> I’d say ability to sideplank and neck strength are probably two of the most important recovery metrics. Drs don’t understand the psycho-somatic balance of the illness. There is a psychological component but it is a minor component and is driven by physical constraints.
Can you explain/corroborate this? The rest of your post really paints a picture of it being about psychological/emotional stress (and suggests different coping techniques akin to avoidance). I was with you until "sideplank".
The physical problem is bigger than the mental problem. There is an underlying physical problem, it just isn’t understood. Because brain fog and pain are the defining symptons then emotional regulation (which is super important also ) gets overblown.
A convalescant event effectively transforms you into a really terrible athlete with shameful recovery periods.
Being physically injured like spraining an ankle is so mentally fatiguing because the brains autopilot modes get temporarily disrupted. It can’t use all its gpu bandwidth and has to switch on other processes to move about.
Proprioception is important, head stability is important, not aggravating the thoracic and cervical spine when moving is important. The stronger you are the more you can achieve without getting to the point of exertion.
There is alot of emotional management necessary for sure - your brain used to work and now it doesn’t. And it hurts to move.
There is also a lot of biochemical management needed to minimise inflammation.
But without a certain level of physical strength then emotional and biochemical management alone won’t allow you to recover.
And it takes grit (which is hard in the face of hopelessness) to get that physical strength back plus a smart diet and supplementation combined with effective emotional management.
If I didn’t have follinic acid in my recovery steps I probably wouldn’t have recovered. If someone hadn’t gifted me a decent bed I probably wouldn’t have recovered. The bed was to support the thoracic spine so I could sleep.
There is a definite physical component to recovery from cfs and this is poorly researched.
> Being physically injured like spraining an ankle is so mentally fatiguing because the brains autopilot modes get temporarily disrupted. It can’t use all its gpu bandwidth and has to switch on other processes to move about.
Ohhhh... this explains so much about why what are otherwise mild injuries can absolutely throw off my rhythm and disrupt my productivity. Having even a low-grade injury ties up cycles and is like a background task set to prevent going into power-save mode, because it's like a constant potential threat/alert.
When your CNS is at 0%, it's weirdly difficult to hold your spine and head straight against gravity. You start leaning on stuff, resting your head on your hand, etc.
Totally, interestingly they diagnose the illness with a tilt table in some countries.
I had an inversion table atempting to relieve my thoracic pain at the time of my diagnosis. Which was a diagnosis of exclusion. I was gutted by the chronic diagnosis.
I was lucky that the inversion table allowed me to accept that I had the condition post diagnosis because it definitely triggered fatigue after I’d rest at the tilt angles that trigger fatigue.
The awareness of the tilt test and that delayed fatigue onset were the 2 useful pieces of information I got from the cfs support group I attended 3 times. I accepted my diagnosis quickly as I’d accidentally been doing my own tilt table tests with the inversion table. I also quickly realised that regularly whinging about the condition in a support group of people who accepted that they weren’t going to recover from something that seemed treatable wouldn’t help me.
Can you explain/corroborate this? The rest of your post really paints a picture of it being about psychological/emotional stress (and suggests different coping techniques akin to avoidance). I was with you until "sideplank".