The feeling of being "poisoned" - what do we know about it?

I don't think mine would fit that pattern, since it occurred 24 years after onset and hasn't happened again in the 25 years since.

I suspect it might be because I haven't repeated that awful crash; it was the worst I've been in the entire course of my illness.
 
This is very interesting! Even in my worst crash, I mostly felt a ton of muscle pain and a horrible headache. But I also haven't been fully bedbound for more thab 24 hours, so I can see it be a severity thing.

I clearly remember genuinely thinking I was going to get the flu every week before I was diagnosed. It just never fully turned into one. And when I do actually get a virus, other infection or vaccination I sometimes feel double as good (but still feel ill, more like mild instead of moderate) and suddenly don't get PEM! Last time my toe got slight infected and suddenly I could make double the amount of steps for a month.. (although might simply be random, but never experienced that before in the year of tracking my steps)
 
Alinda said:
I clearly remember genuinely thinking I was going to get the flu every week before I was diagnosed. It just never fully turned into one. And when I do actually get a virus, other infection or vaccination I sometimes feel double as good (but still feel ill, more like mild instead of moderate) and suddenly don't get PEM!
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Ditto...I could write the same, word for word!
 
Alinda said:
I clearly remember genuinely thinking I was going to get the flu every week before I was diagnosed. It just never fully turned into one. And when I do actually get a virus, other infection or vaccination I sometimes feel double as good (but still feel ill, more like mild instead of moderate) and suddenly don't get PEM! Last time my toe got slight infected and suddenly I could make double the amount of steps for a month.. (although might simply be random, but never experienced that before in the year of tracking my steps)
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I haven't had the feeling of catching the flu thing, but a number of times have also felt much better if I got another infection. Very strange!
 
SNT Gatchaman said:
Or alternatively an early-onset feature that may be compensated (metabolically?) over time for those less severe. I don't seem to experience it much now. At the start it was ubiquitous, then I would describe "poisoned days" which moved from being majority days to minority days, eg 1 day in 10 and now pretty uncommon.

I didn't have capacity to do this but it would have been good to have a diary of these things to refer back to. Contrary to our BPS overlords and ideas around hypervigilance and rumination, I easily forget or gloss over quite how bad things were and my wife reminds me.
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You are onto something here.

I’m not sure on the poisoned thing partly as I don’t have the capacity to think on it in the last recent past (and I went thru a phase years ago of getting like a pain particularly down my left arm that was literally like burning poison so it’s tricky when you’ve used that term for something else)

But the gland related symptoms have puzzled me as either a clue or something regarding what’s going on. I’ve separated it for now from the flu like as I have always had specific rheumaticky aches that has been consistent but it’s just the all the glands feeling up (neck and face type that I notice as I haven’t bothered to check others and you just feel it under chin and neck etc) that had a time of going away but yet I think this correlated with when my body was in its worst situation almost (ie I know it wasn’t because things were better) and has returned I’ve noticed once I got the hydrocortisone dose (other things with that but I’m not sure how that overlaps with the me just that I was scary poorly when I started taking it with specific symptoms it helped with) ‘about right’ . Sort of typical that sorting something meant weirdly the glands stuff came back which all I can ponder on gut wise is that the glands bit disappearing was linked to when body was in even worse situation. Don’t get me wrong I feel horrific now rather than ‘better’ but get the sense my body + situation daily at that point was in crisis point when they went so I assume them disappearing wasn’t sign of a good thing.

I guess the glands is also the one it shocked me when it came back because it’s distinctive, literally in your face and when it returned I was so ‘familiar’ with it because I’d had it for decades before it just have slowly gone.

Where all the other stuff is so much careful thinking to remember and think on. And even the glands bit feels so obvious in my gut and so hard to communicate in a way that makes sense
 
Coincidentally (?) I have a fairly-persistent, but mild, pain down my left arm which I first noticed a month or two ago, and thought might have been due to some strenuous gardening involving lifting heavy rocks, but it's still there. I was fearing that it might be cancer related to a mole on my left arm (which a GP looked at some years ago and seemed to be OK).

The swollen neck glands is another thing that I have - it used to come and go but for years now it has been persistent.
 
Kitty said:
I wonder if there are two subgroups?

My normal PEM pattern is like @Alinda's. I always get 'flu symptoms with PEM, yet have only had the "poisoned" thing during my worst ever crash. Even though it was 25 years ago I can remember it very clearly.
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That’s interesting

I’ve been wondering whether the ‘poisoned’ vs ‘flu-like/coming down with a virus’ descriptions are attempts to describe the same kind of awful or different kinds of awful. Your experience would suggest the latter

Those of you who have experienced both, are you able to describe the differences to the rest of us?

I’m in the ‘flu-like/coming down with a virus’ camp
 
Ravn said:
That’s interesting

I’ve been wondering whether the ‘poisoned’ vs ‘flu-like/coming down with a virus’ descriptions are attempts to describe the same kind of awful or different kinds of awful. Your experience would suggest the latter

Those of you who have experienced both, are you able to describe the differences to the rest of us?

I’m in the ‘flu-like/coming down with a virus’ camp
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I do experience both the flu-like feeling and the poisoned feeling.

A description of my experience of "feeling poisoned" is in the members-only thread for this topic, here:
https://www.s4me.info/threads/poisoned-feeling.43442/post-659195

I have experienced none of the elements of the poisoned feeling in connection with viral infections.

For me, there is a clear distinction between feeling flu-like and feeling poisoned, both experientially as well as in terms of triggering events.

The poisoned feeling seems to occur after muscular exertion and with a clear delay. When I have experienced it after exertion that was (mainly) cognitive, the cognitive exertion usually involved or presupposed some sort of physical exertion as well (walking to fetch the papers for filing the tax return, getting excited during a phone call and getting up from my bed while talking).

