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 have met clients with clinical alcohol intolerance due to a genetic defect in the aldehyde dehydrogenase enzyme. They show facial flushing and rapidly become nauseous, faint, headaches etc. The flushing is very obvious to others and they usually never drink again.

I was able to drink alcohol for many years with ME but over the last decade, it started to make me drunk much quicker, interrupted my sleep and had rougher hangovers with pain, fatigue, cognitively less with it (?PEM) over the next day which impacted on my ability to function which is already much lower due to ME. So any of the pleasant effects of alcohol was not worth it. So gave it up and not missed it at all.

I suspect that my "unpleasant symptoms" as voted for in the poll, is more to do with my aging brain and liver. I have noticed a lot of other friends in their 50's giving up due to the deleterious effects of alcohol.

Edited to add - from my training, one of the exclusionary conditions for the diagnosis of ME/CFS was alcohol abuse as this can cause similar symptoms to ME (cognitive, pain, fatigue) and should be ruled out in the diagnostic work-up.
 
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Simon M said:
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.
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That could be a good way of putting it. Maybe what I experienced was not worsening of ME symptoms but an instant hangover, which I guess could itself (like so many things do) make ME symptoms worse? I just bundle everything that didn’t happen to me pre ME as an ME symptom.

It’s been probably close to a decade now so difficult to remember. The longest sober period in my life! (There’s some irony here but that’s another story for another time).
 
A good discussion. Surely there has to be something in that as i don’t really know of another disorder where alcohol makes you feel shocking. I like the taste with food but about an hour later I feel like I’ve downed a few Periactin tablets. If I have more than a tiny amount I feel poisoned for days. This is only a post me/cfs thing as between 17-19 I was a normal Australian drinker.
 
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Drinking alcohol seems to make my OI worse. I also tend to have worse sleep on nights where I’ve had alcohol, especially in the evening.

Sometimes it feels like the effect of the alcohol hits me much quicker than it used to, for instance, after a number of sips versus after a drink.
 
MeSci said:
I'd not heard of these, so looked it up - interesting.
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Trip is a well known brand available in most supermarkets. I couldn’t manage a whole one at first. Now I’ve graduated to the hard stuff - CBD and caffeine Medahuman. It actually makes me “drunk”.

I used to like beer and AF beer, but again can’t bear the taste any more.
 
Since ME/CFS started, I've only drank alcohol a few times. I remember one time in college I drank probably two or three shots, and I became very sick. Not vomiting or nauseous, but just a very lousy, fatigued feeling. Almost immediately after drinking, I curled up in bed instead of socializing. And I distinctly remember someone telling me I looked green.

But I don't think I've had such bad reactions the other few times. Most of the other times were beer, not liquor, though.

Two reasons I don't drink at all now:

1. It doesn't have much of an effect. Maybe a little more relaxed.

2. I don't want to risk my mental health getting worse long term for a few hours of relaxation. I've got significant anxiety. With drugs that make you feel better mentally, I think there's always a chance of a tolerance/adaptation effect long term. That was the case for me with cannabis. Even if one night of drinking only reduced my mood for several months by 0.1%, I need all the mood I can get, so I don't even risk that effect.

Edit: I guess I'll put Other Symptoms since the question seems to be asking if alcohol intolerance has ever happened, which it did that one time. For all I know, it might have been a bad batch of liquor though. Although no one else had that experience from that bottle.
 
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AliceLily said:
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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Funny how people know you have ME/CFS but they give you alcohol as a present.
 
Hitting just the right amount makes some of my symptoms easier to endure, especially lessens pain. At family events for example it's a good way to be able to chat. But that amount is small, going over it is awful, and I feel awful afterward, generally for a few days.

No excessive reaction, but I feel a kind of 'poisoned' feeling, intense malaise basically. I mostly stopped.

One notable thing is when I used to wear a heart monitor, my heart rate during the night would be elevated, up to the 90s.
 
My experience with alcohol was that when I was mild, I got drunk very, very easily - 1 small beer or bottle of cider would do the trick. I liked that, because nights out were much cheaper for me than for others.

