caffeine - an ok indulgence in moderation, or bad for MEers?

[sianrecovery]

Its New Years - and while I gave up drinking black tea for most of last year, the jolt it gave me crept back in via drinking coco powder, and now I'm back on the black stuff. Bad for the adrenals they say, and prevents iron being absorbed from food if you drink it at the same time. I'm looking for feedback from other people's experience of caffeine - starting from the assumption that we are not talking about consuming large amounts. Do people find its a permissable lift, or that they pay a price?
Does my New Years resolution need to be giving it up again? Or swtching from tea to coffee?

 

[Esther12]

Personally, I'd just do what feels best. If you enjoy caffeine, and haven't noticed it making you feel worse, then I'd stick with it. I gave up caffeine ages ago, and now it has a really exaggerated affect on me that I don't particularly like, but I don't make any effort to avoid it anymore (eg, coffee in cakes, ice-cream, etc).

I think there's some evidence that it's bad for autonomic things, but probably good in some other ways. A lot of CFS patients report it not being good for them, but others are different - I expect it depends person from person.

 

[Calathea]

I rarely had caffeine to begin with. Sometimes I'll use it therapeutically, i.e. a cup of white or green tea if I'm having trouble breathing. Very occasionally I will just have it because I fancy it, probably a few times a year. I do eat chocolate, and it's dark chocolate, but I only eat small quantities at a time. I can't tolerate soft drinks at all any more, and I've never drunk coffee: I like the smell but not the taste, and it makes my nose peel the next day.

 

[Sushi]

I agree that it is individual according to what is going on in the ANS and the gut. For me, a cup of low acid coffee in the morning is definitely therapeutic. It doesn't give me a "buzz" just clears my head a bit and raised my BP to normal levels.

I used to drink a lot of black tea in the a.m. for the same purpose and to raise fluid levels, but it was harder on my stomach.

I know that for some, it is poison, but again, we are all different.

Sushi

 

[ukxmrv]

I can drink coffee in the mornings when my cortisol is low with no apparent problems. No lift about from the BP which is welcome. Didn't drink coffee at all when ME first struck. Did years of drinking coffee, then not drinking coffee to compare.

 

[heapsreal]

i have given up caffeine several times for several months and to be honest, it didnt help improve my sleep, all it really did was give me less energy?? I think stopping it before 4pm is a good idea so it doesnt interrupt sleep.

cheers!!!

 

[xchocoholic]

I gave it up last april because I had a seizure and read that there could be a connection. I
never expected giving it up would help the blood flow in my brain but now when I lay down I don't
get the rush in my head that I used too. I also don't feel on edge all the time either and
find these helps me think more clearly. Not that i'm a rocket scientist, but I'll take what
I can get. And it stopped an internal shakey feeling I had that lasted fir at least 24 hours.

Minute amounts affect me so I can't have any.

There's an article and thread here on caffeine. Tc .. X

 

[heapsreal]

i think many of us are looking for a pick me up, has anyone tried acetyl tyrosine, it supposedly can help with increasing energy by increasing noradrenaline, its something on my to try list.

cheers!!!

 

[snowathlete]

i cut it out the last couple of months and have noticed no difference. It never used to do much for me anyway, and ive always had a lot.

I started drinking decaf and to be honest it tastes great anyway, so i wouldnt mind starting caffeine again, but no need to change my coffee for me. Obvioulsy some other stuff, like chocolate has caffeine in it, but im hoping to stay off that a little longer if i can.

 

[Sallysblooms]

I drink teas and cola, but mostly water. I enjoy doing what I like and just in moderation. I did have to give up Gluten, but the rest is moderation. I love my chocolate for sure.

 

[Sparrow]

I went off caffeine entirely for a while. Am having little bits of cocoa again now, which make me feel much better in some ways and worse in others. Probably something I should give up again eventually, but the up sides are nice.

For me personally, I do find that caffeine is pretty definitely a problem, and two forays into having a small coffee are probably responsible for two of my major setbacks. I could tell more vividly when I was REALLY ill to begin with, because the effect was pretty huge. Now it's more minor but still quite noticeable.

I definitely respond more strongly than a "normal" person would. The jitters and excitement don't bother me at all, but I imagine sensitivity to the other effects is probably not a great thing. I know that anything that dilates blood vessels is on the cautionary list for us when it comes to surgery, etc. I would assume the caffeine after-problems are probably related. I also think I may be one of those people with not quite as much anti-diuretic hormone as I should have, and coffee is a diuretic. Which means that when my blood pressure is already still on the low side and I probably don't have enough blood in me to begin with, getting rid of extra water is probably not a great thing.

But I swear, one of the compounds in chocolate does fantastic things to balance other parts of me out.

 

[Tony Mach]

My (preliminary) personal experience at the moment: Up to two pots of black tea per day is good for me helps me get out of bed and through the day. Two cups of coffee per day (and one pot of black tea) is bad for me (increased fatigue and muscle pain).

