Coffee / Caffeine, symptoms


Just a quick question. I drink a lot of coffee and other caffeine filled drinks to help me get though the day, and these actual seem to help with the fatigue. It doesn’t go away, not by any stretch, but I can often get through a day that I wouldn’t otherwise by able to. Now this may be purely psychological or it may be something else that I’m doing that’s having an impact (I also fine that eating properly helps). But I was just wondering if anyone else has found that caffiene products help them at all?



Hi Emma,I’m a follower of QI on the TV and Mr Fry said that any boost from coffee etc is actually just stopping withdrawal symptoms,hence that first cup in the morning is ,oh so good.I believe everything said on QI by old Stevie,'cos if it isn’t true by current knowledge they get lots of complaints, and the Research Elves are not happy.

I enjoy three daily cups of ‘Joe’ as the Americans call it,two of these being whilst I’m playing out having coffee and coffin/coughin’.I find that a Marlboro Light or two with a good cup of black coffee is very good for morale…mine.I know nowt of the fizzy caffeine drinks,but maybe it’s all about stopping withdrawal.A terrible thing to have no fizz.

Eating healthily is a good thing and I’m not a believer in ‘special diets’. We are Omnivores and unless thousands of years of evolution have happened in the past couple of hundred,Omni we remain.I love fruit and shovel plenty every day.Nobody medical has dared to tell me to stop smoking,as they realise that morale is a very important thing.

Right,excuse me, I’m going to roll a banana flavoured cigarette


Hi Emma,

I start the day with a soak in a hot bath (for the aches and pains), then my first batch of prescription meds and my vitamin D supplements, washed down with strong, hot filter coffee.

If I have to skip any part of that ritual (apart from the vitamin D), I am in a poor state. Since I’ve been trialling gabapentin, I sometimes do meds and coffee first, then the bath, as gabapentin is ideally supposed to be spaced every eight hours, which - if you spend a “normal” amount of time asleep - means you’re due one pretty promptly on waking up. I don’t stick rigidly with the eight-hour thing, as it’s impractical, but I do try not to dally the morning away, before taking the first one.

And yes, I do find coffee gives me a boost, throughout the day. I almost feel it has mild pain relieving properties, as I tend to feel a bit better after a nice brew, even if I didn’t take any painkillers with it. Just typing this is making me fancy one.

I don’t think this is unique to MS. When my dad was seriously ill - terminal, in fact - with a very painful form of cancer - he used to find that just sitting down with a coffee helped slightly. Maybe it’s the sitting down, maybe it’s the stimulant, maybe it’s that heat alone is comforting. I do get a similar boost from a hot meal, but not from a cold snack.

My trouble now is I’m starting to have waterworky problems, and have an appointment with the continence nurse in March. I already know I’m going to be advised to cut the coffee and cut the wine - which between them account for most of what I drink! Why would anyone bother with water, when there are such things as coffee and wine?




as tina says, the continence nurse will say to cut caffeine out because it irritates the bladder.

but pppptth, i say.

my bladder irritates the heck out of me so i’m going to carry on drinking coffee and lets see how it likes it!!

my logic is costing me a fortune on tena lady!

well hey…

carole x

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Hi Emma

I drink lots of coffee as I’ve found it helps with the fatigue - it might not be ‘good’ for us, but I figure it’s better than the meds which are offered for fatigue! Coffee and a chocolate biscuit (or two) gives my brain a much needed boost in the middle of the morning… when it’s not “coffee break” time, there’s usually a mug of coffee on my desk. So you’re in good company (although I don’t do the fizzy caffeine drinks) - there may come a time when my bladder objects, but for now the benefits of lots of coffee outweigh any drawbacks!



Love it Anitra & Pigpen! I do find myself making the cont.nurse believe I drink more corporation pop than I actually do, don’t know why, its my life! however I have stopped living on coffee, only have 3 mugs a day now.

Wobblyboy you can have a banana Cig nowadays if you have an e-cig, I’ve been smoking for 35 years switched to them 6 Months ago much cheaper and I still get my nicotine buzz and managed to reduce strength of tobacco I started on 24m now down to 18m.

Pauline x

Not to mention that you can smoke the ecigs in most pubs still.

Thanks for the replies everyone. I asked the question not just out of curiousity but because I was on the hunt a little earlier for the physiology behind muscle fatigue (I suffer badly with fatigue, and when I do, my muscles feel like they’ve just done an ultramarathon). This brought me to a research paper about muscle fatigue, with it saying that one of the causes was a failure of the release of SR Ca and can cause the muscles to go into tetanic contraction (see wiki for explanation!). From another site (not a research paper I don’t think), it said that there is some evidence that these contractions can be alleviated by caffiene - thus my question. I obviously don’t have a sufficiently science based background to say if the cause of muscle fatigue that I was reading about would be the same mechanism for people with MS, and I’m pretty sure that there are a few mechanisms. I also couldn’t say how reliable either of the sites were, nor how much evidence there is that caffiene helps. But I still thought that it was interesting.


Is that 24 million to 18 million?..A real improvement Pauline


Yep I guess you could say that WB, You’d think so the way my family go on about me smoking. If I didn’t have nicotine that would be an accurate amount of people I’d have upset by now.

Pauline x

Yep I guess you could say that WB, You’d think so the way my family go on about me smoking. If I didn’t have nicotine that would be an accurate amount of people I’d have upset by now.

Pauline x


I remember watching a programme on the bbc about the effects of caffeine, and they found that for regular drinkers, all it did was get people up to the same level as non-caffeine drinkers. Surprisingly, sage was best for giving a boost. There’s an article about it here -

I’m only an occasional drinker. Loose leaf tea is my tipple of choice. I can sometimes get a caffeine crash afterwards, which is obviously isn’t nice. Recently I’ve started having white tea or genmaicha (Japanese green tea mixed with toasted brown rice - sounds weird, but tastes lovely!). They’ve got lower caffeine levels, and I never notice a crash with them. They also feel very cleansing, which is definitely something I need after eating too much rich food in the last few days : )



It’s very interesting that you have found in your searches that caffeine may alleviate muscle contractions, as I have read this in a slightly different context.

I don’t know if you suffer from this - hopefully not, as it’s horrible - but I, and I know other MSers sometimes get a literal pain in the a$$. It’s really painful - sorry to be crude, but right in your bum-hole - and I have reason to believe it’s a muscular spasm. We are muscular there, of course!

When I researched it, I found it most often occurs at night (tick!), there is a name for it (which of course I now can’t remember without Googling again), but more surprisingly that it’s not uncommon in otherwise healthy people.

Anyway, it said that drinking a cup of strong coffee often afforded relief. Of course, because attacks typically strike in the middle of the night, this is not most people’s first inclination, but if you are ever affected, it’s certainly worth a try.

I only get it occasionally, but I’m sure mine is linked to MS (the same as the MS hug). So although both are only occasional (and so far never both at once), they’ve become: “Oh that chest pain!”, and: “Oh that bum pain!”



Hello all,

I have had to seriously curtail the amount of caffeine that I relied on (strong Rington’s tea) as I seemed to have one uti after the other. But now and then I do treat myself to a strong brew if I have something to do. It’s a shame that we can’t even have that, as there are so many things that we are prevented from having.