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

[Jonathan Edwards]

I wonder now if this was possibly connected to MCAS.

Can I ask what you are meaning by MCAS, @Arisoned ? My understanding is that MCAS is supposed to be a term for presumed mast cell activation that is not allergen related - i.e. not standard allergy. I am also unclear as to quite what symptoms it is supposed to have. I think allergy to alcohol would be surprising since it is not in itself an antigen recognisable by mast cells. It could possibly act like a hapten does but I have never heard of evidence for that.

All these stories are useful but the more they are described directly in symptom terms rather than presumed mechanisms the more it helps me. The idea is to try to work out if there are mechanisms in ME/CFS that people have not thought of or misinterpreted.

Similarly, I would prefer to keep away from description in terms of POTS symptoms because recent discussions suggest that symptoms said to be associated with postural tachycardia may not actually have much to do with the POT itself.

The stories are beginning to show some patterns but I will defer any thoughts on that until everyone has had a chance to vote. I don't want to bias people!

 

[Ash]

I wonder could all this not just be explained by being unwell in whatever way a person might be affected, differently for everyone, and consuming something toxic and that being a bit much for a sickly body and provoking some extra symptoms or intensifying the standard ones. Also seems maybe we get dehydrated pretty easily lots of reports of people drinking more water than pre illness.

I have known people who found alcohol really helpful.


I look forward to the verdict.

 

[Haveyoutriedyoga]

I forgot to say that I sometimes get a stuffy/runny nose and aches or pain in my cheek/lower forehead, on the left.

On the occasions where I feel OK after one, maybe two small glasses of red, I feel tipsy and enjoy it and feel energetic and happy.

Any more than tipsy always makes me feel awful immediately (all symptoms described here and in my previous comment) and I get a hangover, can't say much more about that because it has been too long since I tested it.

 

[boolybooly]

Same results from alcohol as pre-ME but from a third of the quantity.

Possibly worse destabilisation of vestibular function and worse hangover effects. I recall it made me feel more woozy and hangovery at the time the ME started in 1986.

After ME onset I was glad to have been given a special license for the initiation to join the "hoods" rowing club within a club at my college, comprised of of tragic/heroic rowing failures (we lost the headship i.e. leading position in the college races) by drinking 8 pints of orange juice and lemonade instead of 8 pints of guinness.

The undergrad community of my college quietly recognised there was something very wrong with me, knew enough from received wisdom about such matters to recognise alcohol was not recommended and were kind enough to respond appropriately. Even the provost was sympathetic and gave me an extra year to complete my degree just from looking at me! Though at the same time medical officialdom in the form of doctors denied my symptoms existed and could not offer a diagnosis.

I still take the occasional dram of drambuie. It has medicinal value in calming febrile hyperactive nervous mentation and the after effects are not as unpleasant as straight whiskey or brandy which tend to have an excitatory effect the following day but its not recommended repeatedly or in excess as it makes me clumsy and lacking in perspicacity. Plus it only takes a tiny amount, about one measure i.e. 25ml and that is plenty.

 

[oldtimer]

Alcohol makes no difference to my ME symptoms. I can't drink as much as I used to for the same effect but I put that down to aging.

 

[Tree]

My alcohol intolerance is that I get a hangover effect from just a sip, directly and also a poisoned feeling. (I did not vote because it is immediate, not delayed).

I have also developed a lactose and fructose intolerance since I got ill.

Could this combo be related?

Could this combo mean the liver is somehow malfunctioning?

There was an it-researcher that hypothesized that maybe the liver was involved.

Edit; before I got ill, I drank alcohol moderately and rarely had hangovers. Also ate loads of fruit without issue.

 

[Sean]

Timing is looking like an interesting issue.

I ticked "Aggravation of ME/CFS symptoms soon after", but it is not always soon, it can be delayed. Or at least I don't notice them, maybe because being distracted by the social setting I am in.

The general effects are also cumulative. If have just one drink a day it adds up quickly over a week and I am definitely worse off by then. Getting close to an alcohol-free life these days.

Was not much of a drinker before I got ME, never been able to tolerate much alcohol, always taken me longer to recover than the average person, and I have sometimes wondered if that indicates some kind of prodromal state for ME.

 

[Sasha]

Quite a few people have mentioned a 'poisoned' feeling and I'm wondering what that feels like. Presumably not a lot of us have actually been poisoned in the past and so aren't basing that label on experience - and maybe different poisons (strychnine, arsenic, etc.) produce different symptoms.

