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Caffeine

Discussion in 'General ME/CFS Discussion' started by Xhale19991, Feb 22, 2014.

  1. Xhale19991

    Xhale19991

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    Do you find coffee and other caffeinated beverages helps with your symptoms or does it make them worse?
    Allyson and rosie26 like this.
  2. justy

    justy Senior Member

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    Makes me wired, have to avoid like the plague. Other people I know it helps a bit. I think it depends how your adrenals are - mine are not great.
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  3. SickOfSickness

    SickOfSickness Senior Member

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    Wired. I avoid caffeine.

    Decaffeinated tea has a stimulant which I have to be careful of too. In small amounts, like a half cup, I have benefits. I notice some of the bad wired effects too if I have more.

    Chocolate is very low on caffeine but also has a natural stimulant in it. So I limit cacao too like with decaf tea.
    justy, Allyson and rosie26 like this.
  4. SOC

    SOC Moderator and Senior Member

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    Generally bad. I avoid caffeine for the most part. Like exercise, there's always a payback later. I do use caffeine when I'm exhausted and have to do something, but I do it knowing that the next day or two I'll be in a minor symptom flare.

    It doesn't make me wired, though, but I don't take much even when I do use it.
    rosie26 likes this.
  5. Ayaju

    Ayaju Senior Member

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    The most recent thing I heard was from David Wolfe who said that (coffee) is good for some people and not for others! I love coffee! But I am down from a grande bold to a short bold! That's 8 oz. Starbucks every morning! With organic heavy whipping cream and a splash of structured water to make it healthier!

    Judy
    rosie26 likes this.
  6. Snowdrop

    Snowdrop Senior Member

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    I find coffee helps me.
    I have continued to have 1 or two cups a day.
    The first one when I get up (which is sometimes in the afternoon or late morning). Those days I usually have one cup.

    For years I have thought that drinking coffee in the evening did not bother me. However as my sleep was so bad I avoided it always. But a few years ago I found pain relief in the codeine that my Dr gave me which also had caffeine in it.

    It's funny you brought this subject up just now because I've been thinking for a while that coffee might actually help me at night.

    I had a coffee last night and didn't notice a difference in sleep one way or the other but did notice a small difference in pain.
    Although it's early days yet, I'm going to continue with a coffee at night. I also tend to want it then.
    Perhaps continuing with a night coffee may leave me too wired eventually. I'll post back.
    rosie26 likes this.
  7. Ema

    Ema Senior Member

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    Love caffeine! It displaces adenosine which makes us sleepy and in hibernation mode. It also increases dopamine and cortisol.

    High adenosine levels have been shown in studies of some ME/CFS patients as well.

    And it can help fight stress...

    http://blogs.scientificamerican.com/WSS/post.php?blog=39&post=1615

    I think a lot has to do with the dose.
    rosie26 likes this.
  8. SOC

    SOC Moderator and Senior Member

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    I wonder what the physiology difference is that makes caffeine beneficial for some of us and bad for others?
    rosie26 likes this.
  9. maryb

    maryb iherb code TAK122

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    @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:)
    Allyson and rosie26 like this.
  10. Ayaju

    Ayaju Senior Member

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    Best way to know: Have someone muscle test you on coffee and caffeine products!
    rosie26 likes this.
  11. rosie26

    rosie26 Senior Member

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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 !!!:D I am so..... happy, all is good with me and the world feeling. ( if only ).:rolleyes:

    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.
  12. Raindrop

    Raindrop Senior Member

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    Before I became disabled from this illness when working I had to drink mega amounts of caffeine to avoid
    falling asleep at my desk. That was many years ago and I am sure it made my over-all condition worse!
    Fast forward.......For many years I have found that it is harder to function without a **small** amount of caffeine
    when I get up in morning.
    Because prior I "burned out my stomach" from the acid in the mega caffeine, I now only tolerate a single shot of
    caffeine in milk (to coat the stomach) in the form of a cappuccino. I have this every morning and it
    helps a tiny bit with the brain problems (as has been borne out in many studies of "normals")
    Any more than this and I get jittery and it messes me up. Have to be VERY careful not to have
    any caffeine after 5pm or can't sleep. Tea over-stimulates me and don't like the taste
    anyway. I love coffee houses! That is the independent sort; not the big chains.
    rosie26 likes this.
  13. Raindrop

    Raindrop Senior Member

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    Yeah, Rosie! Let's go out to one of the cafes!:redface: (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!
    justy and rosie26 like this.
  14. rosie26

    rosie26 Senior Member

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    Yes, I'd love to meet you at a café Raindrop :D Bet we would have lots of laughs you and I too lol xxx
    Raindrop likes this.
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Caffeine and especially coffee are good for me--at least they improve my symptoms--everything from OI (vasoconstricting) to just feeling a lot better with it. I only drink it in the am--one or two mugs.

    Sushi
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  16. IreneF

    IreneF Senior Member

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    Coffee is one of the few things that helps me. I drink it even when it upsets my stomach, because it helps my headaches, muscle aches, and ability to think.
    rosie26 likes this.
  17. Allyson

    Allyson *****

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    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
  18. Raindrop

    Raindrop Senior Member

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    OK, Rosie, how about say 3pm tomorrow in some Country in between us both?;)
    rosie26 likes this.
  19. Raindrop

    Raindrop Senior Member

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    Pardon my ignorance, but because I have POTS and also like caffeine AM to try to get a lift up from
    the horrendous process of getting up in the morning, can you explain a bit more how caffeine helps POTS?
    (I also have HUGELY dysregulated BP (highs to lows) and high Pulse.) Never thought of that!
    Allyson likes this.
  20. xchocoholic

    xchocoholic Senior Member

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    Caffeine pills don't make me jittery like coffee so I suspect there's some other chemical in coffee doing this. I'm less jittery with Sozo coffee but not entirely.

    I started using caffeeine to undo the effects of my nightly klonopin. Caffeine blocks adenosine and keeps us from feeling sleepy.

    Last month, I started using caffeine pills to counter the sleepy feelings I get from PEM. It works for that but I'm still getting my rubbery legs and arms feeling. And I still can't think as well as if I just took a few days to rest.

    It doesn't help my OI, oh and pots. A 1/4 - 1/2 tsp of salt straight, slowly let dissolve on tongue, typically helps tho.

    Tc ... x

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