cerebral circulatory autoregulation, and the compensatory activation of the sympathetic nervous system".

 

OI definitely contributes to my crashes because since I've started taking medication for OI I crash less.

However, going to appointments is also very exhausting because it takes a lot of brain energy to process the sensory information of being outside, the journey, being in the waiting room etc. and then a lot of brain power to hold a conversation with the doctor.

I often find that I am verging on delirium when I get to the end of an appointment or meeting, and the energy it takes to process all the sensory and verbal information leaves me physically weak. E.g. I find it hard to sit up and started slumping and falling off my chair by the end of the appointment.

I think OI affects brain processing power, making appointments etc. more exhausting. But even after my OI has been treated and my brain fog is much better, I still find it exhausting. I think our brains process information differently to normal brains, and this takes more energy. I think there is some evidence for this but I can't quote the studies off the top of my head.

So I think the combination of physical effort to leave the house, sensory and verbal processing effort, and OI can quite easily make something seemingly simple like a doctor's appointment actually very exhausting.

 

With my orthostatic intolerance, whether my feet are on the floor is a factor, but also whether my head is supported is an issue.

I can sit upright longer with my head supported than with it unsupported. I notice this as at present I am regularly taking my cat to the vet’s for treatment and sitting in the waiting room chair, I manage much better sitting in a corner where I can lean against the wall.

Lying totally flat a single thin pillow is more restful than lying on a sofa with my head supported by the arm of the sofa. When in a crash being totally horizontal is the only option until the worst is over.

I can not undertake any activity involving bending forward, eg trying to weed in the garden when standing, for more than a couple of minutes. It is slightly less problematic doing the same activity kneeling, though still restricted when compared to doing the same amount of exertion totally upright.

 

I feel the same about sitting for a long rtime.
i´ve discovered that if I take short breaks, like going for a short walk ( 2-3 MINUTES),I feel better.

 

I don't have problems sitting up unless I'm already crashed, but I really struggle with leaning forward to plant things in my raised beds. It's bizarre how much difference a relatively small change of position makes!

 

Interesting. I have a similar observation. My OI, mainly tachycardia these days, gets worse after lying down for about 45 minutes (when in PEM that applies to after sitting, too). So if I get up after 30 minutes rest there's a HR increase of maybe 40bpm but if I get up after 45 minutes rest HR jumps by at least 60bpm, sometimes by up to 100bpm (and no, that doesn't feel too good).

So I've made it a habit of getting up and walking a few steps, even just for some seconds, every 30-40 minutes. It's annoying during PEM when I really, really don't feel like getting up but even then it's worth it for the reduced OI.
Obviously getting up to move so regularly isn't possible at night, so mornings are always a bit of a workout for the poor heart.