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

[Sasha]

Prof. Julia Newton has/had an interest in primary biliary cirrhosis and its relationship to OI, and used to talk about ME/CFS in relation to it all, IIRC. We have, of course, another thread on the need of PwME to lie flat. Here's a link to one of her OI/PBC papers in which she says, '100% of precirrhotic and 81% of cirrhotic primary biliary cirrhosis patients exhibited autonomic dysfunction'.

No idea if that's anything to do with anything but thought I'd just throw it in.

 

[bobbler]

It would be interesting to see how it’s described in other countries/cultures.


In life I’ve been “poisoned” by alcohol (over consumption and “dodgy” holiday drinks decanted into name brand bottles known as “petrol”) and there was once a dodgy carbon dioxide leak which made us all sleepy one day at Uni. I’ve had food poisoning which means spending a lot of time in the bathroom.

When I have a migraine I feel awful, but I know that it isn’t poisoning because I know what a migraine is. If I didn’t know, would I describe it as being poisoned? Possibly, especially due to the postdrome aka “hangover” the next day. You’ve got pain, nausea, headache, but no temperature or shivers or sneezes.

You see I didn’t blink at the word too much because my most distinctive food poisoning (can’t remember another) was a curry where a few hours later I woke up with big yellow spots/splodges across my vision - somewhat migraine-like with the aura thing except turmeric yellow and across more of eye (whereas aura is light and starts at edge before spreading across vision) and had a banging headache

then I was sick and whatnot etc (it's quite interesting actually because this one I know was food poisoning as 3 of us had the same meal and we compared notes somewhat. The other 2 were a couple and the female otherwise healthy other than what turned out to be some tropical issue meaning a 'sensitive' gut had symptoms that sounded like before she went to sleep and more 'standard'. The male was a sturdy soldier and thought he was fine until 24hrs later, long enough we'd have been confused without my 'yellow spots' and then were confused how he survived, but then he was very ill indeed, I guess because it had been in his system longer).

but as from ME anyway I sometimes get a poisoned toxin feeling (which is more systemic to a ‘blood and cells’ type feeling and not ‘nausea’ ) I can’t describe I assumed it was that.

 

[AliceLily]

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

I never drank alcohol in my severest years of ME and when I have since I have only sipped. I feel dehydrated with the ME so I do have an aversion to drinking more than sips because I already feel dehydrated.

I felt a bit overwhelmed yesterday when reading posts when 'poisoned' was introduced to this thread because one of my severest symptoms was feeling poisoned. I told a doctor that I had a very toxic feeling all throughout my body. This symptom was very significant in my severest years. Whether that toxic, poisoned feeling has a connection to liver problems that alcohol causes also I don't know. But to me it is two separate types of poisoning for now.

 

[Sasha]

I felt a bit overwhelmed yesterday when reading posts when 'poisoned' was introduced to this thread because one of my severest symptoms was feeling poisoned.

Sorry to hear that, @AliceLily - it's not very nice to be reminded of something horrible like that.

 

[AliceLily]

Sorry to hear that, @AliceLily - it's not very nice to be reminded of something horrible like that.

Quite alright @Sasha I was overwhelmed because I wanted to post yesterday but cognitively not up to it.

 

[Kitty]

On alcohol intolerance: do people find there is a difference between different strengths of alcohol - does the intolerance correlate with alcohol %/content?

A bit hard to know, really. My threshold was low, the effects began quickly, and I don't drink quickly.

With jenever, gin, or malt whiskey I might sometimes finish Drink No 1, but there definitely wouldn't be a No 2. With something in a bigger glass, I wouldn't even finish No 1.

There could have been a dose response, but there was no practical difference. If a drink contained enough alcohol to be legally age restricted, it made me feel terrible. Didn't take long to work out that I might as well spend my money on things that don't make me feel terrible.

 

[Ravn]

It's a long time since my last drink. I ticked altered taste and gastro symptoms, both used to happen very quickly, after just a few sips for the former, a little later for the latter. I can't remember if there were any later symptoms, possibly because I only ever consumed alcohol in conjunction with exertion so any late alcohol effects would have blended in with PEM

Thinking about it some more I also ticked don't feel like having it. Sometimes with food I really like I have a strong urge to eat much more than I know my digestion can handle. Sometimes I resist, sometimes I give in, with predictable results yet a few months later I'll do it all again. No matter how crook I feel after eating, I can't seem to develop a useful level of aversion. I never have any such urge for alcohol despite really liking the taste of beer and cider in particular (at least until the taste alteration kicks in). In fact when I saw this thread I seriously considered pinching one of my husband's beers for an experiment but haven't done so because the thought alone is aversive somehow

