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 9.6%

  • Worsened 'hangover' effect the next day

    Votes: 52 31.3%

  • The taste became unpleasant

    Votes: 8 4.8%

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

    Votes: 27 16.3%

  • Upset stomach - soon after

    Votes: 17 10.2%

  • Aggravation of ME/CFS symptoms soon after

    Votes: 82 49.4%

  • Pains elsewhere

    Votes: 12 7.2%

  • Other unpleasant symptoms

    Votes: 67 40.4%

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

    Votes: 24 14.5%
  • Total voters
    166
I was initially so ill I wasn’t drinking. Then picked up and tried some beer and a couple of times a whisky and it just wasn’t enjoyable any more, very different to pre ME. Made be feel off quite quickly, although difficult to describe exactly how, sort of woozy and not at all right. None of the nice feelings of drinking alcohol I had known for years! But basically making ME things worse I think. Then I got worse and have been severe ever since and trying drinking again hasn’t been top of my list. So I went for the aggravation of ME symptoms and @Sasha options :)


Edit: ah yes, quite like @Wyva describes
I just feel I am hit by a truck, I also feel nauseous, dizzy.
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I do still drink but only occasionally at social events. I’m not too bad if I have one glass but I still have worse PEM than I would have from doing the social event without drinking. I will have a couple offor special events birthday do, Christmas. I’m going to be in PEM for about 5 days after any get togethers involving several people anyway so a day or so longer isn’t massive. Frequency no more than once every couple of months. I only drink champagne or very good rose as those are treats.
I don’t have a hangover although I do get tipsy on one glass, the impact is definitely worse PEM.
 
Feeling poisoned the next day even with moderate quantities. Perhaps it was due to lack of habitutation. Having gotten drunk twice in my life, the experience was enough to make me turn into someone who drinks maybe once a year, a small amount.

Also when drunk the muscles in my face lost tone and it I didn't like how that felt or looked.
 
I haven't drank at all after I got more ill. Earlier I could drink, but just 1-2 beers usually made me very tired, apathetic, nauseous and I tried to drink my second glass as long as I could before I'd had to order a possible third. Just to keep company to friends. I've no idea how it'd affect me now.
 
I start feeling ill within minutes of starting to drink alcohol. Nausea, headache, dizziness, heavy fatigue, generally snappy and feeling dreadful. I also get burning muscles, very like that of ME/CFS muscles that have been worked in the previous day or two. The type of drink's irrelevant.

It's miserable enough that it's possible I've never even managed to exceed the alcohol limit for driving. If it was a drink with a larger volume, like a pint of beer, I wouldn't finish it.

I also get intense flushing from the chest upwards, where I look as if I'm burning up with fever. I've had it since childhood, so it's unlikely to be ME-related, and it doesn't really make me feel ill. It's not the genetic condition some East Asian people have.
 
When I was mild I drank plenty, for years! I think the hangovers were worse, but it was easy to drink because it feels soooooo good. I think it felt better than before (because I felt normal). When I deteriorated I was drinking less due to lack of energy. When I became severe, I stopped because I couldn’t face the idea of a hangover.

Since then I’ve tried sips of alcoholic drinks I used to love, they all taste super concentrated and kind of poisonous. I actually have a mini perfume atomiser with Vodka in (I loved Vodka, White Wines like Pinot Grigio, Cava, Sav Blanc, Sancerre) so I could get a “taste” without the overpowering poisonous effect. I can’t even tolerate more than a glass of a good dealcoholised white wine.

Since becoming more ill, I’ve found a few foods can taste “super concentrated” to the point they become unpleasant.

Luckily someone invented CBD drinks, I enjoy one at parties/gatherings (last one was a funeral wake) and the mild effect is like a drink, I can be less stiff and “hanging on to the table/seat/conversation by my fingernails” and a bit more relaxed and giggle!
 
EzzieD said:
ETA: Interestingly, a doctor I saw a while back said my blood tests showed something odd to do with liver function - she remarked she had only seen that in alcoholics, so didn't know what to make of it with me, as she knew I don't drink. If this result happens in people with ME, I wonder what the mechanism might be behind that?
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Were your liver enzymes elevated? This can be a result from many causes re non-alcoholic drinkers. Thyroid, metabolic syndrome, et I've had test results that showed my bilirubin was elevated from unknown cause.
 
