Alcohol Intolerance poll. Please do the poll even if your answer is no.

I think that one problem with 'poisoned' is that it sounds like a theory rather than a description, which is maybe why people don't want to use it, but there's clearly something about the experience that is bringing out some kind of common assumption about what it must feel like to be poisoned.

 

I should mention head pain in relation to alcohol hangover, which was not like before ME. In ten years undiagnosed there were a couple of occasions where I just said to hell with it and overindulged in the hope it would anaesthetise me a bit.

During hangovers which follow such folly, as it didn't help, I felt head pains I would describe as punctate cutting pains, like pins being stuck in my brain, ie within the skull, same kind of sensory space as headaches.

These are distinct from other pains I get in that region, planar cutting pains, which often accompany phantosmia of very dry astringent chemical odours and suspected viral recurrence. These are flat planes of pain which also give a sensation of cutting, e.g. as if a large flat blade was cutting horizontally through my "brain", symmetrically, which might imply brain linking structures like the corpus callosum or midbrain. These persist as long as the viral episode and then depart when it ends.

So something is going on with pain receptors, apparently mapping to the brain, being stimulated in different ways by these two phenomena. Before ME I never had such cutting pains. Goodness only knows what is really going on in there. Never had an MRI.

 

I did not meet another patient with ME/CFS for more than a decade after becoming ill. I was shocked to discover other people characterized that feeling as ”poisoned”. That’s how I had described it to my friends and family for years. It says something about this disease that people who’ve never met, from different parts of the world, use the same word to describe the sensation.
For me this is the single worst sensation, unlike anything else. I also characterize it as ”it feels like I’m dying”, ”like every cell is dying”.

Very dramatic, I know, I just don’t have other vocabulary to express how bad it is.

 

Thanks, CorAnd - maybe that's the key concept about feeling 'poisoned' - that it feels as though it's something happening in every cell, not just in the muscles or the brain, but something completely pervasive.

Very interesting! 'Poisoned' people, is this the aspect that you're trying to get across when you say you feel poisoned?

 

Just read this on the 'Concept of ME/CFS thread':

This is sounding very much like 'poisoned' so if we end up looking into what that really means in either the context of alcohol intolerance or ME/CFS generally, we should probably look for 'toxic' and 'toxicity' while we're at it.

 

Yes, I think so. To me, the overarching impression is that it's something that shouldn't be there, and that's why 'poisoned' seems to describe it.

You know how when you're exposed to fumes, or you eat something bad, instinctively you want to get it out of your system? I drink lots of water, partly because I'm abnormally thirsty, but I also think there's a drive to wash it out. One of its effects is that everything tastes awful.

It's probably why people link it in their minds with hangovers or taking particularly nasty antibiotics.

 

I like the "Have you had ... " in the question, because I'm back to being able to drink now, but stopped in the first few years of ME. My main symptom when ME hit was headaches, so I would do anything to reduce their number. In my early ME years I went to a christmas party with colleagues (before I knew how to avoid/survive social situations with ME) and was handed a glass of champagne, after a few sips I had an immediate splitting headache, so didn't drink again for a couple of years. I think I was also beginning to notice that drinking wine when you feel like you've got a hangover anyway wasn't much fun any more.

Now I'm back to being able to drink again, although I hardly do for non-ME related reasons. Before I had ME I would happily have a glass or two of wine a night most nights. Now I have one glass a week, one reason being that all the studies about red wine and good health turned out to be bullshit, the other being I've seen what can happen to men who take up wine drinking as a hobby when approaching retirement, so thought cutting it out now might be a sensible precaution. Stopping has been no great loss. Not having a social life has also made it easier.

 

It makes me do the face the cat does when attracted to something I’m eating, pokes head in close in the hope of a “sample”, and gets a big whiff of citrus and recoils in disgust, occasionally looking back disdainfully at me and my vile snack!

 

Thanks for all the input.

This is interesting.

I am going to leave an analysis for just a bit longer. We have 78 voters, which is impressive, but I would like to see if we can get just a few more. I can see some useful trends emerging. There seems little doubt that this is a common phenomenon for PWME/CFS.

