Caffeine for Fibromyalgia & Chronic Fatigue Syndrome

I think my body tries to tell me caffeine is no good for me, because for equally as long as I’ve lived with FM, I’ve felt sick after drinking cola, coffee, tea and even eating chocolate. If I do, I not only feel ill but my crash is huge – almost like a hangover (although I also don’t drink alcohol). So, it’s out if my diet, for the most part!

I don’t have any real problem with caffeine. I need it some days to get through the day. As long as I don’t drink it after 4pm, otherwise I’m awake all night. My pain and fatigue otherwise don’t vary depending on the quantity of caffeine.

I have cut out caffeine in coffee and cold drinks for 2 yrs. In that time I have not noticed any difference to pain and fatigue levels. I have since re introduced it on an ad hoc basis but never more than 1 cup a day and never after 2pm. I find with this more relaxed approach I don’t crave the caffeine and don’t notice any majors syptoms and get a burst of energy when needed. I must mention that I noticed if I have a very sweet dessert late at night, or high sugar snack I feel the crushing fatigue together with other nasty symptoms. Any feedback on that? I am now limiting sugar but this one is really difficult for me and my sweet teeth.

I am a coffee and tea drinker but not soda. At least soda very rarely. I have stopped drinking both of these for a period of 3 months and have not noticed any change (for me that is) in pain or fatigue levels. I am also one that coffee does not “energize” or “hype” me up. It is like anything else in our diets and that is moderation. I truly believe it falls upon the individuality of the persons body and how it reacts. Now, if you want to talk about what anything with aspartame in causes me whew that is whole other can of worms lol…great article thanks for writing it.

My self worth is so tied to success that if I drink caffine and get something done, I feel better. I can ignore symptoms of FM when I am working. I generally drink a cup of coffee in the morning and use soda as a treat in the afternoon if I am not taking a nap – another topic.
The soda improves my mood and makes it possible for me to make a healthful supper rather than throwing a frozen pizza in the oven. Overall, I think it benefits me.

Give up coffee????!!!!!! NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!
There must be another way surely?!

I am newly diagnosed with Chronic Fatigue Syndrome and reading tips to cope with interest (as well as trying them and writing my own blog from the UK http://www.copingchronicles.blogspot.com ) but I cannot even imagine a life without my beloved coffee.

How would I move in the morning and post-lunch without it?!!

My body is definitely addicted to caffeinated coffee.

I drink it all day long.
If I don’t get it, the headaches become intolerable.

Other forms of caffeine bother me though – such as caffeinated green tea, sweet tea, etc.

Just made my first home-made ice coffee since I could not get to Dunkin Donuts today, French Vanilla, YUM!

One thing I HAVE noticed in regards to my fibro – If I use real sugar, I have to get ready for a flareup.
I can only use Splenda, other artificial sweeteners hurt me as well.

I don’t really mind the caffeine crash either, at least it makes me tired enough to sleep a little bit and ignore the pain.

No caffeine for me, except chocolate. I feel way better without, and it is easier for me to sleep. Gabapentin has also helped me sleep. The swollen glands under my jaw and the sore throat have almost disappeared since taking that med. On the other hand, I have been taking a lot of naps with my dog. Cheers friends. Mary

Just to back up Adrienne’s suggestion there is a lot of very good de-caffeinated coffees available. Most of the dramatic health benefits of coffee (and other berries) appear to come from the many other compounds in this wonderful berry.

I wouldn’t be without my morning coffee. It acts as a pain killer for me…plus I like the taste. I never drink it late in the day or evening though.

I really noticed the difference when cutting out caffeine.
It did take a week to get over the withdrawal headaches, but once I had, I found I could get through the day better than when I was addicted to coffee every time I felt a bit fatigued.

It’s now been 3 months since I regularly had caffeinated coffee – I drink decaf instead and fortunately my favourite coffee brand has a really good decaf. I also cut down from 5 cups a day to (usually) no more than 3.

When I do inadvertently have caffeinated coffee, I really notice the effects the following day when my fatigue gets much worse.
I’ll be sticking with decaf!

I switched from quadruple mochas to decaf soy mochas. When I realized I was choking down the chalky mixture, I switched to green tea…I really didn’t notice any difference but that may have been from the gradual decrease in caffeine as there was still some in the decaf espresso, some in the chocolate in the soy milk and some in the green tea.

