Alcohol Tolerance Poll

[antares4141]

. Btw I have tried complete abstinence several times (I approach my health experimentally, so have tried a lot of things) and my illness did not change even one little bit. Too bad, abstinance would be an easy 'treatment' to maintain - and cheap!

If you have four or five different things causing your symptoms it's very hard to realize the benefits of abstaining from just one. Also you have to consider how powerful an effect denial can have on us. It's very easy to fool ourselves. Other thing you have to realize is effects can be cumulative and sometimes build up subtly and relatively unnoticed.

Mold water damaged buildings, gluten and other food sensitivities, water (I'm now a big promoter of distilled water) chemical exposures household cleaners (inhaled absorbed through skin) out-gassing from furnishings, for highly urbanized areas air pollution. Just a few things that need to be considered.

 

[penny]

Also you have to consider how powerful an effect denial can have on us. It's very easy to fool ourselves.

I'm sorry but just because my experience does not agree with yours does NOT mean that my experience is not valid or that I am in denial. And I assure you I am aware that there are MANY, MANY factors at play all of the time. Which is partly why I repeat my experiments at different points in different circumstances (as well as track as many factors as I can in excruciating detail), and partly why I only say what my individual experience is --- not what anyone else's should be or what they should do.

 

[antares4141]

I should probably put below my posts something to the effect that I am not an expert am often wrong and for a mairead of reasons nobody should treat there condition,s based on anything I say unless they have thought about it carefully come to a lot of the same same conclusions as me and or feel there isn't any harm in doing such. The reason I post here is to share my 16 years of experience and what I THINK I've learned (I've fooled myself many times) from my illness which may or may not have commonalities with others in this group.
I did not mean to say your in denial, I used to drink anywhere from one to three shots a night of whiskey and was in full denial so I was mostly speaking from my own experience and if I came of as trying to project mine onto yours I apologize for that.
The truth is I don't know what yours is and weather we have the same things in common or not.

 

[Sherlock]

Btw I have tried complete abstinence several times (I approach my health experimentally, so have tried a lot of things) and my illness did not change even one little bit.

I haven't had a single drink in over three months. It made no difference whatsoever, same as you. No miracle cure for CFS I even wonder if I might be losing my high-powered ability to manufacture aldehyde dehydrogenase enzymes.

 

[penny]

I did not mean to say your in denial, I used to drink anywhere from one to three shots a night of whiskey and was in full denial so I was mostly speaking from my own experience and if I came of as trying to project mine onto yours I apologize for that.
The truth is I don't know what yours is and weather we have the same things in common or not.

I'm probably a little sensitive to that particular word to, since I feel like alcohol is something I've always been very wary/aware of. With a familial history of alcoholism (both grandfather's), and a mom who made it a point to educate me about those risks, I think I've regarded alcohol as something I have to always be aware of. That's not to say I've never gone through periods when I've drank more or more regularly than I should (um, grad school but I feel like I've always been very aware of when drinking becaomes a pattern and my internal alarms go off and I make changes. So I feel like my relationship with alcohol is kind of the opposite of denial.

Also, probably thanks to my mom, my predisposition is to assume that alcohol is innately not 'good for ones health'. So honestly I was surprised that alcohol consumption seemed to have NO impact on my ME symptoms. I assumed that of course abstinence would be better, but that assumption just didn't pan out for me. I do realize though that my experience puts me in the minority within this community but again, that doesn't mean it's not true for me. Just like I'm in the minority that vitamin d supplementation makes me very sick, I guess I'm just weird

 

[penny]

I haven't had a single drink in over three months. It made no difference whatsoever, same as you. No miracle cure for CFS I even wonder if I might be losing my high-powered ability to manufacture aldehyde dehydrogenase enzymes.

Too bad! I know it's too much to hope for but man, I would give my left leg (well, both legs!) for a miracle cure!
And it's good to know I'm not the only weird one here . Though I'm out of the experimentation pool for a while, being pregnant alcohol is totally off limits, but all the hormones and pregnancy stuff confound any conclusions - so not very useful data!

 

[Marlène]

hello penny

i've read that some people can drink liters of alcohol without any hangover. It was due to their liver metabolism that was out of whack.
If vit D makes you very sick, you probably know it is very often linked to an auto-immune condition.

 

[penny]

hello penny

i've read that some people can drink liters of alcohol without any hangover. It was due to their liver metabolism that was out of whack.
If vit D makes you very sick, you probably know it is very often linked to an auto-immune condition.

Oh, yeah, I'm not one of those! I used to get hangovers if I drank too much (far less than liters!), but it does seem like there is a wide variety of baseline 'normal' ability to process different chemicals so it makes sense that some folks can do what you describe.

Not to get too OT with the D, but I have had positive ANA's in the past, but for whatever reason the doctors have always said they aren't really anything to worry about (something about size or speckling? or other tests? I don't remember). And I do have some familial history of autoimmune disorders. So dr wise, it's been a dead end for me so far.