So when different people are saying 'poisoned', I'm wondering if they mean the same thing. Is anyone able to take a stab at describing the symptom(s) in a more direct way?

I think we have a similar problem with OI, where our standard vocabulary isn't up to the job, but I wonder if we can make some progress with 'poisoned'.

How are you interpreting 'poisoned', @Jonathan Edwards?

 

[tuha]

I put "worsened "hangover" effect the next day. Somehow poisoning but it´s difficult to describe it.
I can drink glass of wine or a small beer. Sometimes I drink 2 beers but the next day I feel bad, I think it´s a bit different to a normal hangover.
What is strange that if I am very exhausted and I drink 2 beers for some hours I get energy and I feel better but the next day is horrible.
Also many years ago, when I had mild ME/CFS I had a periode of some months when I felt almost healthy but then one day I got drunk I throw up and my ME/CFS got again much worse. I ask myself if I wouldnt drink that day, maybe I could be healthy.

 

[MeSci]

As I drink a small amount every day, I can't say whether I feel worse, the same or better the next day.

 

[Haveyoutriedyoga]

Quite a few people have mentioned a 'poisoned' feeling and I'm wondering what that feels like. Presumably not a lot of us have actually been poisoned in the past and so aren't basing that label on experience - and maybe different poisons (strychnine, arsenic, etc.) produce different symptoms.

So when different people are saying 'poisoned', I'm wondering if they mean the same thing. Is anyone able to take a stab at describing the symptom(s) in a more direct way?

I think we have a similar problem with OI, where our standard vocabulary isn't up to the job, but I wonder if we can make some progress with 'poisoned'.

How are you interpreting 'poisoned', @Jonathan Edwards?

I am interested too, I don’t think I have ever used the word poisoned but I knew from the beginning that people with MECFS use the term.

a few descriptions from other threads:

There are a couple words that may lose their conventional meaning with ME/CFS. Balance/vertigo/dizziness come to mind. Neuropathy. Brain fog - yuck, but it's accepted (personally I'd opt for cognitive decline and the erosion of clarity). Ditto for malaise, not happy with it.

But all of these really make it through the edit sift.

One that may not, and yet seems fairly common, is the "poisoned" feeling. How does one feel poisoned? Hard to describe. At its best it's a constant hot steam inside of me; at its worst, it is a persistent acid-like burning that consumes every minute. I feel it always. I can taste it sometimes. It's inside my chest and in the bottom of my belly. Me eyes burn from it, as do my thighs and shoulders.

Yet I've never been poisoned, and I suppose most readers will not have been, and so i'm not sure what truly being poisoned feels like.

Nevertheless, it's a thing for some of us, and it's a notable one for me.

I've only had it for short periods, but I came up with the same word long before the internet. I've found it's best not mentioned to most medical professionals, but it's very descriptive of how it feels.

I really like the idea of encouraging the use of people's own descriptions. If we use some medical terms it's possible we're more likely to be misunderstood or disbelieved, because doctors associate them with a specific set of underlying causes that seem unlikely to be at play in ME/CFS.

 

[Turtle]

Before ME/CFS I drank just a little alcohol, later I tried a bit of wine at a dinner party but it gave me hot flashes, made me a zombie and at night too wired to sleep.
Not social at all. So I stopped that.
After a bowl of yoghurt from the fridge I later used 1/3 of a shotglass of port just to get warmed up again.
Since diabetis I don't use any alcohol anymore. For warming up a hot drink will work.

 

[Kitty]

Quite a few people have mentioned a 'poisoned' feeling and I'm wondering what that feels like.

I once had a long discussion about this with someone who got ill a bit later in life than I did, and he said the closest thing from his preME/CFS life was a hangover. He played in a rugby team in his teens and early 20s, and he'd had plenty of them after winning important matches.

It's a strong feeling that there's something in your system that doesn't belong there, and your body really really wants rid of it. Waves of severe nausea, diarrhoea as well, dizziness, pounding headache, thirst, whole body hurts, and muscles feel as if they've been flushed with acid.

A severe alcohol hangover probably is a mild case of poisoning, so although I've never had one, it makes sense to me that he'd draw a comparison with this.

 

[Sasha]

muscles feel as if they've been flushed with acid.

Thanks, Kitty - several people have mentioned an acid or burning sensation.

