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.

 

[Creekside]

It may differ from your "facial expression", but I do notice that at times, when my ME is worse, I am "slack-jawed" or "clench-jawed". I ascribe it to some neural effects, but that's really just a wild guess.

 

[Yann04]

I definitely experience this as a sort of slowly growing overwhelm.

It starts as stressful, becomes overwhelming, by then I will have stopped any activity but sensory stimulus I can’t control will often push the overwhelming to straight up distressing. A feeling in my chest that it’s too much. An entire bodywide feeling thats likely generated in my brain that goes something like “stop this now”, it’s like physical cringe mixed with distressing overwhelm and malaise/pain. My warning symptoms flaring almost like alarms. I begin overheating. Etc.

For me because of my severity I 99% notice it from sensory input but I believe cognitive exertion can contribute as well and that was the main contributor when I was mild.

Often face will look “concerned” or “stressed” and I will be clenching my jaw. I do not control this in this case it just happens.

I find that how much, how often, and how strong this happens correlates pretty well with if I’ll get PEM.

 

[DHagen]

It starts as stressful, becomes overwhelming, by then I will have stopped any activity but sensory stimulus I can’t control will often push the overwhelming to straight up distressing. A feeling in my chest that it’s too much. An entire bodywide feeling thats likely generated in my brain that goes something like “stop this now”, it’s like physical cringe mixed with distressing overwhelm and malaise/pain. My warning symptoms flaring almost like alarms. I begin overheating. Etc.

For me because of my severity I 99% notice it from sensory input but I believe cognitive exertion can contribute as well and that was the main contributor when I was mild.

I feel as though I could almost have written this myself, although I think I tend to first become aware of the discomfort in my neck/shoulders before I start sensing something wrong in my chest. For me, it most often results from a combination of different types of exertion, e.g. having to think while actively tuning out the noise of a busy waiting room, or to engage in conversation immediately following physical exertion. As I have talked about previously, trying to follow or play music seems to be the "sweet spot" that sets all of this off very, very quickly.

In general, what you have written closely corresponds to my past and current experience.

 

[DHagen]

it’s like physical cringe mixed with distressing overwhelm and malaise/pain.

This cringing or flinching sensation is really a key characteristic for me - almost like chewing on something especially sour, or made of alumin(i)um foil, or hearing nails on chalkboard... but it just keeps building.

 

[MrMagoo]

It sounds similar to, but not quite the same as “impending doom”?

I feel (after outside social interaction) a sort of fatigue which seems to radiate out from every cell of my body but isn’t located in one place. Usually by this point I have actual pain in my muscles as well, my breathing is shallow, I can’t hear out of one ear, my head is banging and I’m aware that any pretence of “masking” is beyond me, I look pained.

It reminds me of a hangover where you want to have a nap but you can’t, and you’re kind of trapped between consciousness and unconsciousness. Then, if you start to recall that you did something embarrassing whilst drinking, the doom hits from the stomach and it becomes beer fear/impending doom proper.

 

[Kitty]

It sounds similar to, but not quite the same as “impending doom”?

I definitely get a feeling like that. I also get a mild but rising panic response, which is difficult to talk about because it's viewed in mental health terms. It isn't that; it's a rational response to a situation.

It often used to be provoked by the lack of somewhere to sit at customer service or garage counters, once the OI had really started kicking in. It wasn't a panic attack, just an increasingly urgent need for a chair when there was no one at the counter to ask. It made me really snappy with people, which is very unlike me.

 

[DHagen]

It sounds similar to, but not quite the same as “impending doom”?

I definitely get a feeling like that. I also get a mild but rising panic response, which is difficult to talk about because it's viewed in mental health terms. It isn't that; it's a rational response to a situation.

I would agree that I tend to distinguish between two different experiences, both of which are perhaps relevant here. First, there is the "impending doom" feeling, which is a crushing sense that something has gone horribly wrong, that I am now going to suffer for it, and that there is nothing that can be done - the blade over my head is already descending. This is distinct from the unbearable itching, cringing, desperate feeling that whatever is happening needs to stop RIGHT NOW, which is more of a flight response and which seems closer, at least as I understand it, to what @Yann04 and possibly @Hoopoe are describing. The distinction may be more of my own personal categorization than anything reflecting a "real" difference in symptoms.