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

[StellariaGraminea]

After several months where I did not experience it at all. It has returned. No idea why. Can't say it was anything I did differently. I've seen others describe this feeling too. It's quite unpleasant.

Is anything known about it? even how common it is in ME/CFS? Do many have it here?

 

[forestglip]

Note that we have a members only thread for this topic as well: Poisoned Feeling

 

[StellariaGraminea]

Note that we have a members only thread for this topic as well: Poisoned Feeling

Oh thank you! I had searched "poisoned" but didn't see it, maybe I was searching wrong.

 

[Peter T]

It is such a horrid symptom, I tend to get it when in PEM as well as or instead of feeling nauseous.

It is (to me at least) strange that ME can sometimes subjectively feel like an absence of something and then at other times feel like something poisonous or toxic is in the body. I have never tried anti nausea medicine, but apart from that possibility the only thing that seems to help me is rest.

For me this seems to be distinct from my food intolerances unless there is some other problematic food stuff I have not yet identified, I am usually well hydrated so that is not an issue.

 

[StellariaGraminea]

It is such a horrid symptom, I tend to get it when in PEM as well as or instead of feeling nauseous.

Yes, I think it's associated with PEM for me too or just a worsening of how I am, not always sure. I haven't had food intolerances but you've given me the idea to check re timing of onset... Wondering could there be a food issue that only flares at certain times, hadn't thought of that.

I think cognitive work / processing background noise may be a factor for me. Or just time upright. I don't really wake with it anymore but it develops over the day.

 

[Peter T]

Wondering could there be a food issue that only flares at certain times, hadn't thought of that.

My food issues in part have a predictable time lag. Response to gluten, as long as I am gluten free when it is ingested, has almost exactly a 24 hour delay before symptoms emerge, caffeine a six hour delay, though having said that any response to alcohol is much less consistent and with high sugar foods such as chocolate or ice cream I need to investigate further to be clear what actually are the trigger ingredients.

 

[Yann04]

For me it feels like the inbetween state between „lethargy-esque“ PEM and the tired and wired feeling.

While resting might help I haven’t found it always helpful as that state makes me feel so awful I can become quite suicidal during it even though I‘m not actively suicidal generally.

So what I do is I generally just distract myself until it passes then rest.

 

[Alinda]

I never understood what people exactly mean with "poisened". My PEM and general symptoms are very much a mix of feeling like I am just about getting the flu and a migraine with some orthostatic problems randomly mixed in.

Maybe I just don't experience it?

 

[OrganicChilli]

I never understood what people exactly mean with "poisened". My PEM and general symptoms are very much a mix of feeling like I am just about getting the flu and a migraine with some orthostatic problems randomly mixed in.

Maybe I just don't experience it?

No, I'm the same. I only experienced what I think people refer to as "poisoned" twice. And personally I would have described it as feeling hungover. I've been hungover plenty of times, but I've never been poisoned so even though I trigger PEM frequently, I never understood what people were talking about.

 

[StellariaGraminea]

While resting might help I haven’t found it always helpful as that state makes me feel so awful I can become quite suicidal during it even though I‘m not actively suicidal generally.

So what I do is I generally just distract myself until it passes then rest.

I find it so unpleasant too I can't bear just resting. Have to distract myself too until it passes.

 

[StellariaGraminea]

My food issues in part have a predictable time lag. Response to gluten, as long as I am gluten free when it is ingested, has almost exactly a 24 hour delay before symptoms emerge, caffeine a six hour delay, though having said that any response to alcohol is much less consistent and with high sugar foods such as chocolate or ice cream I need to investigate further to be clear what actually are the trigger ingredients.

I definitely start paying more attention to the timing of when it starts for me. My diet is pretty much the same but I could easily have missed something. Interesting that you've noticed such specific delays with different foods.

 

[StellariaGraminea]

I never understood what people exactly mean with "poisened". My PEM and general symptoms are very much a mix of feeling like I am just about getting the flu and a migraine with some orthostatic problems randomly mixed in.

Maybe I just don't experience it?

I wonder? I experienced this feeling from year 1 and had never heard of it mentioned before at that stage, wasn't in touch with patient groups or anything like that, and the only way I could describe it is the feeling of being "poisoned", like some toxic substance was in my body that shouldn't be there.