 

[Evergreen]

When my ME/CFS was mild, I was still able to drink a little wine. But twice I had spirits - one glass of Pimms (no other alcohol before or after), and on the other occasion a few sips of a cocktail to be polite (again, no other alcohol before or after) - and they had a sedating effect. After the Pimms, I literally found a bed (in someone else's house) and fell fast asleep in it. I couldn't tell anyone what was happening, I just knew I had to go to bed straight away. After the sips of a cocktail, I couldn't go to bed immediately, but slept for 12 hours, was woken and had to be up. There are photos and I look grey.

This sedating effect of spirits reminded me of the onset of the relapse of my ME/CFS after an apparently complete recovery. I felt suddenly like I had to lie down right away during a dinner with dear friends, where we were enjoying wine which happened to be unusually strong. I couldn't tell them what was happening, I just had to leave the table and get into bed.

So for me, alcohol became sedating. I chose "other unpleasant symptoms" in the poll, as well as "aggravating ME/CFS symptoms" because it felt different to my usual ME/CFS symptoms. It wasn't just needing to lie down right now, it was needing to sleep immediately.

I tried non-alcoholic wine - I felt bad in the following days, in terms of worse ME/CFS symptoms, but PEM from talking and stimuli would also have contributed.

I just stopped drinking.

Edited to add: The symptoms I got with alcohol + ME/CFS were different from a hangover when healthy. A healthy hangover for me involved nausea and disturbed sleep, whereas the sedating effect I got from tiny amounts of alcohol with ME/CFS brought no nausea, just coma-like sleep until someone woke me.

 

[rvallee]

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

From testimonies of this in the LC community, which are far more common than in the ME community, I get the impression that it is more associated to POTS and dysautonomia, as well as MCAS, than ME/CFS. With the overlap between those, and how those overlaps fluctuate, it's hard to tell. However I mostly remember seeing it mostly mentioned early in the illness, and that it subsides a bit over time. Which is usually the case with more severe dysautonomia symptoms.

I would really like a good survey on this, though. As in thousands of responses and more questions. Something like from the Patient-led group that sprung out of Body Politic, they are the best at this kind of survey. So much about this kind of data is in how the questions are asked.

 

[Peter T]

It is an interesting question ‘is PEM and other features of ME related to something that shouldn’t be there or to something missing?’ At times it subjectively feels like one and at times the other.

 

[AliceLily]

Also seems maybe we get dehydrated pretty easily lots of reports of people drinking more water than pre illness.

Yes, this was very true for me.

 

[Sasha]

I don’t think I have ever used the word poisoned but I knew from the beginning that people with MECFS use the term.

I've been thinking about this. Until the last few days, on this thread and the 'Concept of ME/CFS' thread, I don't recall any PwME using this term, and if someone had asked me whether feeling poisoned was a feature of ME/CFS, I'd have said 'No'.

This is clearly a failure of my memory, but the fact that I didn't remember it makes me wonder if it's relatively rare, or something that only gets discussed in relation to something very specific that doesn't relate to me much, such as here with alcohol intolerance (I rarely drank alcohol even before being ill), or only occurs in a subgroup of patients, such as those who feel poisoned when they have PEM (if people do - I'm not sure if anyone has said that).

A search for 'poisoned' on the forum brings up about 300 posts (not all relating to the symptom of being poisoned). I wonder if it's worth mining the forum for those mentions.

We've been discussing on another thread @forestglip's idea to do a daily summary of the forum's content but people had concerns about accuracy, privacy, fossil-fuel energy use, copyright, etc. so I think it's not going ahead but I wonder whether using it to list verbatim - not summarise - every post where someone discussed being 'poisoned' as a symptom might be a good use. (Perhaps similar listings could be done for other symptoms that @Jonathan Edwards is interested in.)

It's a use that would have to be discussed and agreed by the S4ME committee, of course.

It would also be possible to produce such a listing for 'poisoned' the old-fashioned way of cutting and pasting. Maybe we could share the work.

 

[hotblack]

I wonder whether using it to list verbatim - not summarise - every post where someone discussed being 'poisoned' as a symptom might be a good

You used to be able to do this with search engines quite well (for public mosts at least) but they seem to have all gone downhill
https://duckduckgo.com/?t=h_&q=site:https://www.s4me.info/+poisoned&ia=web
The forum’s built in search can possibly be used/scraped
https://www.s4me.info/search/34315704/?q=Poisoned&o=date
I think the newer XenForo 2.0 has an API which may make this sort of thing easier