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

[bobbler]

Worsened hangovers at 19 were one of the first signs along with insomnia and DPDR that something wasn't right with me. When I got full ME/CFS seven years later the hangovers became even worse and I noticed feeling drunker with less alcohol although I was trying to cut down a lot on drinking at the time so could have been reduced tolerance.

I suspect my body doesn't metabolise alcohol very well. People would sometimes say I smelled like vodka when I'd only had 3 pints.

Interesting- I had an incredibly rude and unpleasant by ‘people I’ve seen over a lifetime now’ standards tutor at uni once so out it down to how vile she was (every time it was some made up reason to say she hated me that seemed to be for no reason to do with me)

One time I was trying to present my work and she just waved her hands and said I ‘stunk’ of booze. She was so nasty I didn’t have words but also knew replying to say I didn’t know why would have just extended it. I did drink a bit then but not the day before seeing her and not in large quantities any days near seeing her.

I went away puzzled and self-conscious and eventually assumed as I worked in a bar until 6months before (plus did do a few shifts at the start of that year but health wise realised I no longer could) so popped in to see old colleagues that maybe my coat had dipped in something spilt on the bar or from being hung up there that I rarely dry cleaned but then its weird no one else ever said that to me.

 

[NelliePledge]

I was given a bottle of Villa Maria Pinot Noir for Christmas by someone who doesn't know I am intolerant. It is a red wine. Funny thing is, because I don't drink I don't know how good the wine is or whether Pinot Noir is normally a red wine so I may not even of had to say red wine.

It is sitting at the bottom of a cupboard. The only way I am going to be able to drink it is to have about 5 or 6 sips every other night or more with a meal. I have a feeling from memory that I am even more intolerant to red wine.

That’s a decent wine. Pinot noir is a lighter red. Maybe regift it. You could use it to make a casserole if you eat chicken or beef.

 

[neophyte32]

Posts moved from: Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

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Paolo's meta-analysis also found glutamatergic synapses to be significant

It's funny because alcohol, at the beginning of my mild MECFS, relieved my fatigue and panic attacks for two or three days. I felt much better. Then, in 2024, I would panic the next day... and then I became intolerant with bizarre side effects, even tachycardia. I haven't drunk any alcohol since December 2024 and the onset of severe MECFS.

 

[MeSci]

I had no problems with alcohol for several years after getting ME (I used to drink a lot), but eventually became intolerant, and can only manage one small glass of wine most days.

 

[Kitty]

I doubt I've ever managed to drink enough to be over the driving limit, and even that makes me feel terrible.

It's equivalent to banging my head against a wall—no part of it is enjoyable—so I gave it up decades ago.

 

[V.R.T.]

It's funny because alcohol, at the beginning of my mild MECFS, relieved my fatigue and panic attacks for two or three days. I felt much better. Then, in 2024, I would panic the next day... and then I became intolerant with bizarre side effects, even tachycardia. I haven't drunk any alcohol since December 2024 and the onset of severe MECFS.

Ever since my (probable) prodromal onset at 19, I found that alcohol relieved my DPDR/panic symptoms during social events/gigs etc but they became much worse the next day. The prodromal symptoms were labelled depression and anxiety and antidepressants didn't help so I used alcohol to mask them.

Unfortunately alcoholism runs in my family so that went about as well as you'd expect..

The hangovers were so bad if I wasn't addicted I would have quit or cut down to almost nothing for sure. Bizarre is the operative word but also terrifying. After my definite onset of MECFS, my hangovers were even worse, and alcohol tolerance went down significantly, although I was alternatively trying to quit or moderate in those years so that could be a factor. I also noticed I would feel shaky and derealised and weird in those years as the first drink was taking effect.

Sober since a couple months before my decline to severe started, thankfully. Sadly a lot of people report exercise helps them stay sober, and we all know how that turned out!

 

[neophyte32]

Ever since my (probable) prodromal onset at 19, I found that alcohol relieved my DPDR/panic symptoms during social events/gigs etc but they became much worse the next day. The prodromal symptoms were labelled depression and anxiety and antidepressants didn't help so I used alcohol to mask them.

Unfortunately alcoholism runs in my family so that went about as well as you'd expect..