 

[Marlène]

but I have had positive ANA's in the past, but for whatever reason the doctors have always said they aren't really anything to worry about (something about size or speckling? or other tests? I don't remember). And I do have some familial history of autoimmune disorders. So dr wise, it's been a dead end for me so far.

Similar story here. Positive ANA's for 30 years and totally sun intolerant (flu like symptoms and sunburn). Some doctors say it is kind of lupus; others say it cannot be.
I just know it is auto immune related because I tested positive for antiphospholipid antibodies, had trombotic purpura rash and other fun stuff when pregnant 17y ago and never recovered after getting sick during my last pregnancy 9y ago.
I guess I was allergic / developed antibodies to my children

 

[penny]

Similar story here. Positive ANA's for 30 years and totally sun intolerant (flu like symptoms and sunburn). Some doctors say it is kind of lupus; others say it cannot be.
I just know it is auto immune related because I tested positive for antiphospholipid antibodies, had trombotic purpura rash and other fun stuff when pregnant 17y ago and never recovered after getting sick during my last pregnancy 9y ago.
I guess I was allergic / developed antibodies to my children

Interesting! Mine seems a little different, I haven't noticed strong reactions to D from the sun, but just via supplementation. I tried doing a 'test' last time I was on vacation with lots of sun exposure, but unfortunately it was hard to stick to my very restricted calcium/D free diet when traveling, so a muddled experiment! And I'm not sure if it's the D or calcium (increased via D)...

Thankfully, so far, I haven't had any worrying/unusual symptoms during pregnancy. OI's much worse, but I don't think that's too weird considering typical effects of hormones on blood pressure. Okay, now I'm getting way off topic! Apologies!

 

[AFCFS]

I was dumbfounded as to why I felt better staying on the porch of a 70 year old mold infested house situated in the middle of a western NC temperate rainforest.:

Western NC - close to where I call home - can almost hear the dueling banjos if you put your ear to the wind.

Since the "normal" college exuberance with alcohol, many years ago, I have never been a big drinker anyway. But after having been Dx'd with CFS and a moderately non-alcoholic fatty liver, I have stopped drinking at all to see if I can correct that.

Sometimes it seems that "doing the right thing" has messed me up more than "enjoying the wrong thing." It was after a long term of a good exercise and diet program that CFS hit me hard. And I had quit smoking over a year before that. Sometimes I think, why bother?

And then sometimes I also think that alcohol is God's gift to people who are SOL, and have even envisioned finding that retirement spot in the woods, after there is no more money - or maybe just no more will - for medical consults, medicines, and treatments - just divorcing myself from the social fabric as much as I can. Maybe a liquor store nearby would be a higher prerequisite than a hospital.

- There is something to be said about a dulling stupor; and sometimes ignorance is bliss.

 

[Sherlock]

hello penny

i've read that some people can drink liters of alcohol without any hangover. It was due to their liver metabolism that was out of whack.
If vit D makes you very sick, you probably know it is very often linked to an auto-immune condition.

fwiw, I can take 20,000iu vit D and not feel anything

 

[Sherlock]

Interesting! Mine seems a little different, I haven't noticed strong reactions to D from the sun, but just via supplementation. I tried doing a 'test' last time I was on vacation with lots of sun exposure, but unfortunately it was hard to stick to my very restricted calcium/D free diet when traveling, so a muddled experiment! And I'm not sure if it's the D or calcium (increased via D)...

Thankfully, so far, I haven't had any worrying/unusual symptoms during pregnancy. OI's much worse, but I don't think that's too weird considering typical effects of hormones on blood pressure. Okay, now I'm getting way off topic! Apologies!

I used to get sick from the sun, but not so much at all after getting CFS-sick.

Calcium, huh? I used to regularly have turnip greens, but now I have an aversion to them. Maybe calcium is bad because it lowers (or blocks absorption of) magnesium? Thanks, that's something for me to mull over, as to why I avoid greens anymore (but not green vegetables like broccoli). I'd been guessing it was the oxylates in the greens, maybe that's wrong.

And no need for apologizing Anecdotal reports can have more value than studies, when talking about such a nebulous thing as CFS.

 

[WendyM]

I have always been intolerant of alcohol, never felt good after consuming even a small amount. Arms and legs feeling heavy and tingling and head swimming.

 

[Moxie]

About 2.5 years ago, I began experiencing immediate and debilitating migraines after even the tiniest amount of alcohol. In hindsight, it seems this was one of the first insidious symptoms for me.

Not being a glutton for punishment, I stopped drinking alcohol altogether for over a year, but in the past few months I have mostly gotten away with a very rare half glass of white wine. If I do get a headache, it's not the raging migraine I experienced at first. I was never a big drinker, so it's not a great loss, but I do miss the occasional glass of really good beer. Ah well, since I've developed a gluten intolerance also, that's off the table anyway. Booo.

