Has anyone noticed a relationship between caffeine and their fibro symptoms? I normally guzzle black tea most of the day.(No milk or sugar.) I don’t really keep track of how much of it I drink. Today, I decided to avoid it all day just to see what would happen. So far, it seems like my pain symptoms have dropped substantially. They’ve dropped more as the day has progressed. The pain change could be completely coincidental, however. I’m not seeing much online to suggest that there is a definite association between caffeine and fibro symptoms. I’m just curious about other people’s experiences.
Hi Crafty
I went to the Dr Friday and he wants me to slowly stop caffeine. I did this a few years ago and could tell a big difference in how I felt.
It’s so weird. I mean, there doesn’t seem to be much research to explain why caffeine would be problematic for some people. I’ve lowered my caffeine intake for two days now and I feel like a different person. I’m trying to keep myself to no more than one massive cup of tea per day. I may eventually ween myself off of that, but I typically drink hot black tea all day. I guess I never really let it get out of my system.
I function on caffiene, it gets me through the day and keeps me from crashing. I don’t find any difference in pain - in the summer months/weather I function much better and can do more. This time of year I am a mess - I know it’ll be like this until spring. The pain is incredible - caffiene is my drug of choice I guess…well that & amitryptiline.
It’s weird how differently people’s bodies can react to things. I even noticed a mood change when I lowered my caffeine.
@Crafty I have a huge problem with caffeine and reactions with my fibromyalgia. If I even drink a quarter bottle of anything caffeinated Im down for the count. Once I got rid of it from my life I was able to function some better. I’ve looked for links between it but I haven’t found much in any research but I definitely noticed a dramatic difference once I quit caffeine.
How funny! I haven’t cared for coffee all my life (nearly 50) but I’ve had three doctors tell me I should… What the heck?
I see the studies. Every few years a study will come out saying how good or bad coffee is. To me, the biggest negative is the addiction factor. I recently started drinking coffee (it actually tastes good when you put in a bit of butter or coconut oil, then some half and half, then some local, raw, wildflower honey (for medicinal purposes, of course.) I think of it as breakfast dessert.
I first tried drinking it every day but one morning, two weeks in… I woke up feeling just awful. I’m a morning person and I never wake up feeling bad, it comes on throughout the day. I drank the coffee and felt immediately better. It freaked me out so much that I didn’t drink coffee for 6 months. I have been physically addicted to cigarettes, sugar, Lyrica and Ambien and I absolutely do not want to ever be addicted to anything again. I seem to get the worst detox symptoms - probably because of the fibro.
My sister told me that she alternates between tea and coffee - what a great fix! So, that’s what I’ve been doing. I don’t drink coffee for more than three days in a row, and drink tea more often than not because that coffee is a lot of work…
The pain being coincidental is really the thing, right? Who knows? That’s probably the suckiest thing about Fibro. Trial and error isn’t the most reliable thing…
What else is there?
Exactly…
Hi Crafty,
I used to drink plain iced tea (no sugar) all of the time. I didn’t notice a change when I stopped drinking the tea except that I didn’t have the caffeine boost of energy, but no difference pain-wise. However, I think we all have our triggers. I am glad that you found one of yours so that you can avoid it.
Take care,B1
I have cut my caffeine down significantly; I just have to have one cup of coffee in the morning, but that is pretty much it. I may have half a soda during the day, but I did not notice any changes. The change that I noticed the most, was cutting out the sugar; that really seem to help me. I think it is just a matter of trying a whole bunch of different things to see what works out. It took three years just to get my meds right. I do not eat a lot of meat, especially red meat and I also avoid fried foods and microwaved type foods. I think a healthy diet helps do along with mild exercise; whatever you can tolerate. My doctor told me that psycho (talk) therapy really helps, too. I always knew that having pain caused me to be depressed, but I never knew it worked the other way around. I started seeing a therapist last week and I felt much better. I have also been doing acupuncture, which I love, and chiropractic. We are all different and whatever makes you feel better, please keep doing it and sharing! We all learn from each other. Thank you!
Hi crafty. My caffeine intake doesn’t make any difference to me whatsoever. I can’t recall seeing anything about caffeine vs fibro. But nice to know that you have discovered something to avoid that cause you more pain. Take care 
Hi, myself, my sister and my mom all had pain problems from black tea. My understanding is it is an accumulation of tannins. I felt it on the outside of my right shoulder, my sister and mom in their heels. We can drink just one cup. I am currently reading The Fibro Manual by Ginvera Liptan M.D., I’m learning quite a bit. I highly recommend her book. I would really like to hear from anyone else who is reading it. Wishing everyone less pain and better sleep 
Wow. This is fascinating, 10k. I had never heard of tannins. So, you’re not allowed to even decaf black tea throughout the day? Since I gave up the caffeine, I switched to decaf black tea. It sounds like I should consider cutting back on that as well. I think I just find it comforting.
From what I can tell, I seem to have an increase in pain almost immediately after drinking one cup of caffeinated black tea. I tried switching to one cup a day just to get me through the morning, but it seems to have an almost immediate effect on me. If I avoid it, my pain drops dramatically. The downside is that I’m exhausted all day.
I too have exhaustion all day, then I get that ‘wired but tired’ feeling when I should be sleeping. I’ve just started using supplements for adrenal fatigue… fingers crossed but I’m seeing some relief. I mention this because I think caffeine has a negative effect on already tired adrenals. The Fibro Manual book has a lot of info on adrenals. She explains that fibro suffers have had the fight or flight switch flipped on and our bodies never get to rest, so with that in mind for you maybe the caffeine is just too much for your body to handle… have a beautiful day💜
I dont drink beverages with caffeine hardly at all. So I can day that for me there is no relationship between the two. I wish for me that was the case. I would so so so cut the caffeine out to habe a decrease in pain.
I was drinking 2 cups of coffee in the morning (really only 1 1/2 cup) with cream but no sugar. I switched to drinking dandelion tea for my second cup and that has been fine. I enjoy my one cup of coffee. I haven’t noticed any difference but if I drink more than 2 cups I feel like crap.
I din’t notice any difference and I drank a lot of caffeine. I realized I was fooling myself thinking the caffeine would take care of the fatigue. It never did.