The hangovers were so bad if I wasn't addicted I would have quit or cut down to almost nothing for sure. Bizarre is the operative word but also terrifying. After my definite onset of MECFS, my hangovers were even worse, and alcohol tolerance went down significantly, although I was alternatively trying to quit or moderate in those years so that could be a factor. I also noticed I would feel shaky and derealised and weird in those years as the first drink was taking effect.

Sober since a couple months before my decline to severe started, thankfully. Sadly a lot of people report exercise helps them stay sober, and we all know how that turned out!

I understand what you're writing; my parents drank a lot of alcohol... I drank way too much from age 16 to 40 and did a lot of sports because I have an obsessive and addictive personality.

Since I can't really pinpoint when my illness actually started (either January 2022 or April 2023), I can't really analyze the situations and my condition. I know that from January 2022 to April 2023 I did a lot of sports...

What triggered my MECFS (or the final straw) was two instances of abuse: January 2022 (prodromal phase) alcohol and tramadol (dependent from 2019 to 2022) and April 2023 during a run with two days of mixing alcohol, tramadol, and... cocaine (I've taken it six times in my life). The day after overindulging, during my run I felt my brain changing and I had a panic attack two hours later.

Only alcohol could calm them down after that, until 2024. I'm not proud of my journey, I'm ashamed.

In short, alcohol calmed my system but also probably helped trigger my MECFS (Method of Controlled Eating Disorders). I've also had a lot of illnesses (Lyme disease, COVID four times, seven bouts of bacterial tonsillitis in 2023...).

 

[V.R.T.]

I understand what you're writing; my parents drank a lot of alcohol... I drank way too much from age 16 to 40 and did a lot of sports because I have an obsessive and addictive personality.

Since I can't really pinpoint when my illness actually started (either January 2022 or April 2023), I can't really analyze the situations and my condition. I know that from January 2022 to April 2023 I did a lot of sports...

What triggered my MECFS (or the final straw) was two instances of abuse: January 2022 (prodromal phase) alcohol and tramadol (dependent from 2019 to 2022) and April 2023 during a run with two days of mixing alcohol, tramadol, and... cocaine (I've taken it six times in my life). The day after overindulging, during my run I felt my brain changing and I had a panic attack two hours later.

Only alcohol could calm them down after that, until 2024. I'm not proud of my journey, I'm ashamed.

In short, alcohol calmed my system but also probably helped trigger my MECFS (Method of Controlled Eating Disorders). I've also had a lot of illnesses (Lyme disease, COVID four times, seven bouts of bacterial tonsillitis in 2023...).

That sounds very hard to go through and I empathise with much of it (apart from the being sporty!). I can't know what part my drinking played in triggering or perpetuating my MECFS but it certainly didnt help!

It's very hard to deal with the shame that comes with addiction, I'm sorry you struggle with that too.

 

[Kitty]

'Alcohol intolerance' seems to include quite a wide range of responses. In my case it's burning muscle pain and churning nausea that starts within minutes of consuming alcohol. Both manifest before any of the pleasant effects people describe (I'm not sure I've ever managed to drink enough to feel them).

If everyone felt that bad that quickly, humanity would probably never have bothered producing alcoholic drinks.

 

[MeSci]

That sounds very hard to go through and I empathise with much of it (apart from the being sporty!). I can't know what part my drinking played in triggering or perpetuating my MECFS but it certainly didnt help!

It's very hard to deal with the shame that comes with addiction, I'm sorry you struggle with that too.

I don't think there is any reason to be ashamed of having, or having had, addiction.

I was addicted to injuring myself as a child and young adult - with sharp objects. I gave up due to vanity - the scars were becoming less able to disappear.

Then I became addicted to cigarettes. That took three attempts to give up, and I only tried due to asthma.

Then I was addicted to amphetamine. Again, I think it took 3 attempts, but I managed it, although I lost my job (unfairly, I think, as I'd kicked the habit and my record was improving - it had been excellent before).

Giving up is extremely difficult, and anyone who's done it should feel good about it.

 

[V.R.T.]

Giving up is extremely difficult, and anyone who's done it should feel good about it.

Absolutely! Sorry to hear about your struggles, glad you were able to overcome them.

 

[Axel]

The year things got really bad, a single glass of wine was enough to send me to bed for several hours after just fifteen minutes. The sort of reaction you’d more expect from a virus – A need to sleep as if I were being sucked into a vortex. When I woke up, I felt the need to go home and rest as if I were facing months of convalescence. Nothing like a normal (good or bad) reaction to alcohol.