 

Well they do it because it’s overpowering and likely to cause illness…it’s nature, not nurture

 

I just remembered that the MEA had done an alcohol intolerance survey about a year ago:

https://meassociation.org.uk/2024/01/alcohol-intolerance-me-cfs-and-long-covid-survey-results/

 

Excellent find! Lots of 'poisoned' people on there too.

 

Thanks - the results look very similar to those here, which is encouraging.
I am interested in the timing, but I will say more in a while.

 

I think I understand what people are talking about with the "poisoned feeling", but not entirely sure, so perhaps we should explore it some more - during some crashes, there is a phenomenon where I feel as though I am becoming progressively but dramatically weaker over the course of hours, accompanied by severe pain of a burning character, along with very significant cognitive dysfunction and waves of nausea along with all the usual ME symptoms cranked up to 11. There is no option but to lie entirely still and motionless, even though there is an abysmal tempest (to crib a line from Dante) going on within. All sensory aspects are heightened dramatically, which is quite odd as one's senses are heightened and yet cognition is dulled. Even drawing breath seems painful & effortful. It seems to reach a plateau over a number of hours, remain at its peak for between a few hours to a day or two, and then subside over a number of hours more. Is this what we are talking about with "poisoned", or something more limited, not crash-related?

As for alcohol intolerance I ticked two options: "other unpleasant symptoms" (over an hour to hours, on the same day) and "aggravation of ME/CFS symptoms soon after" (following day(s)). Never experienced the aversion that some mention.

 

In my own n=1 experience, what I mean by 'poisoned' is that I feel like my system is full of some sort of noxious substances that have built up and won't clear. This is not necessarily only from alcoholic drinks, nor from a crash, but I also feel like that when I first wake up in the morning. It's like there's been a build-up of toxic by-products during sleep's maintenance routine that my body should have been clearing, I guess by sending it off to the urinary and intestinal systems, but instead has just been left swimming all through the system making me feel appallingly ill and exhausted, rather than refreshed, when I wake up.

It can also happen during the day at any time, not related to anything in particular.

 

Not quite, at least not for me.

Have you ever had to take a medication or been somewhere heavily polluted by smoke, so that it felt as if the substance had infiltrated every part of your body? It's that, on top of all the other symptoms of severe PEM. It's not an identifiable thing like smoke, but it does feel like a pollutant.

I don't know about others, but it wasn't a short term thing for me. It was still there even when most of the other crash symptoms had reduced enough that I was starting to return to work.

I haven't experienced it for 15 years, but I can recall it so clearly that thinking about it gives me the whole-body shudder I got as a small child when given cough medicine.

 

This seems to describe a theory of what's happening, although I know you don't necessarily mean it literally.

But this describes the actual symptoms. What I'm struggling with in people's descriptions is how 'ill and exhausted' doesn't feel like a proper description such that 'poisoned' needs to come in. Can you put your finger on what physical sensation or sensations aren't being covered by 'ill and exhausted' and lead you to the 'poisoned' idea?

I hope I don't seem as though I'm giving you a grilling, @EzzieD! I seem to be getting a bit obsessed with this 'poisoned' thing.

When I wake up in the morning, I think I feel similarly to you, but the 'poisoned' descriptor hadn't occurred to me. I find that when I move, the feeling of illness in my muscles wears off, as though something is indeed being flushed out with the movement, and perhaps people feel that that's how it would be if they'd been poisoned. Does that strike a chord?

 

I guess I didn't describe that well enough, it starts with waking up groggy feeling full of toxins (hence 'appallingly ill'), followed by feeling 'exhausted' rather than feeling 'rested' or 'refreshed' as I wake up more fully.

Yes, that seems exactly it, after waking up feeling like I'm at death's door I do a bunch of stretching, yawning & deep breathing in bed and it makes me feel like toxins that accumulated during sleep are being 'flushed out'. It improves further when I get up and walk around and get the circulation going, although hard to do because I feel exhausted after the night's sleep. So I then have to go sit down and rest for a while after all that! And then I feel a bit more what passes for 'normal' for us and can get on with making breakfast etc.