Now I’ve returned to caffeinated coffee, but I have one cafe au lait in the morning. I honestly don’t think I’d have any reason to get out of bed if it wasn’t for that coffee craving. If I need a pick me up during the day, I drink a cup of Moroccan Mint tea which has green tea in it. I think I have much milder FMS symptoms than the other members of my online support group, so I’m sticking with my caffeine habit for now.

Aspartame and MSG both are poisons to my body…if I accidentally ingest either I have such weird reactions that I really want to die. Caffeine is mother’s milk by comparison.

Decaf coffee isn’t for everyone. The chemicals used in the process of decaffinating coffee can be harsh if you have chemical sensitivities. And, in my case, caffeine keeps me from having migraines. Doctor’s orders! Two cups a day.

The rest of the time I drink white or green tea. Sodas? Well, a fond memory, but the carbonation does nasty things to our livers (I’ll get on that soap box!). If I have to take pain medication I want to protect my liver in other ways. I switched to 70% dark chocolate, minimizing sugar, and am satisfied with that change.

I’ve had fibromyalgia for thirty years. For at least twenty years, I couldn’t have much if any caffeine because it’d give me panic attacks. Several months ago, I accidentally had coffee with caffeine, and I was fine. So, I started drinking one cup a day, and it seemed to help with my first-morning fibro stuff. Then, as I started needing some readjustments on my many-years thyroid replacement therapy, I started noticing that the caffeine was throwing me into a kind of hypoglycemic down. My body would crash big time in addition to the fibro pain. So, no more caffeine for me again (as of last week). That’s helped with the crashing (and finishing getting my thyroid pack on track will help a lot too).

Addrienne, your statement that caffiene is “like an energy credit card with a really high interest rate” really got my attention. I have struggled against the very thought of eliminating caffiene in my diet because I so desperately need and want the energy it provides. But you’ve made me think again about this issue and I may start trying to cut back on my coffee and tea. Thanks for your timely articles.

I`ve had fibromyalgia ( at least, that I know of ), for about seven yrs. Today, I`m having a really bad day…I feel almost like I have the flu, but I know that it`s the fibro. I have been looking to coffee & tea to help boost energy for some time, even though, Ive never considered myself a caffeine-lover. I`ve enjoyed reading the other comments, realizing , there are those who feel the way I do. Fibro is sometimes a fooler to on-lookers…we may look pretty healthy, while feeling terrible! Thank you for sharing some things to avoid to make life a little more bearable!

I’m like you. I was forced stop drinking tea for the 110 days I was in the hospital. Definitly better with tea.

We did an elimination diet recently (mainly for my daughter’s sake), on the Failsafe diet (no salicylates, glutamates, amines, no herbs or spices, no food preservatives, colourings etc – VERY BLAND!) and caffeine and tea (of all types) were among the things we had to drop.

I discovered two things from the diet (and I wasn’t expecting to see any improvement in my fibro symptoms). Firstly, having caffeine does upset my tummy, my IBS symptoms seem to abate when I’m off it, and get worse when I try it again, even in chocolate. I’ve gone from having 4 to 6 cups a day of tea, to drinking 2 or 3 cups of weak decaf coffee or tea a day.

Secondly, I have had dreadful brain fog since having major hip surgery 8 months ago, nothing seemed to help – but being on the elimination diet made it clear almost completely! My doctor thinks that the heavy duty anaesthetics and narcotics I was on during and after surgery were still affecting my system, and the “low chemical” elimination diet helped to reduce other stresses on my body so I could recover more quickly.

I don’t need to stay on the diet long term, thank goodness, but I certainly will go back onto it when brain fog gets in the way again. And I’m staying off caffeine.

As for sugar, my doctor has confirmed that a food allergy can cause issues with both FM and RA. I found I can use Beet Sugar with no problem. I buy it at a health food store. Most sugar is cane sugar and that seems to be problematic for me, as well as HFCS.

This is very timely for me as well. I have been thinking about caffeine a lot for the past several weeks. I have CFS, and it really does help me in the short term, no doubt about it. I like the “lift”, I can get physically moving, and I often get a little more “brain-clarity”. But often by mid-afternoon I am a mess. My blood sugar crashes, I can’t take a nap, and then by evening I feel really bad. Sometimes my anxiety worsens and I find myself taking more of the Klonapin that I use for sleep… and then the cycle starts again the next morning. After a few days of this I’m in real trouble: my fatigue is profound, my pain has increased, I am back in bed for a day or more. The caffeine enables me to do more, but there is always a price to be paid for “pushing”. Also, we all know that ALL stimulation has an effect on us (light, noise, etc) and this is stimulation that we are directly putting into our body… revving up our nervous systems. Obviously some of us have no problem with caffeine… but I see that I do, and I plan to use it very judiciously… only as medicine, and only on rare occasion.

