Undescribable, subtle sensation of suffering in response to exposure to the outside world and activities

[Hoopoe]

I would like to talk about a symptom that is challenging to describe, but maybe easy to recognize in a description.

The symptom is challenging to describe because it is subtle and not intense, but despite this has a substantial impact.

Spending time doing activities, or spending time upright, or spending time exposed to stimulating environments causes this undescribable sensation of suffering and brain fog. The brain fog part is often talked about. The undescribable sensation of suffering not so much. Is it because it is rare or because it is hard to describe?

As it gradually builds up upon exposure to triggers, it becomes visible in my facial expression. I struggle to describe it in terms that are more specific than suffering. There is no recognizable emotion attached to it, nor does it come from anywhere in particular (it just builds up gradually, I suspect in response to the usual suspected triggers). It is not located in any particular part of the body, which I interpret it as being generated in the brain in response to some signal that is outside or at the edge of my what I can perceive in myself. It make me uncomfortable, makes it impossible to participate in many social activities.

It's almost as if there was some problem in the body that the conscious mind cannot perceive well or at all, but the "center of suffering" in the brain could and was letting me know that something wasn't right.

Can anyone relate to what I'm talking about?

If I try to describe this to a chatbot it tells me this could be sensory processing disorder, autism, adhd, or me/cfs.

 

[Creekside]

Is this different from the "my brain has had enough of that" feeling from reading too much difficult material?

So hard to describe the indescribable. Blind men and the elephant?

 

[Kitty]

As it gradually builds up upon exposure to triggers, it becomes visible in my facial expression. I struggle to describe it in terms that are more specific than suffering.

If I'm understanding you right, I think I experience that as a type of stress.

It's a tricky word that's easily misinterpreted, but in this context I mean external stressors, my inability to tolerate them for long, and my response to that inability.

It starts as stress, but if I can't escape what's causing it, it will eventually become distress. My facial expression would be described as strained, I think.

Apologies if I've misunderstood though.

 

[ScoutB]

I think I know what you’re talking about. To me it sort of feels like some essential part of being Ill, that normally we don’t recognize as being distinct from concrete symptoms (headache, runny nose, stomach pain etc). I think the closest word to it is malaise — but of course that word has been pretty watered down. We need a word that is to malaise what like migraine is to headache maybe.

It is a hard sensation to identify and describe. I think the fact that normal acute illness is short lived, and has these concrete symptoms, makes it harder to realize this bad feeling can be distinct.

This sensation is one of the reasons why neurological-involvement in ME/CFS seems pretty likely to me (at least for my case). It often feels like my brain is just pressing some very fundamental “you are sick, doing things feels bad” button.

 

[Hoopoe]

If I'm understanding you right, I think I experience that as a type of stress.

Yes, I feel stressed, but it's not a normal kind of stress.

 

[Kitty]

Yes, I feel stressed, but it's not a normal kind of stress.

No, nor for me. It's a weird mix of illness, overload, vulnerability, struggling to think or speak coherently, all-over discomfort that's as uncomfortable as outright pain, and a rising sense I need to leave ASAP.

I can't separate how much of it is ME/CFS and how much is autism, though. I'm pretty sure autism is part of it, but ME/CFS probably makes it worse.

 

[NelliePledge]

Good summary @Kitty as usual just posting to say that describes my experience pretty well too - apart from autism aspect.