Do I Have to Give Up Caffeine?

[anna_o]

Hi all,
I'm just starting to learn about what I need to do to manage CFS and work at getting better.

I have read that I should be avoiding caffeine. My doctor (MD who specializes in treating CFS/FM and other chronic illnesses) didn't mention this to me.

Do I really have to give up caffeine? I usually have 1 espresso drink (1 shot, 12 oz) in the morning and 1 in the afternoon. It has been the only way that I've been able to function for months now. I don't know if I will be able to continue functioning at work without at least the morning one.

Best wishes,
Anna

 

[Nielk]

I don't think that caffeine is bad for everyone especially in moderation. I too, have a cup in the morning (can't get started without it) and if I have a bad headache, I will have another one which helps my headache.
I have tried to get off caffeine for a while and it didn't improve the way I was feeling, so I went back on it.
I know that some patients can't tolerate it at all. I think you would probably know yourself if it's bad for you.

 

[Sushi]

Hi all,


I have read that I should be avoiding caffeine.
Do I really have to give up caffeine?

Best wishes,
Anna

I think it is individual. For some it seems to be poison. It helps me to raise my blood pressure in the morning, so I drink a cup. Not sure I could get out of bed without it!

If it hypes you up too much it probably isn't good. For me, it takes me from slug to upright.

Sushi

 

[Sallysblooms]

Everyone is different with or without CFS. I do fine with it.

 

[Mij]

Hi all,
I'm just starting to learn about what I need to do to manage CFS and work at getting better.

I have read that I should be avoiding caffeine. My doctor (MD who specializes in treating CFS/FM and other chronic illnesses) didn't mention this to me.

Do I really have to give up caffeine? I usually have 1 espresso drink (1 shot, 12 oz) in the morning and 1 in the afternoon. It has been the only way that I've been able to function for months now. I don't know if I will be able to continue functioning at work without at least the morning one.

Best wishes,
Anna

Anna, am I reading this right that you drink 12oz of espresso in the morning and another 12oz in the afternoon? that is a lot. I agree with what others have said that it is individual, my thinking is that if it doesn't make you feel worse afterwards then you're ok. I enjoy coffee but can only drink a cup(8oz) a day for only a couple of days and then I have take a break from it or it makes me feel drained, dizzy and I feel pressure in my head as though there isn't enough blood flow.

Even prior to having ME I had problems with caffeine. I've read somewhere that with our individual genetic differences some of us metobolize caffeine more slowly and others more quickly.

"The answer is in our genes. Specifically in a gene in the liver that is responsible for detoxifying caffeine. There are two variations of this gene and therein lies the difference that divides the population approximately in half. According to a study just published in JAMA, the Journal of the American Medical Association, if you have the slow metabolizing variation of this gene, your body processes caffeine much more slowly than people who have the fast variation. Thus multiple cups of coffee cause caffeine to build up in the blood stream before the liver can detoxify it."

 

[anna_o]

Hi mon ame - It is a 12 oz drink, but just has 1 oz (shot) of espresso and the other 11 ounces are non-fat steamed milk (mocha or latte drink from Starbucks ).

Thanks all for the input. It's good to know that it is individual. Caffeine doesn't hype me up. I can't function without it and am also going from "slug to upright". I basically can't function at work without it. But I will take it as it comes and hopefully, as I have more good days, maybe I won't need the second coffee drink in the afternoon.

Thanks!
Anna

 

[ahimsa]

Anna, am I reading this right that you drink 12oz of espresso in the morning and another 12oz in the afternoon? that is a lot.

I think Anna meant that she drinks a 12 oz drink that contains one shot of espresso. So, a 1 or 1.5 ounce shot of espresso is only part of the 12 ounces. The rest of the 12 ounces of liquid could be water or milk or soy milk or who knows what (it depends on the drink).

I'm one of those folks who is actually helped by a moderate amount of caffeine. I have NMH (Neurally Mediated Hypotension) and a certain amount of caffeine seems to help me. I do realize that not everyone can tolerate it but it works for me.

Caffeine is not nearly as helpful for me as midodrine (ProAmatine), which is a much stronger vasoconstrictor, but it does help me somewhat. What's funny is that before I had my NMH diagnosis one of the things that I did was try to make my diet as healthy as possible which included giving up caffeine (for several years). I didn't notice any improvement but I was sure that it must be helping me on some level because "everyone knows that caffeine is bad for you." After I found out about NMH then I finally understood why, for me, caffeine was helpful. It's especially helpful for me after eating. E.g., my heart rate is generally slower after a caffeine drink than it is before.

edited to add - I see that Anna beat me to it with her own answer. :Retro smile:

 

[xchocoholic]

I just figured out back in April that I can't tolerate any caffeine. I have a thread here on what caffeine actually doss to our bodies. Just search for caffeine.

It does the same thing to everyone regardless of genes. I didn.t read up on the genes but I'm assuming it's just if you have certain genes, it's tougher to detox caffeine. It will still block adenosine receptors, boost dopamine, etc. There are a lot of studies on caffeine on the web.

I read that anyone with adrenal fatigue shouldn.t use it. I mention that because those who really need it possibly have adrenal fatigue and are just further stressing your adrenal glands. Fwiw. I thought I needed it until I.d been off it for a month or two. Then my energy stabilized and I realized all it did was jazz me up and wear me out sooner. I get as much done without it.

One other benefit is thst my blood glucose regulation is better. Tc x

 

[Mij]

Ok, thanks for clarifying. I knew coffee sizes went up but 12oz of espresso went right over my head

Xchocoholic, how do you know you suffer from adrenal fatigue? I'm not sure whether I do because I've never been tested.