At moderate, half a small beer would make me feel like I'd been poisoned, and I'd get the overwhelming urge to retreat from the situation and lay down until the feeling passed. I would describe it similarly to the way Jonathan has been trying to pin down the ME/CFS need to be horizontal sometimes. It would also come with feeling 'stupid' (like my brain couldn't make connections or put together a complex utterance) and a sense of pressure in the head, but not quite a headache.
 
Thank you for asking this question.

Interestingly after years of not drinking and exclusion diets, then resuming drinking again in the noughties - I was fine and could drink with no issues for a short while anyway!

I’ve had various relationships with alcohol depending on how unwell I have been over the just over three decades I’ve been unwell. I have either been fairly ok with a horrible hangover - exacerbating my usual symptoms; feeling like my body had been poisoned pain wise mostly, or experienced an allergic like reaction where I would vomit the entire next day until it felt like the allergen had left my body.

I realised at some point this would be around menstruation so I wonder now if this was possibly connected to MCAS. First time this happened was the first realisation I couldn’t really drink anymore, but because it didn’t happen very frequently and there seemed to be no rhyme or reason that I was aware of at the time, I continued to drink and if that didn’t happen I would often have experiences where I drank no more than usual but it affected me way more in a Kim Basinger blind date kind of way.

I got really sick with MCAS in 2017 and allergic to so many things so I have no intention of trying anything alcoholic again until I’m fixed. The thought of drinking alcohol whilst being so unwell… no thanks!

I wonder if alcohol allergies are MCAS related. When I had the initial reaction to alcohol and became too unwell to work, I was living in a mouldy basement. Perfect conditions to trigger MCAS, although I have a long list of other possible triggers too.
 
Near the beginning of my me/cfs adventure, I was in what was essentially remission. I'd been sick really acutely for about 4 months, then suddenly and spontaneouly "recovered." I could exercise. Or I could go drinking. But the combination was a cause of PEM. I learned to separate alcohol and exercise by a day or two.
I reduced my drinking over a decade as I tried to manage my symptoms. Later I realised I had to stop drinking all together.

The additive effect of alcohol and exercise for me is intriguing. I have wondered if for me, anything vasodilatory can be a cause of PEM.

There was another time I did some cold-weather exercise and then went in a spa immediately afterward, it absolutely blew me up, I see that as similar. There was also a day very early on where I had a couple of beers in the hot sun straight after exercise, and even though I was well enough to do exercise in the hot sun that day, the booze tipped me into PEM.

All these reasons make me suspect a vasomotor explanation is primary in my case of me/cfs. Another way to look at it: my me/cfs may be POTS-dominant.

A more general theory of alcohol ingestion might be that it triggers a protein misfolding system that is already on a knife-edge, so that we get the unfolded protein response.
 
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Murph said:
All these reasons make me feel like a vasomotor explanation is primary in my case of me/cfs.
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It might also explain why I flush with even small amounts of alcohol. The sensation of heat isn't as severe as that I got during menopause, but the areas of skin that go a deep scarlet and feel hot to touch are the same. It's been pretty much a lifelong thing for me, though.
 
An interesting matrix to explore with a survey might be

  • I have POTS symptoms, am alcohol intolerant
  • I have POTS symptoms, am NOT alcohol intolerant
  • I have NO POTS symptoms, am alcohol intolerant
  • I have NO POTS symptoms, am NOT alcohol intolerant
 
Murph said:
An interesting matrix to explore with a survey might be

  • I have POTS symptoms, am alcohol intolerant
  • I have POTS symptoms, am NOT alcohol intolerant
  • I have NO POTS symptoms, am alcohol intolerant
  • I have NO POTS symptoms, am NOT alcohol intolerant
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Good suggestion, but maybe better to ask about orthostatic intolerance or dysautonomia so you don't leave out all of us with orthostatic hypotension etc?
 
The main issue for me is that alcohol causes me to get migraines and it doesn't take very much so I don't drink at all.

Edited to add:

I've had ME/CFS since I was 17 (1983). I don't know if alcohol would have still caused me to get migraines if I didn't have ME/CFS. ME/CFS made my migraine condition much worse and it is also part of my PEM symptoms.

If you were to separate my migraine condition from ME/CFS, which of course you can't, but if you could, I would say my migraines are worse than ME/CFS even though I am severe and bedridden because uncontrolled migraines are a reason I could see for killing myself. ME/CFS at this point isn't.
 
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