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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Alcohol Tolerance Poll

The Alcohol Tolerance Poll

  • My tolerance of alcohol shifted after I got ME/CFS

    Votes: 195 45.5%
  • My tolerance of alcohol did not shift after I got ME/CFS

    Votes: 41 9.6%
  • After ME/CFS I don't do well with even small amounts of alcohol

    Votes: 267 62.2%
  • After ME/CFS I do OK with small amounts of alcohol but can't tolerate moderate to large amounts

    Votes: 71 16.6%
  • LOL I can actually drink more alcohol now without it effecting me!

    Votes: 21 4.9%

  • Total voters
    429

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
There are a lot of recipes online for homemade tonic water. Looks a little complicated, but might be a fun project for the scientifically minded.

I don't know whether acidity contributes, but, like a lot of others here, sometimes alcohol makes me feel like I've been poisoned and my body just wants rid of it. To me that implies a problem with metabolizing the alcohol, but it could well be that sulphates and other impurities are causing a separate reaction, and maybe acidity is causing a different problem again. Reading more of the articles and threads on here, I'm starting to realise that with ME there's usually more than one thing going on at a time.

Yes, I did a bit of searching, and got as far as buying some fizzy water, but couldn't find the flavourings. I tried various online sources and my local homebrew shop - no good. So tried various other things to go with the gin, and have settled for orange juice. During my searches I was very puzzled to find that it seemed impossible to buy simple, unsweetened, organic raspberry juice, which I thought might be a good candidate mixer for gin.

Wild raspberries grow very well round here, so I may start encouraging them again - in containers, as they spread like crazy in the ground!
 

lookinglass

Senior Member
Messages
115
Location
Tenerife
Only just come across this thread. I have always had alcohol intolerance. Hate it. Wine, every kind, smells like petrol and tastes like battery acid. Whisky and all other hard liquor made me vomit, gave me migraines and pains down my left arm. No change when I got M.E. 8 years ago.
 

SB_1108

Senior Member
Messages
315
There was a study being done recently about alcohol intolerance in ME/CFS. Does anyone remember who was conducting the study? The results should be coming out soon I believe?
 
Messages
33
Location
United States
It is a bit more complicated than that, but there is no need to get into deeper explanations here. The important point is that if you wish to drink then good quality vodka is the least damaging drink on offer (for the equivalent amount of ethanol, of course). The worst drink is probably apple based non distilled stuff like cider and applejack, etc, they have a well earned reputation for vicious hangovers.

This is really interesting to me too because, since I have had CFS/ME I have been able to drink very small amounts of vodka once in a while. I found this out after a LOT of trial and a LOT more error.

AND, hard cider is MURDER. Before even finishing a bottle of hard cider, my body starts to lock up, I get a terrible headache and I feel like I am about to come down with the worst flu imaginable.

Thank you, @Sean for explaining why this is! P-Kat:cat:
 

osisposis

Senior Member
Messages
389
lols, how do you vote? sence I got ill I cant tolerate any alcohol at all, and cant even tolerate being in a room with people drinking, the smell itself use to cause hypersensitivity reactions, still does but not as obvious as it was when I first got ill and for many years, last time I was tempted by a froend to try one drink , I started halausenating (sorry spelling) and about caused a reck because I grabed the stearing whell because I thought he was driving in oncoming traffic, needless to say no one has tried to get me to drink sence. does anyone else have MCS/REACTIONS just from the smell? I also have anaphylaxis and anaphylatoid reactions and got sick from exposure in a water damaged high moisture moldy home, I am highly allergic to mold mixes and have anaphylaxis to mold extracts and very reactive to voc's ,
 
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Thinktank

Senior Member
Messages
1,640
Location
Europe
I now tolerate alcohol better than a few years ago, but nowhere as good as pre-lyme/ME.
Funny thing though is that alcohol doesn't give me a buzz anymore, it only intensifies the brainfog / drunk feeling that i already live with 24/7.
 

osisposis

Senior Member
Messages
389
visa versa, why some of us don't tolerate alcohol, may be some answers right here

Cross-talk between pulmonary injury, oxidant stress, and gap junctional communication.