Come to think of it, I remember feeling drunk that year after eating cakes.

Now I can drink from time to time, but it tires me out immediately and, at best, causes a vague, analgesic, excitement that has nothing to do with the relaxation and warmth of the past, apart from the fact that the taste no longer seems very rich to me. (But that applies to almost all foods). Pastries and sugar still give me a bit of a buzz.

 

[leokitten]

Posts moved from: Could Phospholipid Dysregulation Contribute to ME/CFS?

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What causes sudden alcohol intolerance like what happens to so many of us after ME is triggered, when the week before getting ME we could drink alcohol no problem? In my case the intolerance manifested itself as even just a couple sips of any alcoholic beverage immediately gave me powerful symptoms as if I drank a gallon, I was so nauseated and sick, sudden major hangover, and dizzy and really drunk from almost nothing

Just want to be more descriptive on the alcohol intolerance anecdote, that only lasted the first couple years or so of ME and slowly but eventually improved. But the ME didn't get better only got worse. Very very weird I don't know if other ppl had this happen the same way?

 

[Chandelier]

Just want to be more descriptive on the alcohol intolerance anecdote, that only lasted the first couple years or so of ME and slowly but eventually improved.

The psychobbabelist Raelan Agle tells a somewhat similar experience here:
First 1-2 years bedridden with ME/CFS, she couldn’t drink alcohol.
However, after those two years, alcohol became her "superpower".
Maybe harder hangover afterwards, but while drinking, she could party with friends as if she had recovered.

AI Subtitles:

[00:00] So when I was really sick, my first, I don't know, year or two years with this illness,
[00:05] when I could barely get out of bed, alcohol was out of the question.
[00:09] So I wasn't drinking at all.
[00:10] I don't think my body could have tolerated it, and I don't think I had much of a desire for it.
[00:15] But when I started to feel even a little bit better, maybe closer towards the end of that second year,
[00:21] I remember there was one occasion where I decided I was going to have some wine,
[00:25] and I had too much wine and I got a hangover from drinking that lasted almost two full weeks.
[00:34] So that really kept me from drinking for quite a while after that as well. So my hangovers were
[00:41] intense. But I did notice that while I was drinking, I was feeling much better. I had way
[00:47] more energy and I could do so many things that I couldn't normally do. It was like virtually all of
[00:53] symptoms disappeared. But that two week hangover left me scared. But eventually, as time went on,
[00:59] and my health continued to improve, and I started traveling, and I was hanging around with a lot of
[01:04] people where social drinking was very much the norm. And my not drinking was making me feel like
[01:13] I was outside of what was going on. So slowly, I started drinking more when I was out with other
[01:18] people and alcohol became like my superpower.
[01:22] It was crazy how good I felt once I was consuming alcohol.
[01:27] And now that I've started sharing my health journey publicly,
[01:30] because back then I actually didn't talk about it much.
[01:33] And most people in my life weren even aware that I had any kind of health issues And I think if any of them saw any of these videos now they think how were you sick Like I would sit out sometimes drinking with you until 3am How is that even possible It really was like my superpower And I still got
[01:51] hangovers. They didn't last two weeks. Thankfully, they were probably worse than
[01:56] a healthy person's hangover. But it kept me afloat. It allowed me to fit in and
[02:03] socialize and have friends and have energy to do things that I didn't normally do. But of course,
[02:09] alcohol consumption is very bad for chronic illness recovery. I think it's very bad for
[02:13] everybody. It's poison. So we're drinking poison, dumping it into a body that's already struggling.
[02:21] And then I've come to appreciate because I'm hypoglycemic. So I've read every single book,
[02:26] I think, on hypoglycemia that exists. And alcohol converts to glucose in our body faster than straight
[02:32] sugar even does. So it is really hard on our bodies in so many different ways. So I'm certainly
[02:40] not recommending that anyone who's struggling use alcohol as a way to feel normal. I'm just saying
[02:47] that that was my experience. So I just love to get the conversation going and I'd love to start
[02:52] getting some more information out there on this since there doesn't seem to be much. So please,
[02:57] if you have any experience with this or any thoughts or any insights, I'd love for you to
[03:01] share it in the comments so we can start to learn about this and understand this. Incidentally, when
[03:06] I finally did recover, I cut out alcohol almost completely. It was vital that I did. I was getting
[03:12] nowhere when I was consuming alcohol regularly. When I recovered, I'd cut it out often for months
[03:17] at a time. Now that I'm feeling strong and healthy and symptom-free, I do still consume alcohol on
[03:24] occasion.