 

[Allyson]

Has anyone asked their doctor why this alcohol intolerance might be present?

have not read all the posts Cort but my PP specialist had a clear sim;e and logical answer

Alcohol is a vasodilator

so when we drink it our veins which are already compromised dilate further relusting in lack of blood to theheart and brain.

worse if you drink in a hot environment or standing up - common scenarios

further, normal hangovers are due to dehydration of the brain - alcohol is also a diuretic

this is why i think our crashes are like hangovers anyway - with or without alcohol

hangover research found dehydration of the brain was a mjor cause of problems - treatment involves fluids and electrolyte replacement and B vitamins i think too

maybe all two-pot screamers have (undiagnosed) EDS?

more detail on this and our defective veins at this link


http://forums.phoenixrising.me/index.php?threads%2Fis-me-due-to-ehlers-danlos-syndrome-stretchy-veins.20351%2F

 

[Allyson]

About 2.5 years ago, I began experiencing immediate and debilitating migraines after even the tiniest amount of alcohol. In hindsight, it seems this was one of the first insidious symptoms for me.

Not being a glutton for punishment, I stopped drinking alcohol altogether for over a year, but in the past few months I have mostly gotten away with a very rare half glass of white wine. If I do get a headache, it's not the raging migraine I experienced at first. I was never a big drinker, so it's not a great loss, but I do miss the occasional glass of really good beer. Ah well, since I've developed a gluten intolerance also, that's off the table anyway. Booo.

so following the logic of the above post you may be ablt to tolerate some alcohol if you

1 stay cool - take off excess clothing ( always makes for a fun night ) and maybe put on a chill pack -(? the ice bucket perhaps lol)

2 lie down for preferance during and after drinking or at least sit not stand and not on a high stool - dangling legs are a no-no for EDS - no muscle movement to pump the blood up that long distance

3 Hydrate ( and take electrolytes) well, before and after - coconut water chasers anyone?

4 take B vitmins - IM B12? at some point

Worth a shot...

 

[Allyson]

I have always been intolerant of alcohol, never felt good after consuming even a small amount. Arms and legs feeling heavy and tingling and head swimming.

yep, there are so many things that the EDS theory expalins logically which is why I like it.

Alcohol intolerance and heat intolerance are two

Do you have problems with heat as well - extreme heat like a hot crowded room or ambient temps of say over 34 degrees Celcius?

( and BTW migraines are a common symptmm of EDS along with the following...and more. )
Symptom check list - you or close family members have any of these?

migraines, allergies, hay fever, asthma, excema, varicose veins, postive gorlin's sign, IBS, gastric reflux, hernias, diverticulitis, bendy joints or hyperflexibility, soft skin, easy bruising and bleeding, petechiae, thin translucent skin that you can see the viens through or unusual scarring esp on lower legs, unusual stretch marks. Aneurysms too and mirtral valve problems. Also POTS/OI and most ME symptoms - fainting dizziness etc Anectdotally - on EDS pages - people complain of brain fog and crashes, sleep issues, debilitating "fatigue", but, as is the case with ME - these symptoms are often not treated seriously by some medical researchers.
World-renowned EDS Expert Dr Rodney Grahame points out that, in America, almost 650,000 cases of EDS are missed ANNUALLY, based on studies that suggest almost 95% of cases presenting to clinics are missed, most often diagnosed with other things (Fibro,ME/csf, etc.). -
See: http://tinyurl.com/cc5qk57

 

[MeSci]

I am a bit less tolerant of alcohol than before ME. Like someone else, I gave it up for a year, but in my case it was after a suicide attempt and because I just didn't fancy it. Then I fancied trying it again and found I was OK, although not able to cope with the prodigious amounts I used to drink, which is probably a good thing. I've given up beer and gin and tonic due to the grain and sugar, and fortunately just at the time I realised I was going to have to ditch the G&T, which was my favourite drink, I also realised that I had gone off it! I now stick mostly to wine, with the occasional cider.

Unlike someone else, after using cannabis for many years I decided to try going without it to see if it helped to reduce my sinus problems. I don't think it made much difference, but it was having very little positive effect either so I don't miss it at all.

I tend to get a very hot and flushed face after a drink or two, but it wears off. I am able to cope with a good binge on occasion without much in the way of adverse effects.

 

[Allyson]

Western NC - close to where I call home - can almost hear the dueling banjos if you put your ear to the wind.

Since the "normal" college exuberance with alcohol, many years ago, I have never been a big drinker anyway. But after having been Dx'd with CFS and a moderately non-alcoholic fatty liver, I have stopped drinking at all to see if I can correct that.

Sometimes it seems that "doing the right thing" has messed me up more than "enjoying the wrong thing." It was after a long term of a good exercise and diet program that CFS hit me hard. And I had quit smoking over a year before that. Sometimes I think, why bother?

funny you should say that AFCFS- a lot of folk mask their symptoms with caffeine, alcohol and other stimulants - when they give the up for a health kick symptom often kick in


my symptoms started in force when i gave up caffeine ( vasoconstrictor and stimulant) after a trip to Italy ( air trave = decompression due to height , prolonged time in hot environment sitting still and largley upright - about 22 hours for us Aussie alas.

(I used to think it may have been the insecticides they sprayed us all with o in the plane in return to Aus....lovely !)

cheers

ally