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2933150/


IN OTHER WORDS, reactive airways and beyond.

Cell to cell communication in response to mechanical stress via bilateral release of ATP and UTP in polarized epithelia.

https://www.ncbi.nlm.nih.gov/pubmed/10995440

Purinergic signalling and immune cells.

https://www.ncbi.nlm.nih.gov/pubmed/25352330

Purinergic Signal. 2016 Jun;12(2):235-46. doi: 10.1007/s11302-016-9497-4. Epub 2016 Feb 24.
P2X7 receptors induce degranulation in human mast cells.
Mast cells play important roles in host defence against pathogens, as well as being a key effector cell in diseases with an allergic basis such as asthma and an increasing list of other chronic inflammatory conditions. Mast cells initiate immune responses through the release of newly synthesised eicosanoids and the secretion of pre-formed mediators such as histamine which they store in specialised granules. Calcium plays a key role in regulating both the synthesis and secretion of mast-cell-derived mediators, with influx across the membrane, in particular, being necessary for degranulation. This raises the possibility that calcium influx through P2X receptors may lead to antigen-independent secretion of histamine and other granule-derived mediators from human mast cells. Here we show that activation of P2X7 receptors with both ATP and BzATP induces robust calcium rises in human mast cells and triggers their degranulation; both effects are blocked by the P2X7 antagonist AZ11645373, or the removal of calcium from the extracellular medium. Activation of P2X1 receptors with αβmeATP also induces calcium influx in human mast cells, which is significantly reduced by both PPADS and NF 449. P2X1 receptor activation, however, does not trigger degranulation. The results indicate that P2X7 receptors may play a significant role in contributing to the unwanted activation of mast cells in chronic inflammatory conditions where extracellular ATP levels are elevated.
ATP; Degranulation; Mast cells; P2X

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4854833/
 

roller

wiggle jiggle
Messages
775
i tried ethanol (100% alcohol, they say) from the pharmacy.
about 120ml before "bedtime".
3 times so far, up to 7 days apart.

i had quite some hopes, but nothing.

i feel drunk for 2 or 3 days after, particularly when walking.
nausea like motion sickness.
 
Messages
236
Location
Medford NJ
I stick to vodka. Wine I can tolerate one glass but that's about it.
A few years alcohol repelled me did not drink at all. Feeling much better able to tolerate a drink. Vodka has no after effects for me and sometimes will get rid of fibro pain. I never drink more than 2 drinks anymore

For a few years I did not drink at all. have recovered to some extent. I don't push it, but I am more active now and sometimes get fibromyalgia pain at night. I have tramadol but if I take it at night it keeps me awake so I have a drink.
Once a few years ago I was at a play in center city. I forgot my pain pills. Pain was bad could not enjoy the play. At intermission had a shot of vodka at the bar. Pain gone able to watch play.
 

helperofearth123

Senior Member
Messages
202
I had a bad crash after playing football for 10 minutes Saturday. The next day (yesterday) I felt like I had been pummeled all over my body. I drank some beer and found it made me feel okish again, I could listen to music from my bed and generally be in an upbeat mood. I drank 3 pints and in the end the day was not too bad.

The next day (today) I had recovered mostly from the PEM from the football but found it hard not to have a drink. I drank 4 beers.

Its such a dismal situation, i hate just wasting my life in bed, if I slowly consume alcohol I feel positive and cheerful and have a bit more energy. It turns a crap day into a fun day. Its a bit worrying as i'm finding it very addictive. Even though I dont usually drink, once you get used to having that relief its hard to take it away. I'll try and stay away from it tomorrow but I can't make any promises. I mean, it genuinely improves my quality of life. But long term i know its bad to rely on it.

I would take pain killers instead if I had them but I don't have any. I don't know what to do instead. Its drink and feel alright or lie in bed feeling ill.

For the first few years of illness I was completely intolerant to alchocohol. I didnt drink anything for 5 years as a result. But then I became tolerant to it again and finding it hard to cope without it. Not a good situation.
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
I had a bad crash after playing football for 10 minutes Saturday. The next day (yesterday) I felt like I had been pummeled all over my body. I drank some beer and found it made me feel okish again, I could listen to music from my bed and generally be in an upbeat mood. I drank 3 pints and in the end the day was not too bad.