There are times I can drink coffee with no effect but other times I'm just wasted.

I've decided not to give it up entirely because I like to treat myself and I have stopped for months in the past but really it didn't make me feel better in any way, I felt like I lost a friend. The only problem is that I like to drink it with a nice big piece of cake or chocolate

 

[xchocoholic]

I had the saliva test a couple of years ago. Fwiw. You may not feel the effects right away. I used to get
Shakey off and on during the day everyday and that hasn.t happened for at least a month now. This symptom may have stopped sooner but I just realized it was gone.

This is the first time in my life that I know of where i've given up all caffeine ... So far so good. X

 

[Sasha]

Hi anna - I used to drink a cup of instant coffee every two hours when I was in remission and decided to give it up. At that time, I used to not be able even to get in the shower without my first morning cup of coffee, presumably because I had withdrawal symptoms from not drinking it while asleep! I took myself off it by half a cup a day and actually felt fine in the mornings. I have good-quality decaff instead now and it still feels like a treat.

There is a complicating factor in relation to orthostatic intolerance, though, which a lot of people with ME have and which people have discussed on this thread. Some people may do better on caffeine and some worse, for reasons quite separate to the issue of withdrawal symptoms.

 

[ukxmrv]

Anna,

I have one cup of espresso in the mornings and it does help me with the low blood pressure and fainting. Don't think that there is any hard and fast rule with this. Some people can cope with coffee and others can't.

In the first 10 years of having ME I tried lots of different diets and excluded many things. Tried diets where I started on a small group of foods and then progressively added new things. Didn't drink coffee at all when I developed ME. Food and drink exclusions made no real difference unless it was something really specific (like sulphourous green veges)

Take what you are told with a pinch of salt. If you are seeing a doctor and stopping coffee is the best they have to offer then it's not a good sign. I know that you aren't so I'd not be worried about that. It's always best to try it and see what works for you.

 

[*GG*]

Hi mon ame - It is a 12 oz drink, but just has 1 oz (shot) of espresso and the other 11 ounces are non-fat steamed milk (mocha or latte drink from Starbucks ).

Thanks all for the input. It's good to know that it is individual. Caffeine doesn't hype me up. I can't function without it and am also going from "slug to upright". I basically can't function at work without it. But I will take it as it comes and hopefully, as I have more good days, maybe I won't need the second coffee drink in the afternoon.

Thanks!
Anna

Can you get a change of work schedule so you can start later in the morning? When you have CFS/FIbro you can probably get a Dr to write off that you have a medical disability and you could ask for an accommodation(s) to help you keep working, if that's what you want. Lots of company/org probably don't broadcast this, and it took me filing a complaint to find out I could declare myself disabled!

Still an uphill battle, but feeling better!

GG

 

[glenp]

testing

I had the saliva test a couple of years ago. Fwiw. You may not feel the effects right away. I used to get
Shakey off and on during the day everyday and that hasn.t happened for at least a month now. This symptom may have stopped sooner but I just realized it was gone.

This is the first time in my life that I know of where i've given up all caffeine ... So far so good. X

Did you have the genetic testing that tests if your body is ok with caffeine along with several other drugs? What did it show?


I am ok with caffeine

 

[xchocoholic]

I didn.t know there was a genetic test for caffeine ... But if it.s anything like we're seeing in the gluten intolerance world, these tests are not good enough to be used as markers. For ex only dq2 and dq8 genes are recognized as related to celiac disease but we know there are others responding negatively to gluten.

Genetic testing is still in it.s infancy.

Gene or no gene tho caffeine is a drug and our bodies react to it as such. Google caffeine liver ..

Did you look at what our bodies use adenosine for ? How can blocking these receptors be good for anyone ? Or did you read how caffeine causes certain cells to drop calcium ? The studies I gave in my original caffeine thread are just the tip of the iceberg in caffeine studies ... Google caffeine to see how extensive this research is.

Tc ..x

 

[anna_o]

Can you get a change of work schedule so you can start later in the morning? When you have CFS/FIbro you can probably get a Dr to write off that you have a medical disability and you could ask for an accommodation(s) to help you keep working, if that's what you want. Lots of company/org probably don't broadcast this, and it took me filing a complaint to find out I could declare myself disabled!

Still an uphill battle, but feeling better!

GG

Thank you all for the great insights and discussion!

GG - I actually have a fairly accommodating work situation, and theoretically could start at a later hour. Unfortunately, I have 2 preschool-age boys who wake me up at 6 a.m. no matter what day it is, so I already have to get up and start functioning I have considered short-term disability leave (especially last fall when I couldn't work for 3 weeks before I started any treatment for the CFS, particularly the adrenal insufficiency), but right now I'm doing my best to keep going. All of my sick leave has been used up for this year, so I will just have to see how it goes for the fall months . . .

Thanks,
Anna

 

[Jonsparky]

I used to drink a lot of caffeine, but I stopped it about 11/2 ago, ago, and I notice a big improvement in my overall well being, and health. My main problem with caffeine was the acid build up in the body, that effected IBS. Not to mention the sleep issues and the tearing down of the adrenals. Coffee is kind of a downward spiral, the more you drink it the more you depend on it, as it depletes you adrenal storage. But all in all, if I thought I could handle it, I would start drinking it again tomorrow!

 

[Mij]

Anna, I just read that you have adrenal insufficiency? Were you tested for these? This could be why your doctor is advising you against drinking coffee. It's not a good idea drinking coffee long term if you adrenal function is not up to par. Sorry I was telling you earlier to just go ahead and drink but now I'm thinking maybe you shouldn't