Have never been hungover so can't compare with that. Have also never been poisoned! but that is still the only word that comes to mind to describe it.

 

[Kitty]

My experience of it wouldn't be like a hangover. As well as nausea, people who feel that ill with a hangover tend to have headache and sound/light sensitivity.

While I do have nausea with "poisoned" there's rarely a sense I might actually throw up, which isn't always the case with a hangover. It's just grinding nausea.

The nearest thing I've experienced is being shut in an enclosed space with wet gloss paint. The fumes seem to get right into your mouth and nose and lungs, so you wish you could sit in a stiff onshore breeze with a pint of chilled water to wash it out.

"Poisoned" is similar in that something has got right inside your body, but it feels as if it's in your bloodstream and gut as well as mouth and lungs. You're just as desperate to get rid of it, but unlike getting fumes out of your body, you can't imagine a remedy. I find myself drinking a lot of water, but it doesn't help.

I think if you'd experienced it, you'd know. The only adequate word for it is "poisoned"; it's striking how many people come up with the same term.

 

[MeSci]

In the early days of my ME (1996) I suffered terrible nausea and vomiting, but then I was drinking a lot (alcohol) and also eating (when I could eat) probably ME-inappropriate foods, including gluten, which I later realised I couldn't tolerate.

I was also trying various prescribed drugs, some of which helped and some of which seemed to make me worse.

 

[V.R.T.]

My experience of it wouldn't be like a hangover. As well as nausea, people who feel that ill with a hangover tend to have headache and sound/light sensitivity.

While I do have nausea with "poisoned" there's rarely a sense I might actually throw up, which isn't always the case with a hangover. It's just grinding nausea.

The nearest thing I've experienced is being shut in an enclosed space with wet gloss paint. The fumes seem to get right into your mouth and nose and lungs, so you wish you could sit in a stiff onshore breeze with a pint of chilled water to wash it out.

"Poisoned" is similar in that something has got right inside your body, but it feels as if it's in your bloodstream and gut as well as mouth and lungs. You're just as desperate to get rid of it, but unlike getting fumes out of your body, you can't imagine a remedy. I find myself drinking a lot of water, but it doesn't help.

I think if you'd experienced it, you'd know. The only adequate word for it is "poisoned"; it's striking how many people come up with the same term.

I wouldnt compare it to a regular hangover, but back in the day I regularly drank myself to the point of experiencing alcohol poisoning or alcohol withdrawals. And that really was similar to that total poisoned feeling form of PEM.

Although as I've said I think I may have had a prodromal form of ME back then so maybe I was experiencing PEM in those moments. But I never had noticeable PEM outside of hangovers afaik.

 

[Mij]

My dear friend who passed away in 2016 from ME complications felt poisoned for 18 years- day one from developing M.E. He was a patient of Dr. Chia for 11 years and saw several doctors who saw pwME and he couldn't t figure it out. He also suffered from severe insomnia and autonomic dysfunction.

He described it as 'brain infection/inflammation".

 

[SNT Gatchaman]

I never understood what people exactly mean with "poisened". My PEM and general symptoms are very much a mix of feeling like I am just about getting the flu and

I'm the opposite, as I've never really framed symptoms as "flu-like". I also don't get enlarged lymph nodes, but sometimes get a sore throat. Mostly it's the nausea, headache, OI, profound weakness, shakiness and a pervasive feeling of 'poisoned'.

 

[Mij]

My dear friend who passed away in 2016 from ME complications felt poisoned for 18 years- day one from developing M.E. He was a patient of Dr. Chia for 11 years and saw several doctors who saw pwME and he couldn't t figure it out. He also suffered from severe insomnia and autonomic dysfunction.

He described it as 'brain infection/inflammation".

My friend felt like this 95% of the time. It was not related to PEM, in fact he didn't relate to my experience with delayed PEM at all.

 

[Kitty]

My PEM and general symptoms are very much a mix of feeling like I am just about getting the flu and a migraine with some orthostatic problems randomly mixed in.

I'm the opposite, as I've never really framed symptoms as "flu-like".

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.

 

[SNT Gatchaman]

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.