I checked Worsened 'hangover' effect the next day + Upset stomach - soon after + Aggravation of ME/CFS symptoms soon after + Other unpleasant symptoms.

I can't drink more than approx 6 cl of wine nowadays. I still enjoy the taste, though.

The first time it happened to me I was travelling solo in a south western European country, having dinner and a small glass of wine at a restaurant I hadn't visited before. I genuinely thought I might have been poisoned, but managed with very great difficulty to get back to my hotel. The symptoms eased a bit after a few hours and I fell asleep, I never called an ambulance.

I get a very strong reaction after about 15 minutes or so, as if I've been poisoned. Extremely nauseous, super dizzy, vomiting, spaced out/lightheaded, difficulty thinking, balance issues, eyes affected too (difficulty focusing and processing), muscle weakness and shakiness, feeling as if I have an immense hangover (also very soon after, like half an hour after drinking).

I've experienced all sorts of stomach issues while travelling before, like "Delhi belly" and "Pharaoh's Revenge" and all those things. But my reaction to alcohol was something completely different.

The intense poisoned feeling lasts a few hours, and the "hangover" effect continues to the next day with added PEM beginning after 24-48 hours. If I remember correctly, it's been many years now. I didn't realize it was alcohol intolerance, until the second time it happened.

I never had a hangover before ME.
 
Mij said:
Were your liver enzymes elevated? This can be a result from many causes re non-alcoholic drinkers. Thyroid, metabolic syndrome, et I've had test results that showed my bilirubin was elevated from unknown cause.
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It showed an abnormally high GGT. Bilirubin and everything else on the test (ALT, ALP, Albumin, Total Protein, Globulin) were all within normal limits. I don't know what any of it means; from reading a bit it sounds like GGT is very much to do with alcoholism, but may also be to do with viral hepatitis, and I've never had that either. It is a mystery.
 
I've had intolerance to alcohol ever since developing ME/CFS. Prior to getting ill I could drink moderately without problems.

My intolerance means that even after drinking half a glass of wine I will develop large, red, itchy hives the following day. These are usually on the chest or stomach and resolve within 24 hours.

I have had ME for more than twenty years and stopped drinking alcohol altogether years ago because of these symptoms so cannot confirm that I still have this intolerance, though I assume that I do.
 
I have never particularly enjoyed the taste of alcohol, and have always reacted badly to too much alcohol. The last time I over indulged was over forty years ago when I ended up vomiting for some sixteen hours such that my throat was bleeding. But I could drink moderately prior to ME without any issues. Interestingly my family tree over some two hundred years indicates a problematic relationship with alcohol for alternative generations, including some dying of such as liver failure, in contrast the intervening generations being tea-total. (By this pattern I am the teetotal generation.)

So by the time I developed ME I only ever drank very small amounts and only in social situations. Post onset the first couple of times I had half a glass of red wine I came out in a rash, then a glass of wine or some shandy would always be followed by PEM the next day, but it was hard to know how much was down to the wine and how much the exertion of the social situation. A bottle of wheat beer on one occasion was followed by a migraine, but was this a gluten issue as my gluten intolerance is consistent unlike any alcohol intolerance?

So I say I am alcohol intolerant, and now only ever drink a couple of mouthfuls of champagne during toasts at the rare family events I attend, but given the variability of my response to alcohol I can not be certain that this is true.
 
I ticked the 'just put off - don't feel like having it' box.

I haven't drunk much alcohol since I became ill. I don't think it makes me more ill, but I haven't really monitored that well. I will have to experiment!

Bansal quoted upthread said:
In our experience nearly all patients with CFS have reduced their intake of alcohol and I have not seen a single patient who had increased his/her alcohol intake. Moreover, tolerance of 4 units or more of alcohol in a single sitting is unusual and encourages us to revaluate the diagnosis. In this regard fewer than 20 % our patients continue regular alcohol ingestion although even here the amount consumed has been decreased.
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In a 'correlation is not causation' consideration, at least for those people with ME/CFS who don't clearly have a bad reaction to alcohol, I think it is worth mentioning that for social drinkers, the opportunities to have a drink are much reduced for many people with ME/CFS. Sitting alone at home with a drink feels perilously close to drowning one's sorrows, and that rather takes the shine off it. There's also the cost - when you don't have much of an income, alcohol is not a priority expense. And, as the years have gone on and I've put on some weight, the pleasure versus the empty calories rarely seems worth it. And I sometimes get asthma from the sulphites in wine...