The next day (today) I had recovered mostly from the PEM from the football but found it hard not to have a drink. I drank 4 beers.

Its such a dismal situation, i hate just wasting my life in bed, if I slowly consume alcohol I feel positive and cheerful and have a bit more energy. It turns a crap day into a fun day. Its a bit worrying as i'm finding it very addictive. Even though I dont usually drink, once you get used to having that relief its hard to take it away. I'll try and stay away from it tomorrow but I can't make any promises. I mean, it genuinely improves my quality of life. But long term i know its bad to rely on it.

I would take pain killers instead if I had them but I don't have any. I don't know what to do instead. Its drink and feel alright or lie in bed feeling ill.

For the first few years of illness I was completely intolerant to alchocohol. I didnt drink anything for 5 years as a result. But then I became tolerant to it again and finding it hard to cope without it. Not a good situation.

Hey Matthew, i`m in the same boat.

I strongly need to warn you about drinking more than 1-2 days a week though, you might not end up an alcoholic (as that seems to be of somewhat genetic nature), but you will inevitably end up standing at the crossroads realizing you are drinking too much, with all the guilt and self loathing that contains. Try finding something else most days in the week, that lightens you up, and keep the alcohol for the weekends :) Using ME/CFS as an "excuse" is very dangerous, iv`e been there some months after a breakup, and I saw a lot of lost souls in the pubs.. Everyone had some excuse..
 

NelliePledge

Senior Member
Messages
807
I only normally have one small glass of wine (Provence rose by choice) if socialising with friends/family I go for weeks without having a drink these days. But I made the mistake on Saturday of 3 glasses and had a terrible night slept only in the early hours after my heart stopped racing. I will not be doing that again

I wouldn't recommend vodka as "better" than other types of alcohol. I've known two people who had drinking issues and both used vodka as their drug of choice. The fact that you might have fewer negative effects for the amount of alcohol isn't a good thing if it means you consume more. Alcohol is a terrible drug if it had only just been invented it would be a Class A due to the level of harm. I've seen my parent struggle with the physical addiction and die of the ravages of alcoholic liver disease.
 

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
Hey Matthew, i`m in the same boat.

I strongly need to warn you about drinking more than 1-2 days a week though, you might not end up an alcoholic (as that seems to be of somewhat genetic nature), but you will inevitably end up standing at the crossroads realizing you are drinking too much, with all the guilt and self loathing that contains. Try finding something else most days in the week, that lightens you up, and keep the alcohol for the weekends :) Using ME/CFS as an "excuse" is very dangerous, iv`e been there some months after a breakup, and I saw a lot of lost souls in the pubs.. Everyone had some excuse..

I say whatever makes you feel better with CFS take it.
It's a brutal enough illness without skipping factors that improve you.
Granted you need to be able to control your intake.
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
I say whatever makes you feel better with CFS take it.
It's a brutal enough illness without skipping factors that improve you.
Granted you need to be able to control your intake.

I`m talking about alcohol abuse, which it is after a certain treshold is reached.
 

helperofearth123

Senior Member
Messages
202
Thanks for the advice. As frustrating as it is to have something that eases the CFS right there available I don't think the side effects which would build up would be worth it so I'll keep it to a minimum. Not feeling too bad today anyway actually luckily, though too tired to go anywhere.
 

Basilico

Florida
Messages
948
My husband is a professional distiller (and lately has gotten into home brewing wine/beer/mead). When he's distilling, he applies a very conservative cut at the beginning to remove any traces of methanol. When he's fermenting, he disinfects things with boiling water, never the chemicals that are frequently recommended.

We've both noticed that if we drink something he's distilled or fermented, we don't have negative effects like headaches. However, we do often get headaches from anything that we drink that was commercially made. So while I could drink several glasses of his mead and feel fine, we will both often get a headache if we drink a bottle of beer or a glass of wine that was commercially produced.

We originally though it was the histamines that were a problem, since it used to be that fermented beverages bothered us while spirits didn't, now it doesn't seem to matter whether it's something distilled or fermented, it just matters whether he made it or not :)