The flu-like feeling can occur really fast from any type of exertion for me. It can hit ten minutes into a phone call, for example. It's more or less identical to past experiences of getting the flu as far as feelings of feverishness and whole body muscle pain go.

I experience the flu-like feeling without the poisoned feeling. The poisoned feeling comes on top of the flu-like feeling after muscular exertion beyond the threshold for triggering it. To me, they are clearly distinct.
 
The flu-like feeling vs poisoned feeling have also been distinctly different things for me. My best description of what I think of as the "flu-like" feeling, is the feeling of coming down with a virus... and I'm not sure if I've ever had it as part of PEM. I don't think so. I had it a lot following Covid, recurring for at least a month or so, if I remember. The GP thought I was still infectious going on symptoms for at least 8 weeks (but who knows). Otherwise have only had it when getting other viruses, which I haven't really had since covid 5 years ago.

The flu-like feeling for Covid was also very distinctive & different to any other viral illnesses in my life. I can only say it felt a type of "evil" (!) in my body... which it turned out to be. When I got covid for the second time i could recognise the same horrible feeling in my body.

I've also had the sense of "feverishness", fevers for months after Covid #1, but feverishness triggered by exertion for several years and not showing up on thermometer. I don't get that so often now.

Separately the poisoned feeling literally feels like poison and is an ongoing part of this illness triggered by exertion now, but before it was an ongoing state for several years.
 
MatthiasRiem said:
Of all my symptoms this one is the most unpleasant and the most difficult to describe. It involves an overwhelming feeling of whole-body discomfort (not localised to any body part) and a feeling of restlessness - an urge to move - also involving the whole body (not just the legs). No position feels bearable. If I could zip open my chest and exit my body I would. Sleep is impossible. It is accompanied by thirstiness and a feeling of nausea (but without an urge to vomit). My light and sound sensitivity are at their absolute worst when this hits. This is also when the presence of another person in the same room becomes completely unbearable. Just seeing a face will be overwhelming.
The restlessness causes me to move so much in bed, that this becomes a self-perpetuating cycle. (I may well exert more than the exertion that caused this in the first place.) The only relief I have found its to immobilise my arms and hands by lying on them and my legs by moving down in bed until my feet are pressed against the wall at the lower end of the bed. If I force myself to lie absolutely still in this way, sometimes for many days (apart from toilet breaks), I will eventually get out of it.
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I definitely experience that as well (edit: I could have written your description myself, so similar), although not as often as the flu-like symptoms. I always call it the "wired but tired", and often my HR is extremely low (40 to 65bpm) but beating strongly and often feels like I have tachycardia. Not moving helps both the flu symptoms and the wired but tired, but the flu is more often several days long.
I just wouldn't call it "poisoned".

Often its 1 or 2 days of restlessness, and after that I reach peak of flu symptoms. than I start slowly recovering until both feelings are (almost) gone.
 
I have had ME for 26 years. For the first decade I lived near London, and I often described my symptoms as the sensation of feeling "poisoned". Or a cross between the world's worst hangover and the worst flu I had ever had. Nothing ever budged that feeling.
Then I moved to a very quiet coastal area with very little traffic and the poisoned feeling just disappeared. My PEM now consists of extreme fatigue, pain, and brain fog, but I would no longer describe it as a sensation of feeling poisoned.
Is it because the air is cleaner here, or is it simply because moving house somehow caused all my symptoms to shift? No idea.
But it is a huge relief to no longer have that terrible poisoned feeling.
 
Ravn said:
I’ve been wondering whether the ‘poisoned’ vs ‘flu-like/coming down with a virus’ descriptions are attempts to describe the same kind of awful or different kinds of awful.
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Yes, they're very different. 'Flu-like symptoms are exactly that, but "poisoned" doesn't necessarily involve feeling quite so ill. It might do, but it can also exist on its own.

Even when my crash had receded enough to go back to work part time, I still had it. The 'flu-like PEM symptoms had gone because I'd had months of rest, but it was a long time before I lost "poisoned". It didn't stop in a definite way, just gradually faded as I recovered back to my previous level of function.
 
Alinda said:
I definitely experience that as well (edit: I could have written your description myself, so similar), although not as often as the flu-like symptoms. I always call it the "wired but tired", and often my HR is extremely low (40 to 65bpm) but beating strongly and often feels like I have tachycardia. Not moving helps both the flu symptoms and the wired but tired, but the flu is more often several days long.
I just wouldn't call it "poisoned".

Often its 1 or 2 days of restlessness, and after that I reach peak of flu symptoms. than I start slowly recovering until both feelings are (almost) gone.
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I have both wired and tired and poisoned.

Poisoned for me is like wired and tired but 10x worse. Like genuinely the worst I’ve ever felt in my entire life. Comes with immense nausea and sweating and reflux and I generally feel allergicky. I also can barely think (while tired and wired my brain is actually working suprisingly well often on fast mode). And the poisoned feeling I just feel so awful I feel suicidal. While tired and wired I just can’t stop! It’s so annoying.

When I was mild I often had the tired and wired but never had the poisoned.
 
StellariaGraminea said:
I haven't had the feeling of catching the flu thing, but a number of times have also felt much better if I got another infection. Very strange!
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MeSci said:
Yes - I've often felt better when I get an infection, although I rarely seem to get them now.
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But isn't this just another factor backing up the theory of ME/CFS being caused by the immune system's reaction to a virus or whatever not shutting off once the infection has passed? You get a new infection, the immune system wakes up again, but this time does - at least to some extent - shut down again afterwards. I'm still wondering if a Covid jab and her reaction to it could be responsible for the apparent improvement in my caree's condition.
 
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