The Caffeine ME/CFS and FM Poll

[Cort]

There's something about caffeine for me.....It does something sooo striking that I think it must mean something. (It's similar to alcohol for me in that way..) What it is is that I often only need a few sips of coffee or tea to send me flying!

[fright]

[/fright]Talk about hypersensitivity....Unfortunately, I tend to get jittery afterwards and then feel depleted but when I'm on the upward roll my mind is clearer, I can think better and I have more energy...and it just takes a few sips. I can even get off on decaf...(and you should see me on coffee enemas!)

Unfortunately after the last one I did was so exhausted the next day that I could hardly move...So I tend to pick my spots with caffeine..

The other weird thing about caffeine is that when I'm really tired caffeine will do the opposite - it will knock me out.

What are your reactions to caffeine since you got ME/CFS/FM? Have they changed at all? And, as always, what does it all mean?

 

[ShyestofFlies]

I originally went off caffiene because it made my ocd and anxiety so much worse, gave me heart palpitations. I also couldn't tell if it had any effect. On my bad days I still needed to take naps and go to bed unusually early for me. Now when I take it I don't notice any difference, except sometimes I feel mentally stimulated but everything is still completely exhausted. I only get caffiene from chocolate and green/black tea now.

 

[Cort]

I originally went off caffiene because it made my ocd and anxiety so much worse, gave me heart palpitations. I also couldn't tell if it had any effect. On my bad days I still needed to take naps and go to bed unusually early for me. Now when I take it I don't notice any difference, except sometimes I feel mentally stimulated but everything is still completely exhausted. I only get caffiene from chocolate and green/black tea now.

Thanks - It's interesting that caffeine smooths me out at first...makes me more settled - then later when I come down I tend to get more anxious...

 

[Remy]

Caffeine is one of the most useful supplements I use...it blocks adenosine (the hibernation molecule) and perks me right up temporarily.

I definitely have to watch it though because it is a fine line between just enough and too much.

Supposedly green tea is better at smoothing out the highs and lows and I think that must be true because I can drink a lot of it and not notice the caffeine at all - either the positive or the negative on energy - independent of all the good EGCG.

 

[Seanko]

I would agree with the peaks & troughs associated with coffee...

However my normal brew is tea, when growing up in the UK coffee was rubbish so you had to go to France, Spain or Italy for something pleasant. These days every High Street (aka Main St) is awash with purveyors of coffee, cream & sugar.

As @Remy , mentions the up & down is more gentle as the caffeine content is lower. I normally have 1 or 2 cups a day depending on what I need to do. If I abstain for a few days then the caffeine hit is intensified. (The adenosine receptors, which are blocked by caffeine, reduce in number in the body so the effect of the brew is greater once you start drinking it again).

Part of the attraction of tea is the taking a break culture, it's not meant to fire you up for work. To limit caffeine intake, I'll take peppermint, another herbal tea or decaf to enjoy the moment.

 

[Veet]

Caffeine is one of the most useful supplements I use...it blocks adenosine (the hibernation molecule) and perks me right up temporarily.

Coffee has turned into a medicinal for me. I did not drink much for most of the years I've been unwell (cannot remember the specifics, but I was locked into wired-but-tired). Stopped altogether 4 years ago when I started diet and then methylation interventions. I resumed, initially 1/2 strength, about 6 months ago. This is when it appeared to have a very beneficial antioxidant effect (or so I assumed). Since then, I increased to full strength (organic, dark roast), and then to consistently 2 cups, early AM and about 4 hours later. Now I'm sometimes adding a 3rd cup, when the symptoms I associate w/ needing antioxidants, persist. I've been wondering since the ADP thread whether there's something beyond antioxidant effects. My body does not give a + reply to green tea through the day (500 ml AM/PM), but does for coffee. I don't drink black tea due to fermented process. Yesterday this 3rd cup was at 2PM, something I'd have dreaded for poor sleep. However, it makes my body feel better, and has no effect on my sleep. something very interesting happening here.

 

[Cort]

Caffeine is one of the most useful supplements I use...it blocks adenosine (the hibernation molecule) and perks me right up temporarily.

I definitely have to watch it though because it is a fine line between just enough and too much.

Supposedly green tea is better at smoothing out the highs and lows and I think that must be true because I can drink a lot of it and not notice the caffeine at all - either the positive or the negative on energy - independent of all the good EGCG.

There you go - a possible mechanism!

One other thing it does - it's a little libido booster - would that it were more - but hey I appreciate what I can get...

A fine line indeed...

