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

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

  • No

    Votes: 13 10.2%

  • Worsened 'hangover' effect the next day

    Votes: 38 29.9%

  • The taste became unpleasant

    Votes: 7 5.5%

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

    Votes: 22 17.3%

  • Upset stomach - soon after

    Votes: 12 9.4%

  • Aggravation of ME/CFS symptoms soon after

    Votes: 63 49.6%

  • Pains elsewhere

    Votes: 9 7.1%

  • Other unpleasant symptoms

    Votes: 58 45.7%

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

    Votes: 18 14.2%
  • Total voters
    127
Sometimes I can enjoy a couple of glasses of red wine or a slimline G&T without repercussions, most of the time I cannot because I get headaches and brain fog very quickly and become very miserable.

I tend to have a sixth sense for when I can tolerate a few drinks and when I cannot.

I don't touch higher sugar drinks because I am much more likely to feel the above symptoms.

I cannot drink any alcohol within about two hours of going to sleep or I will have a very restless unpleasant night.

This started roughly around the time I became unwell.

I also have migraines and ?cluster or similar headaches and links have been discuss here
 
Andy said:
Existing threads,
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Thanks Andy.
The majority said yes. I will be interested to see how many for each sort of reason.
The general discussion seems to have stopped 5 years ago but clearly worth a re-read.

Edit: yes, well worth a read, lots of information, but it would be nice to have an option poll to clarify numbers. So far they seem to be all over the shop!
 
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I’m glad this is being discussed.

I last had alcohol at a party about 10 years ago when my ME was mild. Granted I did have quite a few drinks which I could normally tolerate fine, but the next day I could barely walk and the body pain was agony along with the muscle weakness and flu like/toxic type symptoms.

From that day I haven’t touched alcohol as to be honest I feel drunk and poisoned most days anyway so I wouldn’t want to add to this.

There’s got to be a reasonable explanation for this when we fully understand the mechanisms of ME as I drank alcohol for years pre-ME no problem.
 
I gave up drinking alcohol due to my symptoms. I used to drink wine sometimes before I fell ill, sometimes cocktails, all socially. Now even one glass of wine would be a challenge because it makes me feel ill, with symptoms appearing rapidly (not after finishing the drink). It is not so easy to describe but generally feeling really ill or maybe even poisoned is quite close to it. I just feel I am hit by a truck, I also feel nauseous, dizzy. The symptoms are very strong to the point that I find it very hard to concentrate on other things going on (someone talking to me for example), because I'm feeling so awful. I don't feel drunk though (I don't feel any of the "nice" aspects of being tipsy), I just start to feel really awful really quickly.
 
https://www.s4me.info/threads/alcoh...ic-fatigue-syndrome-2023-maciuch-jason.33560/
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There has been an astonishing lack of research into this - one of the few significantly relevant studies is "Alcohol use in chronic fatigue syndrome" (J Psychosom Res 56(2004):203-206) where it was reported that in a study of 114 CFS patients (Fukuda criteria) 2/3rds self-reported a reduction in alcohol use and the most common reasons for this were exacerbations of physical symptoms.

Perhaps also worth quoting this from Bansal (BMC Family Practice (2016) 17:81):
The presence of certain other unusual features may be used to confirm the diagnosis of CFS/ME. These include alcohol intolerance, hypersensitivity to medications, perpetually cold hands and feet and an unusual recurrent sighing pattern of respiration.
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Additional features that may suggest CFS/ME in those with borderline scores include alcohol intolerance which we see in four fifths of our patients. This often commences soon after the onset of the CFS/ME symptoms.
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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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jaded said:
I’m glad this is being discussed.

I last had alcohol at a party about 10 years ago when my ME was mild. Granted I did have quite a few drinks which I could normally tolerate fine, but the next day I could barely walk and the body pain was agony along with the muscle weakness and flu like/toxic type symptoms.

From that day I haven’t touched alcohol as to be honest I feel drunk and poisoned most days anyway so I wouldn’t want to add to this.

There’s got to be a reasonable explanation for this when we fully understand the mechanisms of ME as I drank alcohol for years pre-ME no problem.
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This is very much my experience too, horrendous flulike/toxic-type symptoms and muscle weakness. And beyond that, I even get a bad reaction to alcohol-containing cosmetic items such as deodorants and skin lotions. Just the smell makes me feel 'off'.

Mij said:
No. I don't have any intolerances to food or drink that I'm aware of since becoming ill.

I have an intolerance to coffee if I drink more than 3 cups/week, but I also had this issue when I was healthy.
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I developed intolerance to caffeine. Didn't have intolerances to either alcohol or caffeine before I got ME.

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?
 
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!
 
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