I like beer and will have a glass now and then, even on my own, for the taste. Although that is usually at night, so perhaps if it caused symptoms, I wouldn't notice so much, and it's not a lot of alcohol. And occasionally some wine at social events, and there I would have attributed the PEM that follows to the various exertions involved.
 
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I’ve always been struck by how this was a strange and pretty common symptom. It doesn’t seem important in its own right, but maybe it tells us something important.

my answer of “other unpleasant symptoms”, isn’t very informative.

What I actually experience is a hangover coming on pretty fast, half an hour or so. Not the next day.

Though I do have a safe threshold of maybe a quarter of a glass. And I only feel tempted on a good day. That’s a 1970s/80s size wine glass, 6 to a bottle.
 
I used to drink a lot, and carried on when I had ME, until I couldn't any more. I just have a small glass of wine each evening now. Can't drink beer any more because of gluten. I suppose I could buy gluten-free beer but I'm happy to stick to the (made from kit, so very cheap!) wine.
 
I've had ME/CFS a long time and although I had drunk before I had it I was young so who knows what some experiences 'would have been' if I hadn't had it and aging etc. although I do have family members and peers to compare certain things to

Having said that the starkest thing of all is the different 'types' of alcohol. e.g. I've never been able to even sip/toast champagne as I get immediately slurring words drunk, and wine isn't much better from much more - it is weird and so fast it is more like an allergy even though no allergy symptoms. Game over, no point. I have been able to eg drink some spirits particularly with loads of mixer or maybe alcopop type things. I'm near certain this wasn't a practice thing that made this vast difference.

There is a vast difference for me however between when my illness, or any other illness is 'live' (I'm on a downhill vs it's 'constant') as to whether I would touch it at all, which can mean pretty much years at a time sometimes. I guess much of that is that at that point I'm hoping it's just a 'relapse' but also I'd find it would just make me go to sleep and I wouldn't fancy it. And if I did then it wouldn't have the same effect just increase the sleepiness etc. So throughout my life I've had huge swathes of time when I just wouldn't have touched it because innately it didn't make sense. Like when I had glandular fever for ages. Or if I had another whatever illness.

I did have days where I did 'big nights out' (still heeding these rules on type of alcohol) and my hangovers were couldn't move, banging head, rheumatic, aches absolutely everywhere (although of course I was also probably doing things as I didn't know about PEM for most of this) - and I know everyone gets them but mine were markedly different to others and lasted days, often swollen glands too. And in fact I'd 'get properly ill' a lot from nights out, as others would perceive it ie what seemed to be fully blown eg tonsilitis.

On the other hand if I'm really particular about the what and amount etc then when it's not 'live' ME-wise and there's nothing else eg another illness a few well diluted spirits I might be OK, heck it might even come with benefits like relax aches a bit at the time. Tip that invisible line and the next day I will get in particular very painful rheumatic aches all up arms from wrists and ankles and feeling everywhere in joints and muscles as well as it exacerbating the 'bad day' ME stuff re: bed-bound and communication etc. There might be other things I'm forgetting because you know, ME symptoms as they are anyway (migraines etc) but that's the weird distinctive one.

I think, but I didn't for example have whilst I was working even thought about having one on a weekday because I'd invariably have been collapsing into bed when I got home with exhaustion anyway, but also the mission of trying to get a broken body to somehow get up and into work when logically it wasn't in a fit state anyway didn't need anything else adding into the mix. But at the weekend certainly for one night I'd often go very locally to a pub or someone's house and sit down and have a few noting all these limits, normally starting later than most having had a big 'disco nap' before. I might have felt rotten sometimes after but I guess by then I had an intuitive sense of limits and 'built-in' that I'd be in bed feeling rotten and having to rest due to ME exhaustion anyway, and recovery for the week - I'd never for years have been able to do anything real getting out of the house doing a trip etc at the weekends, only if I had a week or more of annual leave.
 
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I voted 'worsened hangover effect'. From memory, I feel more dehydrated.

I was given a bottle of wine at Christmas last year and it is still sitting in the fridge over three quarters fill. I've only had 3-4 sips with a meal about 4 times and then lost all interest.
 
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