 

[Cort]

I would agree with the peaks & troughs associated with coffee...

However my normal brew is tea, when growing up in the UK coffee was rubbish so you had to go to France, Spain or Italy for something pleasant. These days every High Street (aka Main St) is awash with purveyors of coffee, cream & sugar.

As @Remy , mentions the up & down is more gentle as the caffeine content is lower. I normally have 1 or 2 cups a day depending on what I need to do. If I abstain for a few days then the caffeine hit is intensified. (The adenosine receptors, which are blocked by caffeine, reduce in number in the body so the effect of the brew is greater once you start drinking it again).

Part of the attraction of tea is the taking a break culture, it's not meant to fire you up for work. To limit caffeine intake, I'll take peppermint, another herbal tea or decaf to enjoy the moment.

Hey Seanko - has coffee taken over tea in the UK or is does tea still reign supreme?

 

[Cort]

Coffee has turned into a medicinal for me. I did not drink much for most of the years I've been unwell (cannot remember the specifics, but I was locked into wired-but-tired). Stopped altogether 4 years ago when I started diet and then methylation interventions. I resumed, initially 1/2 strength, about 6 months ago. This is when it appeared to have a very beneficial antioxidant effect (or so I assumed). Since then, I increased to full strength (organic, dark roast), and then to consistently 2 cups, early AM and about 4 hours later. Now I'm sometimes adding a 3rd cup, when the symptoms I associate w/ needing antioxidants, persist. I've been wondering since the ADP thread whether there's something beyond antioxidant effects. My body does not give a + reply to green tea through the day (500 ml AM/PM), but does for coffee. I don't drink black tea due to fermented process. Yesterday this 3rd cup was at 2PM, something I'd have dreaded for poor sleep. However, it makes my body feel better, and has no effect on my sleep. something very interesting happening here.

Congratulations Veet.....that all sounds good. I've never been able to really enjoy coffee to its fullest obviously because I'm so hypersensitive to it. I do love the taste, though.

 

[Cort]

I met someone several years ago who swore that caffeine pills were central to her recovery! So long as she didn't overdo they boosted her energy bit by bit...

 

[Paw]

I've been wondering, since I got sick, why caffeine has been the only stimulant I can tolerate with some regularity in normal doses. Other stims invariably lead to "fluey" days.

 

[Upgrayedd]

I wish I could take caffeine - it seems like it would be a wonder drug for fatigue. But I've never done well with caffeine - gives me brain fog, jitters, heavy headed feeling. It only got worse after CFS/ME.

Recently, I took advantage of an open minded doc and tried other stimulants as treatment options for the fatigue and fog: Adderall, Vyvanse and Nuvigil. The Nuvigil was the most innocuous - didn't do much except make insomnia worse. But the true stimulants were like coffee only worse - I'd get buzzy and jittery for a few hours, and then crash and feel worse than I did when is started the day!

I just can't do stimulants, whether it's caffeine or something else.

 

[Cort]

I wish I could take caffeine - it seems like it would be a wonder drug for fatigue. But I've never done well with caffeine - gives me brain fog, jitters, heavy headed feeling. It only got worse after CFS/ME.

Recently, I took advantage of an open minded doc and tried other stimulants as treatment options for the fatigue and fog: Adderall, Vyvanse and Nuvigil. The Nuvigil was the most innocuous - didn't do much except make insomnia worse. But the true stimulants were like coffee only worse - I'd get buzzy and jittery for a few hours, and then crash and feel worse than I did when is started the day!

I just can't do stimulants, whether it's caffeine or something else.

I'd like to try those stimulants as well. Synergy is testing I think adderall??? in combination with supplements. They've gotten some good results in some patients. I don't know if it would help you but the side effects do go down I believe. It's still in its testing phase though.

 

[IrisRV]

I suspect stimulants like caffeine could be bad for us if all they do is make us feel like we have more energy than we do. Masking the problem doesn't improve it and can cause you to do yourself more harm.

However, if the real effect of the stimulant is to deal with some types of cognitive problems such as sleepiness, inattention, fog (whatever that really is), then it could be a bonus for us.

So what is it caffeine does, exactly? That might be the best indicator whether it's likely to be helpful or harmful.

I can't do coffee for various reasons, but other forms of caffeine don't do much for me. It certainly doesn't help if I take it on a regular basis. On the rare occasion that I can't get out of something but I'm exhausted, I resort to a can of soda. Tea doesn't do it. The sugar and caffeine get me through a few hours, but there's always a price to pay afterwards.