Alternative interpretation. She’s trying to cover her back with a nice story for the scam she’s doing:

[01:33] And most people in my life weren even aware that I had any kind of health issues And I think if any of them saw any of these videos now they think how were you sick Like I would sit out sometimes drinking with you until 3am How is that even possible It really was like my superpower

 

[neophyte32]

Personal anecdote: alcohol masked my symptoms too... sometimes even the next day when I felt fine and pretty good. I hadn't had a drop for 16 months, since my severe illness and bed rest. But strangely, it acted like a benzodiazepine on my central nervous system. But sometimes I would also have panic attacks the next day, with my heart and nervous system in hypervigilance... I would stay in bed, terrified.

 

[V.R.T.]

strangely, it acted like a benzodiazepine on my central nervous system. But sometimes I would also have panic attacks the next day, with my heart and nervous system in hypervigilance... I would stay in bed, terrified.

This describes my experience with alcohol since prodromal onset. It was calming in the moment and moderate amounts allowed me to feel somewhat 'normal' in crowds or social situations. But the next day was hell.

Interestingly after definite onset I got more symptoms while drinking as opposed to next day. Partner got horrible alcohol intolerance from her ME onset, and she had never had more than a normal hangover before.

 

[neophyte32]

This describes my experience with alcohol since prodromal onset. It was calming in the moment and moderate amounts allowed me to feel somewhat 'normal' in crowds or social situations. But the next day was hell.

Interestingly after definite onset I got more symptoms while drinking as opposed to next day. Partner got horrible alcohol intolerance from her ME onset, and she had never had more than a normal hangover before.

I was still partying for two days with friends, and in September 2024, I could drink alcohol the next day and I was invincible... two days in a row, I was like normal, not even too drunk. However, the first night I got drunk very quickly, even though I've always had a high alcohol tolerance. But before the MECFS, I had a bad habit: alcohol, the next morning a run, the alcohol in the evening. My wife and friends are always impressed by my endurance and resilience in going for a run the next day with a hangover.
My weekends were like that for 15 years... I'm ashamed of it.

 

[V.R.T.]

I was still partying for two days with friends, and in September 2024, I could drink alcohol the next day and I was invincible... two days in a row, I was like normal, not even too drunk. However, the first night I got drunk very quickly, even though I've always had a high alcohol tolerance. But before the MECFS, I had a bad habit: alcohol, the next morning a run, the alcohol in the evening. My weekends were like that for 15 years... I'm ashamed of it.

My tolerance went down massively when I definitely got MECFS at 26 as well. Although i was also dieting and trying to cut down about then. sadly my urge to drink the pub dry didn't go down at the same time...

When I had my prodromal onset at 19, I went from being someone who cracked a can of coke and went into town the next morning with a bad hangover to someone who was feeling dreadful in bed when hungover, and missing out on stuff they really wanted to do.

But to be fair, I should have quit drinking then cos I was already an absolute mess!

 

[ChronicallyOverIt]

My tolerance went down massively when I definitely got MECFS at 26 as well. Although i was also dieting and trying to cut down about then. sadly my urge to drink the pub dry didn't go down at the same time...

When I had my prodromal onset at 19, I went from being someone who cracked a can of coke and went into town the next morning with a bad hangover to someone who was feeling dreadful in bed when hungover, and missing out on stuff they really wanted to do.

But to be fair, I should have quit drinking then cos I was already an absolute mess!

I too had I would say had disproportionate hangovers compared to my peers, sometimes the hangover lasting days when I was 20-25. Oddly my peers would only be hungover for a day. I would be stuck in bed for 2-3. I got sick sick at 25. I didn’t drink after that though cause it made me feel awful even during the drinking. Eye irritation and just feeling sick over all.

I too think I had a prodrome, I was legitimately dead exhausted after work days my peers handled fine. I’d have to nap after work everyday. I still during this time was able to work out in the evenings and have no ill effect.