I’ve drunk coffee for years, and been diagnosed with FMS for not quite a year (though I’ve likely had it for 3). Pre-fibro, I could drink coffee any time of the day or night and it had no effect on my sleep. In fact, dessert and coffee after dinner seemed to help me sleep better. Now I can’t drink coffee after 4pm or the anxiety in the evening ratchets way up.

I have been up and down with the caffeine thing. I think for me, mild caffeine like in green tea or decaf coffee is fine, and occassionally a pepsi/coke for brain fog (temporary relief). If I drink a lot of caffeine though, it definitely messes me up a lot. I just have go gauge on when I start shaking. If I am having a day where I am shaking a lot, I avoid caffeine all together. Otherwise, the benefits of tea outway the risks of the caffeine in it.

Oh yes and I want to agree with everyone that sugar and aspertame both have worse side effects for me than mild caffeine. I’m at a point now where I can say soda is un-appetizingly sweet for me unless of a brainfog/migraine emergency. Kill the sugar. Just look at the bottles and cans and nutrition facts and you can find ways to get your sweet without all that … crud…

I never get a hit/lift from caffeine, even when I have it in the evenings or even right before bedtime! and have had no decrease in fibro/cfs symptoms when I’ve gone to decaf so I’m sticking to coffee! Now artificial sweeteners are a whole another ball game! I mostly have coffee without sugar but occasionally have a Latte and put a single spoon of brown sugar in it without seemingly being ill-affected.

I tried leaving out caffeine for over a year. At first it didn’t seem to matter, then it seemed I actually needed it. I drink iced coffee and I have to confess I drink wayyyyy too much of it in a day, but the caffeine helps with pain symptoms. It allows me to cut down on opiods and I’d much rather be hooked on caffeine than morphine. One bad side effect – if you are prone to systemic yeast infection or epidermal skin infection, coffee is NOT your friend. Neither is sugar, but that’s a whole other subject. Thanks for listening! I hope you all have lots of wonderful pain-free days!

I think one of the reasons people with CFS are drawn to coffee is because of its ability to boost dopamine/endorphin levels in the brain. People with CFS freguently have low levels of the neurotransmitter dopamine. Dopamine/endorphins can act like a brake and help with pain syndromes. I have personally found that one or two mild coffees in the morning helps me with my symptoms; more than that will just make me anxious. Probably because my brain is out of dopamine and I’m running on empty!

I’m 21, I have had CFS for 2 years. I gave up caffeine for 6 months and I can honestly say that it made no difference. I still limit my caffeine to an iced tea once or twice a week but I really do not think that caffeine has negatively effected my CFS.

Mary, You say you had swollen glands under your jaw line. I get this. I thought I had a pain in my jaw but have now realised that it is when small glands are up. Did you ever get told why this was. As I have had bloods done and nothing has ever showed up.
As for coffee and chocolate. They both sometimes make me feel really unwell.Not all of the time though. It is weird.
Thanks. Lin

Hi all, I am no doctor, but have lived with chronic pain and fibromyalgia for 10+ years and study it, in every spare minute. What I do know is, that caffeine is a known inflammatory, meaning it “relates to, or causes inflammation in the body” so, it’s best to reduce it or eliminate completely, or as much as possible (within reason … you still have to have a life)

Im really new to all of this fibromyalgia stuff. I just got diagnosed about 4 months ago, although i suspect that ive had it longer. i can recall problems as far bacjk as my early twenties(im 37 now). my sister has ms an yrs ago i was being checked for that also but i got frustrated with trying to get results from my dr, so i never got a clear answer. my sis and i have alot of the same issues. im still getting more tests done and start p.t. next wk. can anyone giv me ANY info on the situation, im totally lost. drs only help as much as insurance lets them.

I do not have the energy to read all the comments but was surprised how many of the ones I did read seemed to have no effect from the caffeine or who elt they could not unction without it. Coffee has a very definite effect on me. It makes me more sleepy! I still drink but only a couple of very (less than 1/4 teaspoon) weak cups a day. I found this when I was in remission and driving 400miles to see my parents. I tried drinking coffee stronger than usual and also tried energy drinks and proplus. I had trouble staying awake at the wheel after!! I can drink Coffee last thing at night and still have no trouble getting to sleep. My theory is that it gives me a very intense adrenaline rush so ast I don’t notice it and then I get the exhaustion almost immediately after. I have had ME/CFS for 20 years but was only diagnosed 5 years ago and am currently undergoing tests to see if I have fibro too. So does anyone else get exhausted by caffeine? oh on another note I get bag headaches which nothing touches! the other day someone gave me paracetamol plus which is paracetamol and caffiene and it cleared it! was it a coincidence? no the next time I woke up with such a headache I took them and it went! Usually the only thing that could clear it was to go back to bed.

i am a healthy person and it always surprises me how depleted i feel after a week of drinking one cup of coffee in the morning. i stop drinking the coffee, and suddenly get my energy back. its interesting- the individual differences expressed when it comes to this controversial little bean.

