Caffeine poll - safe or unsafe, helpful or unhelpful

[Jarod]

Hi folks,

Caffine. Something I'm very aware of. Long story.

Last year I worked, had to quit caffine completely because it just made me so fatigued, anxious, spaced out etc. It took many months to realize the benefit from quitting.

I later found out when trying methylation, one cup of caffine could throw off my methtylation for days. If I drank caffine for a month or so, it could take weeks to get methylation going again.

In my case, I suspect caffine causes excitoxicity and this results in some mild but cumulative nerve damage or something.

I'm also wondering if affects uptake of certain nutrients?

Stuff is addicting too. Makes it hard to quit.

I forgot to vote on PEM. I do have post exertional malaise.

i put down I can't touch the caffine, but I do anyway and pay for it.

 

[Bob]

I forgot to vote on PEM. I do have post exertional malaise.

I forgot as well, and I wrote the survey!!!

 

[John H Wolfe]

Along with alcohol, caffeine is a 'natural toxin' that has cropped up numerous times in my research as a no no; indeed this is born out by the experience of many PWME, including myself. From my protocol:

"Avoid stimulants: Including adrenaline packed computer games (as above), ME/CFS is a neuroendocrine disorder, we have enough problems as it is without adding a steady flow of adrenalin into the mix! Caffeine and other stimulants can stay active in the system for 12 hours or more and, besides interfering with natural bio-rhythms (vital for proper rest/repair), they often have irregular effects on those with ME/CFS or FM. All forms of caffeine are known to irritate the bladder and it can also contribute to blood sugar level instability"

In my hypothesis article I also suggest that such stimulants are unhelpful at the level of general overstimulation of systems such as the sympathetic nervous system - which plays an important role in the symptomatological expression of the illness

 

[Firestormm]

Along with alcohol, caffeine is a 'natural toxin' that has cropped up numerous times in my research as a no no; indeed this is born out by the experience of many PWME, including myself. From my protocol:

"Avoid stimulants: Including adrenaline packed computer games (as above), ME/CFS is a neuroendocrine disorder, we have enough problems as it is without adding a steady flow of adrenalin into the mix! Caffeine and other stimulants can stay active in the system for 12 hours or more and, besides interfering with natural bio-rhythms (vital for proper rest/repair), they often have irregular effects on those with ME/CFS or FM. All forms of caffeine are known to irritate the bladder and it can also contribute to blood sugar level instability"

In my hypothesis article I also suggest that such stimulants are unhelpful at the level of general overstimulation of systems such as the sympathetic nervous system - which plays an important role in the symptomatological expression of the illness

I know. We can all live in a bubble and not even try to experience the 'real world'. That didn't work for me. Trying things does. Nice protocol, John. If you live on the moon.

 

[Undisclosed]

Along with alcohol, caffeine is a 'natural toxin'...

Alcohol is more than just a 'natural toxin'. It is a poison, it causes lysis of cells. It can cause severe brain damage to a fetus when a mother drinks excess amounts. Drop a raw egg in alcohol, it will cook slowly.

As an advocate for children and adults with FASD, I think the term 'natural toxin' is erroneous -- coffee and alcohol are not in the same category of 'natural toxins'. One can cause mental retardation and is the leading cause of mental retardation in children.

 

[Bob]

I'd really like us to stick to personal experiences, on this thread, rather than introducing hypotheses and theories.
The poll strictly relates to personal and individual experiences with caffeine.
There is plenty of space elsewhere on the forum to discuss hypotheses etc.

Discussing hypotheses might lead to heavy and argumentative discussions, whereas the poll and this thread were intended to be a simple, light-hearted, and interesting (but non-scientific) insight into our individual experiences.

 

[golden]

Bob ,

Given the poll , and now realising I am not the only one - it startled me when I went to two different ME support groups - and I was ONLY offered Caffienated tea or coffee.... There was no alternative . I did feel excluded .

I found this really unhelpful and unsupportive for my health .

 

[Bob]

Bob ,

Given the poll , and now realising I am not the only one - it startled me when I went to two different ME support groups - and I was ONLY offered Caffienated tea or coffee.... There was no alternative . I did feel excluded .

I found this really unhelpful and unsupportive for my health .

People don't always think things through, and aren't always fully aware of all our sensitivities. I took a shop-bought quiche to a meeting with friends once, and I was (rightly) criticised (in a friendly way) for being insensitive to everyone's allergies. (I was in a rush, and just hadn't thought about it carefully.)

Like you say, at least this poll lets you know that you're not alone in needing non-caffienated drinks.

 

[golden]

It did make me feel better . yes.

But these are ME charity groups - with funding to support ME people .

I did mention it . Nothing was done . Upon supplying my own herbal tea bag - i became the odd ball .

I actually found it quite upsetting ha ha thats really silly but there you go! I guess it was the expectation of support and understanding .... NEVER have this then never get upset

The other place I have heard of providing coffee mornings for M.E. is part of the NHS CBT service .

That adds an additional problem for me since I suspect there are adrenal issues too which arent being tested for. And Coffee is being offered .

 

[Bob]

Upon supplying my own herbal tea bag - i became the odd ball .

Yes, I'm very familiar with that experience! I'm always taking my herbals with me when I visit people.