(And damned, I really like coffee much more than tea)

Though, while black tea helps me get through the day, getting to sleep is a bit of a problem.

 

[HowToEscape?]

Another case of try it yourself

My experience is that a modest amount of coffee seems to have more benefit than harm, with caveats.
It gives me between 20 min to two hours of much better functioning than without, unless I have not enough baseline strength to benefit. In the the latter case it's an annoyance, as it prevents me from sleeping until it wears off. That short term lift can be a real blessing, letting me do things that would be impossible otherwise. It also cheers me up, sometimes dramatically.

Studies which hit the news seem to be all over the map. For every one which declares it to be some sort of poison another finds it's good for you. I have to wonder if some of those studies were done because there was no work for the lab and they needed to keep busy.
I'd like to hear from someone who knows the biochemistry of it.

I tried going off coffee completely for a few weeks and didn't notice an improvement in overall health, but I did miss the temporary lift. I did have an earlier experience with too much coffee (for me that meant more than 16oz/day, strong); that led to being tired pretty much all day.

If you are having more than 16oz of properly brewed (1 scoop per 4-5 oz water) per day I'd suggest cutting back for 2 weeks and see if you feel better. Healthy people's tolerance for the stuff varies greatly, the effects on us are probably much more dramatic.

Just be careful that the amount doesn't creep up, and be cognizant of any amount less than 8 hours before sleep. Coffee can interfere with sleep for a surprising amount of time, well after the lift effect has worn off. Then again, there are people who can have coffee/tea and sleep soundly two hours later.

 

[Wonko]

......and then there's me, I go through periods when coffee will send me straight to sleep, normally not even managing to finish the cup.

 

[GracieJ]

This is an old thread, but what the heck. Caffeine is a two-edged sword for me: Bad for weak adrenals, as mine are. However... it activates the enzyme that speeds up ATP production, and on me that effect is priceless, so I use half a tablet each day just before work. That's the trade-off... hmmm... let me think... stronger adrenals and homeless, or risk caffeine usage and have a roof over my head.

 

[taniaaust1]

I couldnt drink coffee for several years due to getting like a food intollerance reaction to it. Then when my food intollerences mostly cleared up and I could drink it again.. turns out I'd developed a new issue for not being able to have it. It flared the POTS I'd developed, actually causing me to collapse just from one cup on one occassion.

Recently I started trying to drink it again (I miss being able to have a cuppa!!). I found that I can drink half a weak coffee without issue (but if I go over that Im in trouble with the POTS). Not only did I find that I can drink half a cup, I also found that half a cup highly beneficial. I was very tired on the day I tried having it again and it picked my energy up wonderfully. So since then Ive been occassionally having half a cup (not all days.only 2-3 times per week).

That was picking me up still every time till the other day when I had it when tired like I have been doing but for some reason this last time it didnt pick my energy up, it had no effect on me at all. (so now I have to figure out why half a cup can pick me up most days but have no effect at other times). Im going to buy myself some a third normal size or half size coffee cups now since Ive found out it can be useful. (I expect thou if I drank it daily thou, that I'd probably quickly develop intollerance to it again).

 

[November Girl]

This would appear to apply to a lot of studies that get done!

Studies which hit the news seem to be all over the map. For every one which declares it to be some sort of poison another finds it's good for you. I have to wonder if some of those studies were done because there was no work for the lab and they needed to keep busy..

 

[November Girl]

There was a time when any caffeine or even sudafed would make me edgy and sometimes shaky. Now I drink 2 8-oz cups of coffee most days, saving 1/2 cup or more to drink in the afternoon.

 

[IreneF]

Coffee is the Elixer of Life.

 

[satoshikasumi]

"The difference between medicine and poison is dose." ME/CFS patients often require lower doses of medications than healthy people, and caffeine is no exception. Coffee and tea in amounts smaller than the typical amount in the American diet, i.e. 1/2 cup of coffee twice a day on more active days can be quite useful (though it does not improve the underlying disease). Caffeine is a proven performance enhancer, particularly in endurance exercise. Coffee has one of the highest concentrations of antioxidants of foods in the American diet. It is also a helpful adjunct for nasal congestion, allergies, asthma, and depression. However, it has effects that can be negative in ME/CFS, such as decreasing blood flow to the brain and activating the sympathetic nervous system, already overactive in this disease, as well as interfering with sleep.

In my experience, small amounts of coffee, tea, or chocolate can significantly increase my energy, physical and mental, without causing a crash later on or side effects. It also helps with respiratory symptoms like coughing. But, if I consume the amount of coffee normal people drink, it is likely to turn on me- instead of getting more energy, it will make me tired and dull, get autonomic symptoms like dizziness, and I will experience a crash as it is wearing off followed by increased trouble sleeping and next-day malaise.

Caffeine is nothing terrible for ME/CFS. I would not worry about addiction. However, it is best avoided during a serious relapse- if you are in that state where you need complete bedrest, and you feel like you need to avoid light and sound, caffeine will only make it worse.