I had a cup of coffee for the first time in probably 2 years today after reading of coffee’s health benefits. I am feeling headachy and jittery at the moment (I took it an hour ago), and it immediately gave me bad breath even after cleaning my teeth. I’d rather get health benefits from white tea (which has the highest level of antioxidants, but still has the least amount of caffeine of all the teas). I have CFS and FM and get the swollen glands and sore throat often too, especially in the mornings, but am on pyridostigmine bromide (prescribed by my rheumatologist) which seems to help the FM symptoms. Chai lattes are my friend. Also I don’t have problems with hot chocolate – when I am in pain, I’ll drink one and it helps without giving me the jitters. Peppermint tea helps to reduce my puffiness and bloating, and I like Sleepytime tea too at night (contains chamomile & peppermint mainly I think). I drink Salvital twice a day to keep my blood pressure up as advised by my endocrinologist.

Aspartame is definitely not my friend – MSG rates a close second: I feel dreadful after drinking diet soft drinks or food with added MSG (flavour enhancer 621). Dr Oz advised people with CFS not to have caffeine amongst other things, and after my experiment I agree. Also your body adjusts to the caffeine content and you will feel tired if you don’t have it and will end up needing it for you to feel awake. Yeech. My mouth tastes awful. Antidepressants (generic Prozac) helps me with pain, and hydralazine helps me with brain fog A LOT. Also I can’t touch a drop of alcohol without it affecting me badly (usually makes me groggy at first and at night I wake up with my heart pounding). So I’m going to revert back to no coffee, and keep having no alcohol and no apartame and no MSG. By the way, MSG is added to and hidden in a lot of processed foods here in Australia, such as most soups, savoury biscuits, crisps, pies, pasties, sausage rolls, and a lot of other savory stuff, and is notoriously bad in Chinese takeaway and added to sauces, etc. Added MSG makes me overheat and wake up with a gluey feeling in my head. I first noticed it as a teenager (I am now 40) when I ate a whole box of Cheezels (but I notice it with very small amounts now). You have to read the ingredients list, because a lot of crisps, Doritos, Pringles, etc. will have it in it but some supposedly “healthy”snacks will tell you they contain no artificial colours, flavours or preservatives, and yet contain flavour enhancers which are well-known for causing symptoms in people with CFS and FM (as well as aspartame a.k.a Nutrasweet, (ingredient # 951)).

i have been a heavy coffee drinker for many yrs. i dnt have a problem with the coffee, i have tried being off the caffine and found that it makes no difference to me. i take cymbalta, gabapentin, tramadol, omeprezole, flexeril and naproxen. i dont feel that they help me much. im still in alot of pain and the side effects make me worse. i also have major depression and alot of times i have trouble getting my point accross. i always get bad headaches, with or without coffee. also, i am a 1 pack a day smoker. i have been warned that the smoking with the coffee could make me prone to strokes…anyone care to voice their opinions?

I have had FMS for about 18 years now. I love coffee! For those that do not seem to have serious Flares, coffee effects seem beneficial in some instances. I am in Flare from getting hit with MSG at lunch time yesterday. I drank a little of my half decaf half caffeinated this morning and am now so drained from raising my metabolism to burn energy I don’t have! So I guess it depends on what you got in your energy tank to burn. As for me also, MSG and Aspartame is just plain poison to me. Under the guise of “natural flavors” MSG creeps up on us. Just think if coffee was a treatment for FMS!! how happy we all would be..
I love everyone’s comments, it helps to know we not alone. Everyone take care.

Having had CFS for 7 years and now a lot better though still sleeping all morning, i cut out coffee, but then found that I could enjoy one when out in a cafe. However I’ve noticed recently that whenever I’ve had a coffee out, my body and especially my lips go tingly,and tired,then I have to sleep it off. The other day out I didn’t have a coffee and I didn’t get this. I’m not sure whether the coffee is definitely to blame, but I’m wondering if anyone else has had this, and what the reason might be?