ETA: lest anyone thinks eating disorder, which I don't have, when I say I give in to overeating on something nice I mean eating a full normal-sized meal which is more than I can handle in one sitting, I usually eat little and often

ETA2: I'm still not making sense to myself... I think what I'm trying to get at with comparing overindulging (relative to individual tolerance) in food vs in alcohol is that the alcohol aversion doesn't feel like it's just some sort of Pavlovian reaction to experiencing symptoms, if it was you'd expect the same to happen after eating to the point of experiencing unpleasant symptoms but that doesn't happen

 

[Ravn]

Question for those of you who use the term poisoned:

Do you think you use it for the same constellation of awfulness that others might use the term malaise for? Or do you use both terms to separate between two different phenomena?

I don't use the term poisoned myself because I associate it with my one experience of food poisoning which had me in the bathroom with my head over the toilet for hours and that's not something ME does to me, but I gather that's not what most pwME mean with feeling poisoned

 

[bobbler]

Here's another random one. At the times where I was more up to drinking, trying to 'norm' somewhat eg as a student etc and getting away with it by sticking mainly to vodka and a lot of mixer (which was also really useful as a 'normal drink' for weddings or anything else because people don't know if you've got a soft drink in your hand or not) but sometimes the pre-bottled stuff. Well even then there was a really obvious time-of-day-effect I noticed (well it's not a case of notice with these things is it, because it bangs you over the head).

Evening and night ie proper evening was 'OK' from a tolerate it (ie doing it at the time within my various limits, hangover a different matter of course) vs I could not daytime drink at all. I mean not that I ever saw the attraction but I remember trying to join those who wanted to eg on a Sunday as an alternative to 'a night out' and realising it was a dead loss because one drink at 9pm was I estimated 3-4 times stronger in its effect during the day. I remember describing it as that at the time having tried a few times and eventually just saying it to people as how I was quite astounded, and that being why I wouldn't be joining them (in a tipple until much later)

So half an alcopop sent me home to bed and incapability at 4pm on a day where I hadn't been sleepy. It was useful to know because it meant those odd work occasions where you get a toast that wasn't wine-based anyway during the day I absolutely had to go to the level of 'make a point' refuse if needed. Even after-work drinks 6pm onwards would be in slightly better but still not great territory timing-wise so normally didn't (as well as other reasons).

I don't know whether this was due to other comorbidities I have that were untreated back then and will say that potentially I remember the odd holiday when I could go on them where I might have had a few in the day and got away with this, though they would have been very watered down whatevers and certainly not particularly early on in the day (but you know I was well enough to fly and still leave the room, plus time differences).

 

[forestglip]

Question for those of you who use the term poisoned:

Do you think you use it for the same constellation of awfulness that others might use the term malaise for? Or do you use both terms to separate between two different phenomena?

I don't use the term poisoned myself because I associate it with my one experience of food poisoning which had me in the bathroom with my head over the toilet for hours and that's not something ME does to me, but I gather that's not what most pwME mean with feeling poisoned

I hear "poisoned" so often, but I don't have a good idea of what that really means. "Malaise" feels like it fits me fine. I don't know what it feels like to be poisoned. Is it a similar feeling to food poisoning? Alcohol poisoning?

 

[AliceLily]

o you think you use it for the same constellation of awfulness that others might use the term malaise for? Or do you use both terms to separate between two different phenomena?

I would separate them. There was something very toxic in my system. It really did feel like you had swallowed a poison and it reached every cell in your body. I think it contributed to my stomach nausea which I had nearly daily for years.

 

[AliceLily]

I would separate them. There was something very toxic in my system. It really did feel like you had swallowed a poison and it reached every cell in your body. I think it contributed to my stomach nausea which I had nearly daily for years.

I remember one particular day when very severe where I was shocked by the feeling in my bloodstream. I could feel something travelling through my blood vessels that should not have been there. I never felt that again. You just don't feel the insides of your bloodstream, but I did that day.

 

[AliceLily]

I hear "poisoned" so often, but I don't have a good idea of what that really means. "Malaise" feels like it fits me fine. I don't know what it feels like to be poisoned. Is it a similar feeling to food poisoning? Alcohol poisoning?

My memory might be off here because I have to go back 40 odd years to remember what it felt like to have a hangover after being sick from too much alcohol. I think the stomach nausea of ME felt similar to what your stomach feels like with a next day hangover?

 

[forestglip]

My memory might be off here because I have to go back 40 odd years to remember what it felt like to have a hangover after being sick from too much alcohol. I think the stomach nausea of ME felt similar to what your stomach feels like with a next day hangover?

Maybe I don't feel "poisoned" because I never experience nausea with ME/CFS?

