Alcohol intolerance in ME/CFS - Includes a poll. Please do the poll even if your answer is no.

Have you had alcohol intolerance with ME/CFS and what sort?

  • No

    Votes: 16 9.5%

  • Worsened 'hangover' effect the next day

    Votes: 53 31.4%

  • The taste became unpleasant

    Votes: 8 4.7%

  • Just 'put off' - I don't feel like having it

    Votes: 27 16.0%

  • Upset stomach - soon after

    Votes: 18 10.7%

  • Aggravation of ME/CFS symptoms soon after

    Votes: 83 49.1%

  • Pains elsewhere

    Votes: 12 7.1%

  • Other unpleasant symptoms

    Votes: 68 40.2%

  • I've been avoiding alcohol for so long now that I can't remember the symptoms that led me to avoid

    Votes: 24 14.2%
  • Total voters
    169
Sasha said:
I've been thinking about this. Until the last few days, on this thread and the 'Concept of ME/CFS' thread, I don't recall any PwME using this term, and if someone had asked me whether feeling poisoned was a feature of ME/CFS, I'd have said 'No'.

This is clearly a failure of my memory, but the fact that I didn't remember it makes me wonder if it's relatively rare, or something that only gets discussed in relation to something very specific that doesn't relate to me much, such as here with alcohol intolerance (I rarely drank alcohol even before being ill), or only occurs in a subgroup of patients, such as those who feel poisoned when they have PEM (if people do - I'm not sure if anyone has said that).

A search for 'poisoned' on the forum brings up about 300 posts (not all relating to the symptom of being poisoned). I wonder if it's worth mining the forum for those mentions.

We've been discussing on another thread @forestglip's idea to do a daily summary of the forum's content but people had concerns about accuracy, privacy, fossil-fuel energy use, copyright, etc. so I think it's not going ahead but I wonder whether using it to list verbatim - not summarise - every post where someone discussed being 'poisoned' as a symptom might be a good use. (Perhaps similar listings could be done for other symptoms that @Jonathan Edwards is interested in.)

It's a use that would have to be discussed and agreed by the S4ME committee, of course.

It would also be possible to produce such a listing for 'poisoned' the old-fashioned way of cutting and pasting. Maybe we could share the work.
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I also used the term feeling poisoned the next day after drinking a bit more alcohol but I am not sure if it´s accurate. In my case it´s definitely something else than my "normal" PEM, I feel somehow destroyed, unwell, like after an accident with a truck but difficult to describe. Even the day after drinking alcohol I can have my usuall energy range, but I feel very destroyed physically. When I was healthy I never felt like this after drinking maybe 7 beers. Now if I drink ocassionally 2 beers, I feel totaly destroyed the next day. Normally you dont feel that destroyed after drinking 2 beers.
This was always very strange for me, why so many ME/CFS patients seem to have alcohol intolerance? I dont know if it´s also common in another illness. But I think definitely worth to investigate it and maybe it can tell us something interesting. Couldnt it be something wrong with our livers?
 
I’m not sure if poisoned works for me although the quantities were small, certainly compared to what I drank pre-ME. From what I remember it was perhaps like all the bad bits of drinking without any of the good bits?

The idea of something not being broken down or processed in the way it did pre-ME would sort of make sense to me in this context.
 
hotblack said:
The idea of something not being broken down or processed in the way it did pre-ME would sort of make sense to me in this context.
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Suggestions from the thread linked earlier, https://www.s4me.info/threads/alcoh...yndrome-2023-maciuch-jason.33560/#post-549305

one of the theories for an alcohol-specific intolerance is that downstream byproducts of ethanol breakdown are actually processed in the mitochondria, which are known to be dysfunctional in ME/CFS. This might cause those byproducts to build up, especially in the neurons, and thus cause an extremely exacerbated reaction to alcohol. It's possible that other common sensitivities might be more mediated by histamine rather than mitochondrial dysfunction (MCAS being a common comorbidity and all), which might drive some of the differences in sensitivities. However, without experimental confirmation this is really just speculation.
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Sasha said:
This is clearly a failure of my memory, but the fact that I didn't remember it makes me wonder if it's relatively rare, or something that only gets discussed in relation to something very specific that doesn't relate to me much, such as here with alcohol intolerance (I rarely drank alcohol even before being ill), or only occurs in a subgroup of patients, such as those who feel poisoned when they have PEM (if people do - I'm not sure if anyone has said that).
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I don't think it's necessarily linked to alcohol at all, so it may need a separate discussion. It's a feature of PEM for some people, and severe or long-term crashes in others. I've only had it in my worst periods of illness [edit: it persisted for months and was never a consequence of alcohol], but my description seemed similar to other people's. It did used to feature in symptom lists for ME/CFS.

I'm not sure why it's not discussed more. It could be that it's only present in a minority, or that people are uncomfortable using the term 'poisoned' because it sounds a bit off the wall, but they can't think of a better one.
 
hotblack said:
I’m not sure if poisoned works for me although the quantities were small, certainly compared to what I drank pre-ME. From what I remember it was perhaps like all the bad bits of drinking without any of the good bits?

The idea of something not being broken down or processed in the way it did pre-ME would sort of make sense to me in this context.
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When lowered blood volume might play a role in ME/CFS, could drinking alcohol work way faster and more furious?
 
Kitty said:
I'm not sure why it's not discussed more. It could be that it's only present in a minority, or that people are uncomfortable using the term 'poisoned' because it sounds a bit off the wall, but they can't think of a better one.
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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.
 
Sasha said:
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.
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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.
 
Varda said:
”poisoned” [...] ”like every cell is dying”.
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Thanks, Varda - 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':

EzzieD said:
I relate to this 100%, 'tiredness' or 'fatigue' has never been the issue for me either, but rather being hit with feeling deathly ill and toxic. And then a frightening sheer total exhaustion following along secondary to that. The idea of running toxicology tests when someone with ME is in that state does indeed sound interesting. It does feel like becoming filled with toxins and the body not removing them properly.
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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.
 
Whilst I haven’t ever used the word poisoned to describe PEM, before MECFS I had some experiences that are as the closest thing to my worst PEM - really awful dehydration and severe migraine from a nasty bacterial stomach infection, instances where I’ve been doing taxing activities in the hot sun in humid climates and not drank enough water (when working in hot climates), when I been very sick from drinking far, far too much in my early uni days, the come-down after taking other intoxicating substances and not mitigating it in advance (my late teens were adventurous), and when I had a flu type illness in the Philippines which I was told was probably dengue.

Come to think of it, I think I get a shadow of the above if I drink ‘too much’ now - by too much I mean more than two drinks.
 
Sasha said:
something completely pervasive.

Very interesting! 'Poisoned' people, is this the aspect that you're trying to get across when you say you feel poisoned?
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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!
 
MrMagoo said:
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!
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I like seeing that face appear too, once I had a salad with some raw red onion,.let my cat get a good sniff thinking "hehe you'll hate this" and she sneezed all over my salad
 
Jonathan Edwards said:
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.
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Well they do it because it’s overpowering and likely to cause illness…it’s nature, not nurture
 
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