I would be delighted if some researcher would sort out the various things we are calling 'fatigue'. I think we'd be much better able to discuss our illness and what helps and what doesn't help.

I've heard the following things described as 'fatigue' (I'm sure there's more), but I believe some are very different physiologically.

• sleepiness
• brain fog
• inattention, lack of focus -- the need of a stimulant in the way people with ADD need a brain stimulant
• depression
• POTS episodes, reduced blood flow to the brain or other vital systems -- not related to energy production issues
• inability to produce sufficient energy and to recover from the drain of energy stores

I can see caffeine helping with the first three, but not the last three.

 

[Remy]

I suspect stimulants like caffeine could be bad for us if all they do is make us feel like we have more energy than we do. Masking the problem doesn't improve it and can cause you to do yourself more harm.

However, if the real effect of the stimulant is to deal with some types of cognitive problems such as sleepiness, inattention, fog (whatever that really is), then it could be a bonus for us.

So what is it caffeine does, exactly? That might be the best indicator whether it's likely to be helpful or harmful.

I can't do coffee for various reasons, but other forms of caffeine don't do much for me. It certainly doesn't help if I take it on a regular basis. On the rare occasion that I can't get out of something but I'm exhausted, I resort to a can of soda. Tea doesn't do it. The sugar and caffeine get me through a few hours, but there's always a price to pay afterwards.

I would be delighted if some researcher would sort out the various things we are calling 'fatigue'. I think we'd be much better able to discuss our illness and what helps and what doesn't help.

I've heard the following things described as 'fatigue' (I'm sure there's more), but I believe some are very different physiologically.

• sleepiness
• brain fog
• inattention, lack of focus -- the need of a stimulant in the way people with ADD need a brain stimulant
• depression
• POTS episodes, reduced blood flow to the brain or other vital systems -- not related to energy production issues
• inability to produce sufficient energy and to recover from the drain of energy stores

I can see caffeine helping with the first three, but not the last three.

Caffeine displaces adenosine which in excess causes HPA axis changes and induces hibernation.

So it's not just a band aid, flogging a dead horse like some stimulants even though it's not exactly the root cause either. Why do some of us have too much adenosine? Million dollar question.

https://www.sciencedaily.com/releases/2011/07/110726190101.htm

http://blogs.scientificamerican.com/scicurious-brain/fighting-stress-with-adenosine-antagonists/

 

[Upgrayedd]

I'd like to try those stimulants as well. Synergy is testing I think adderall??? in combination with supplements. They've gotten some good results in some patients. I don't know if it would help you but the side effects do go down I believe. It's still in its testing phase though.

I tried pairing Adderall with klonopin (not that that's a very sustainable pairing long term), phenibut, Picamilon, theanine, etc. Didn't help much. I just don't do well on stimulants.

I actually love coffee, but I stick to decaf. I can usually tolerate that.

 

[lisaadele]

I can't tolerate caffeine or other stimulants. Even before getting sick I was sensitive but worse now. I like coffee but now can only have one decaf. Sometimes if I 'm being wild and crazy, ...ha, and have a second decaf I usually regret it.

 

[Lissa]

My experience with caffeine has varied over the years. In college (late 80's - which was also my 2nd bout of mono), the first time I ever drank coffee it made my heart pound. WAAAAY too much stimulant for my system. The only time I could drink it was to pull an all-nighter. And even then I'd sip it slowly - not to mention it was one of those fancy powdered versions that was part sugar and part cocoa that came in a rectangular tin. Not really even full-test "real" coffee. As I recall I was the "weird" one -- nobody else could fathom that I reacted that strongly.

Then I went the next 20 some years without drinking any coffee at all.... ever. No soft drinks, etc. My only source of caffeine would be chocolate. (Yep - I'm a chocoholic!) Then I met my husband and started drinking coffee with him on weekends. Always 1/2 caf and just 1 cup. It just plain tasted good! I don't recall a breaking in period really. As long as I didn't have much, I didn't have the heart palpitations.

Around that time, my career had gotten quite stressful with lots of travel. I found myself (2005) working in Australia for a month spending literally every day -- for 9 or 10 hours/day in a car, collecting data for digital mapping. It was beyond exhausting, especially for 3 weeks with no time off, and different hotels almost every night. (Seriously.... every evening I would just fall down after dinner and go to bed, while others stayed up partying.) I started needing to drink coffee at breakfast and then at least 1 or 2 more cups by the afternoon. I couldn't stay awake on the job! Even though it was an amazing adventure - it totally burned me out physically.