It can be a bit embarrassing at times, but people are usually fine with it, after a bit of gentle mocking!

And sometimes I have tea without the teabag (just milk and hot water), which is surprisingly fine, and not as horrible as it sounds!

Talking of herbal teas, there are only two herbals that I enjoy...

One is hibiscus. This brand (Hambleden Herbs - click here) is really tasty and fruity, and can be drunk hot, or left to cool down and drunk as a refreshing cold drink.

And the other one (Yogi Classic - click here) is a real tea substitute (for me, it tastes similar to tea). It's non-caffeine (there's no tea in it) and it's just very mildly and gently stimulating (from the spices). I like to have a lot of milk in it.

 

[Undisclosed]

I drink two cups of coffee every morning with no ill effects, it would be the third one that starts causing symptoms. I only drink instant because brewed has way too much caffeine. There are days when I can't drink it all and I am aware that it is one of those days right from the moment I wake up. I find caffeine helps drag my mind out of the murky fog in the morning.

Here's an old article from 2002 regarding caffeine -- http://www.sciencedaily.com/releases/2002/11/021119073402.htm

Interesting, maybe since I have been drinking coffee for over 30 years, I have developed a 'tolerance' to it.

 

[SOC]

I don't tolerate caffeine well at all. My BP and HR climb rapidly under good circumstances and caffeine only aggravates that. On rare occasions I have taken caffeine in tea/soda if I had something important to me that I needed to be not exhausted for at a bad time of day for me (graduation, wedding). It would make me feel more alert for a while, but the downstream consequences over the next few days were not good. I would be more tired, more quickly reach my AT (so less functional), and have a higher BP and HR for days. Overall not a good strategy except under very special situations for which I was willing to pay the consequences.

I've been off caffeine for about 6 years on the advice of multiple ME/CFS docs. For me, it's important to do so. I suspect that I "abused" caffeine for years (before diagnosis) as a way to keep moving when my body was telling me to rest. It was artificial energy for me. I felt better with caffeine, but I paid in the long run by pushing my body beyond it's natural limits.

 

[John H Wolfe]

We can all live in a bubble and not even try to experience the 'real world'. That didn't work for me. Trying things does

Fair enough. I'm not saying don't try things and find out if they work for you, I'm just saying that I've encountered issues with these substances, as have others, and that I've also come across a surprising number of reasons as to why they could be doing us harm/a bad idea

Nice protocol, John. If you live on the moon

Haha, thanks - I'll be sure to add that endorsement to my space-spiel when I go inter-galactic

Alcohol is more than just a 'natural toxin'

Agreed - I'm just reluctant to be too forthright with my terminology here, in case things get misinterpreted/political/I get jumped on by someone.. (again)

 

[golden]

Yes, I'm very familiar with that experience! I'm always taking my herbals with me when I visit people.

It can be a bit embarrassing at times, but people are usually fine with it, after a bit of gentle mocking!

And sometimes I have tea without the teabag (just milk and hot water), which is surprisingly fine, and not as horrible as it sounds!

Talking of herbal teas, there are only two herbals that I enjoy...

One is hibiscus. This brand (click here) is really tasty and fruity, and can be drunk hot, or left to cool down and drunk as a refreshing cold drink.

And the other one (click here) is a real tea substitute (for me, it tastes similar to tea). It's non-caffeine (there's no tea in it) and it's just very mildly and gently stimulating (from the spices). I like to have a lot of milk in it.

I dont mind hot water actually Just not the comments it engenders

I like loads of herbal teas - nettle tea , All the yogi teas , (Classic is good ) Ginger tea , Clippers Dandelion tea , the best popular fruity one is raspberry vanilla and ginseng All delicious, health boosting refreshments

 

[IreneF]

I love coffee. I drink between 2 and 4 cups daily. It's one of the few things that helps me, even though the effect is mild and doesn't last long. I've been drinking it for over 40 years.

 

[SOC]

I dont mind hot water actually Just not the comments it engenders

I like loads of herbal teas - nettle tea , All the yogi teas , (Classic is good ) Ginger tea , Clippers Dandelion tea , the best popular fruity one is raspberry vanilla and ginseng All delicious, health boosting refreshments

It's interesting that you guys catch flack for not drinking caffeine. I've never drunk coffee, although I often drank tea at business functions. Even then, herbal was often available. If not, hot water, milk, and sugar never raised eyebrows. No one ever commented on my choice of drink. Funny how some people need to comment on every little thing other people do, especially if it's different from the way they do things. Seriously, who cares about stuff like that?

 

[WillowJ]

my disease does involve prolonged post-exertional malaise, but I didn't read the question correctly at the time i was answering the poll (thought it was asking if coffee cause this for some reason) so didn't tick that box.

 

[Valentijn]

my disease does involve prolonged post-exertional malaise, but I didn't read the question correctly at the time i was answering the poll (thought it was asking if coffee cause this for some reason) so didn't tick that box.

Yeah, I did the same

 

[Bob]

lol, never mind. I forgot to click on it as well! So maybe we can just ignore the answers for that particular question. I was surprised at how low it was.

It's very difficult to analyse this survey anyway. We'd need to set one up on a specialised survey website, with more functionality, to properly understand the answers.