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Do you find coffee and other caffeinated beverages helps with your symptoms or does it make them worse?
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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I love having a coffee at a cafe, it is a treat for me, yay to be out of the house !!! I am so..... happy, all is good with me and the world feeling. ( if only ).
I find one coffee in the morning is all I can do in one day and it is a small teacup full, not large, otherwise I would get the awful wired-ness, and tremors which is really unpleasant.
Yeah, Rosie! Let's go out to one of the cafes! (Too bad you are in another country though- could
be pretty hard to pull off!!) I totally agree - It is such a treat to be able to get out and do
this!
@Xhale19991
I'm a poor metabolizer of caffeine according to my 23and me results. this explains why I can't have caffeine after lunchtime, or it interferes with my sleep.
Morning I need it to get me going - I have 2 tsps a day - I have 2 coffees - 1tsps of decaff and 1 of non decaff in each - boy do I look forward to it
Yes, I'd love to meet you at a café Raindrop Bet we would have lots of laughs you and I too lol xxx
t
I have the same thing after aabou 11 am if i drink coffee i don t sleep hat night
but now i have started asking for blends with low caffeine content
i was off it for years but now i take a little every morning to get me going a bit - and I really look forward to it too @maryb.! In the afternoons i have a few squares of dark chocolate
and it is a vasoconstrictor so in small doses may help the POTS
I suspect a lot f people use it to mask their POTS symptoms - my mother drank cup after cup all day long - then took sleeping tablets to sleep; she also smoked and nicotine is another vasoconstrictor
Ally