After returning and recovering from that crazy trip, I started drinking more coffee to get me through each work day. I'd have an extra cup in the afternoon if it was a particularly hard day. I needed the buzz to stay on top of things --- until things really unraveled and I became fully disabled (in 2010) with ME/CFS after a long, flu-like respiratory infection.

Then last year, when visiting family and friends for the holiday, I drank coffee not knowing that it was full caf. I wasn't thinking about it at all, other than I needed a boost to make it through the day. So I had almost 3 cups that morning, thinking I was making up for it being low-test.... After eating a big piece of chocolate cake later, my HR monitor rocketed up into the 170's while I was just sitting at the table. YIKES! I guess caffeine still has a crazy effect on me!

Today I tend to drink 1 cup of 1/2 caf almost every morning and it seems just right to keep me up and running. Which equates to being able to alternate between doing a few easy things and then resting on the couch. Hopefully it isn't a false boost that is ultimately sapping my energy....

 

[Cort]

My experience with caffeine has varied over the years. In college (late 80's - which was also my 2nd bout of mono), the first time I ever drank coffee it made my heart pound. WAAAAY too much stimulant for my system. The only time I could drink it was to pull an all-nighter. And even then I'd sip it slowly - not to mention it was one of those fancy powdered versions that was part sugar and part cocoa that came in a rectangular tin. Not really even full-test "real" coffee. As I recall I was the "weird" one -- nobody else could fathom that I reacted that strongly.

Then I went the next 20 some years without drinking any coffee at all.... ever. No soft drinks, etc. My only source of caffeine would be chocolate. (Yep - I'm a chocoholic!) Then I met my husband and started drinking coffee with him on weekends. Always 1/2 caf and just 1 cup. It just plain tasted good! I don't recall a breaking in period really. As long as I didn't have much, I didn't have the heart palpitations.

Around that time, my career had gotten quite stressful with lots of travel. I found myself (2005) working in Australia for a month spending literally every day -- for 9 or 10 hours/day in a car, collecting data for digital mapping. It was beyond exhausting, especially for 3 weeks with no time off, and different hotels almost every night. (Seriously.... every evening I would just fall down after dinner and go to bed, while others stayed up partying.) I started needing to drink coffee at breakfast and then at least 1 or 2 more cups by the afternoon. I couldn't stay awake on the job! Even though it was an amazing adventure - it totally burned me out physically.

After returning and recovering from that crazy trip, I started drinking more coffee to get me through each work day. I'd have an extra cup in the afternoon if it was a particularly hard day. I needed the buzz to stay on top of things --- until things really unraveled and I became fully disabled (in 2010) with ME/CFS after a long, flu-like respiratory infection.

Then last year, when visiting family and friends for the holiday, I drank coffee not knowing that it was full caf. I wasn't thinking about it at all, other than I needed a boost to make it through the day. So I had almost 3 cups that morning, thinking I was making up for it being low-test.... After eating a big piece of chocolate cake later, my HR monitor rocketed up into the 170's while I was just sitting at the table. YIKES! I guess caffeine still has a crazy effect on me!

Today I tend to drink 1 cup of 1/2 caf almost every morning and it seems just right to keep me up and running. Which equates to being able to alternate between doing a few easy things and then resting on the couch. Hopefully it isn't a false boost that is ultimately sapping my energy....

The three cup test! I literally cannot imagine what that would do to me. I wonder if I would end up in the emergency room (lol) I just had two sips of Youthberry tea - a mildly caffeinated white tea at Starbucks = and I am flying!!!!

So long as you're getting the same boost every morning I imagine that that half cup of joe is not doing any harm. For me, when caffeine depletes me the next day coffee just puts me to sleep. If you're stable with it I imagine its fine.

The inventor of the synergy protocol believes that a little caffeine - in combination with the right nutrients - is actually helpful = it's gets the cells going.

 

[Lissa]

The three cup test! I literally cannot imagine what that would do to me. I wonder if I would end up in the emergency room (lol) I just had two sips of Youthberry tea - a mildly caffeinated white tea at Starbucks = and I am flying!!!!

So long as you're getting the same boost every morning I imagine that that half cup of joe is not doing any harm. For me, when caffeine depletes me the next day coffee just puts me to sleep. If you're stable with it I imagine its fine.

The inventor of the synergy protocol believes that a little caffeine - in combination with the right nutrients - is actually helpful = it's gets the cells going.

Youthberry Tea! Never heard of that one. Is that for real or a Starbucks concoction? (Perfect post-coffee emoji by the way! Thanks for the laugh!)