Edit: Does anyone feel "poisoned" but never experience nausea as a symptom of ME/CFS?

 

[bobbler]

Question for those of you who use the term poisoned:

Do you think you use it for the same constellation of awfulness that others might use the term malaise for? Or do you use both terms to separate between two different phenomena?

I don't use the term poisoned myself because I associate it with my one experience of food poisoning which had me in the bathroom with my head over the toilet for hours and that's not something ME does to me, but I gather that's not what most pwME mean with feeling poisoned

I don't use the term much and haven't used it here (partly because when I've felt poisoned by alcohol I haven't really because I've know where that came from sort of thing vs my ME symptoms). And my PEM symptoms are very rheumatically-type aches that spread ie needing cold sheet and rubbing wrists and hands and like a laypersons assumption of what CO poisoning would be re: being knocked out or headachey/migraine sometimes but became clearly related to exhaustion as trying to do anythign (with brain or 'getting/waking up') prolonged it and in pain and aches everywhere (this is the bit where I feel like I've had this too long and right now can't 'do the work' on unbundling some of these).

But there's a different grungy something in the system element (again not 'nausea' but very much including the non-gastro parts and feels more like cells/blood) that isn't always there in any pattern, and I'm not sure whether it is specific to PEM - and that's a hard one because of course I'm likely to be always in some sort of PEM from something that happened some time of some type not having cleared.

And for me I, in particularly used to, (so I wonder whether it is more to do with exertion when you are moderate than 'severity') get in particular down my left arm a feeling of poison in my vein, as in it would hurt a lot and was definitely the vein, particularly in the top to elbow part, and I'm thinking slightly acid-like (but not burny or stingy like acid more hurt like lactic - and this was wayyy before I knew anything about PEM and exercise links) but as I'm being retrospective that could be nonsense. And of course this is technically a different term

I'm really going off-piste here because that had nothing to do with alcohol I don't think, or not in any kind of clear pattern. I'm not left-handed, but did do roles where there were time periods I would lift a lot during certain days for example but it wasn't obviously enough connected to that I put my finger on it being specifically that (but then this was far before Workwell stuff was out, and I just got laughed at and told not to tell anyone else because they'd think I was mad etc - so this is really hard to look back at these ignored thoughts that were only 'me with me': this is what the 'BS CBT culture' on this occasion not just cfs-CBT does/did to us, whether we did it or not we got aggressed and 'taught' on these kinds of things directly because of it).

 

[AliceLily]

Maybe I don't feel "poisoned" because I never experience nausea with ME/CFS?

@forestglip I am just guessing it could have contributed to the nausea. There could be other mechanisms causing the nausea. I use to think the poisoned feeling was some kind of neuro-toxin (if there is such a thing?).

 

[hotblack]

A few disjointed comments
- I drank plenty before ME, sometimes probably far too much and far too often, other times normally but tolerance was high. It was only with ME that changed rapidly.
- I do get nauseous with my ME and various symptoms would indicate a physical response to the body not liking something in the bloodstream. Sometimes nauseous sometimes not and more ‘woozy’.
- But poisoned doesn’t feel the right word to me. Maybe because of its weight or connotations or acuteness. And it wasn’t how I’d describe the reaction to drinking. But I do I think understand what people mean by it, the body is rejecting something that some systems see as foreign that it needs to clear out?

 

[Turtle]

Could pwME have their own brewery inside?

 

[Kitty]

Question for those of you who use the term poisoned:

Do you think you use it for the same constellation of awfulness that others might use the term malaise for? Or do you use both terms to separate between two different phenomena?

I would separate them. There was something very toxic in my system. It really did feel like you had swallowed a poison and it reached every cell in your body.

I agree, ordinary ME/CFS malaise (which I get every day) is very different to 'poisoned'.

Maybe I don't feel "poisoned" because I never experience nausea with ME/CFS?

I get nausea regularly, but it's not the same thing (I'd just call that nausea). 'Poisoned' isn't even like food poisoning, because however unpleasant and prolonged the gastric upset was, I never got that impression of having something in my bloodstream.

I wonder if those who haven't felt as if there was something toxic running right through their system, in a way that's starkly different to ordinary PEM, possibly haven't had it.

I can't think of a way to describe it without using the words 'poison' and 'toxin', but I'd never use them for my normal experience of ME/CFS.

 

[obeat]

For me there is the day to day malaise where you can still manage to do a very limited amount. The poison or toxic sensation completely inhibits activity.

I have experienced it with alcohol intolerance, really bad PEM but also during hot flushes with the menopause which was extremely debilitating.

ETA the poison sensation would precede the onset of a hot flush by 30 to 60 seconds.