it is because of the 'foricet' meds... Web it up 'foricet prescribing information' and you will find that some forms of this med DO include caffeine. So your doc is being cautious about you getting too much of a buzz, maybe.
I too was instructed to quit it, which I did, but it made absolutely zero difference. But then, I'd not had any meds that included the caf to offset the med side effects [s/e's]. Something to think on I believe.
Caffeine is for some, hard to get off of. Many have problems, most folks tho, don't.
With neuropathies, any thing we do or don't do must be approached with caution. Better that than something unforseen, you know?
Hang in there, keep telling yourself it could be lots different and count your blessings! 's - j

on this forum. I cannot drink either decaf or caf. Oh an occasional cup is fine but not on a steady basis. When I switched to decaf, I thought I'd be OK. Not so. I buy European process decaf beans & grind them myself. The coffee is delicious & except for no caffeine headrush, there is no discernible difference in the taste. But I still get what I term "wim-wams" anyway. What are wim-wams? They're internal buzzing, tremors, weakness which are very annoying & disabling.

So now I drink chamomile+peppermint tea. It is boring & flavorless but I do not get wim-wams from it and I guess it'll have to do until something better comes along.

I drink 3 - 8oz mugs of high-test coffee, every a.m. when I get to work.
That, along with 2 'Fiber One' bars, or some sort of sweet- is my breakfast.
No coffee during the day. Sometimes after dinner in a restaurant,
but never after dinner at home.
Doesn't affect my PN at all.

Hello again everyone, and thank you so much for all of your input.

Bob B, I was wondering though, have you ever stopped the caffeine, to see if there was a difference, or a measurable improvement in your PN?

I would like to investigate into how caffeine actually could affect PN, making it worse as my family doctor suggested it does. That is why he did not want to refill my fioricet for me, due to the caffeine in it. I also wonder if it is just certain types of PN that caffeine can aggravate?

At any rate, even if caffeine could cause PN to become worse, I only take fioricet occasionally to stop my migraine pain. So, I have no idea if my doctor meant that even little use of caffeine could aggravate my PN, and just temporarily? If so, I still would take the fioricet, and rid the migraine, since that medication is the only medication that has worked.

Now, if he meant any caffeine can cause the PN to progress, then that is a different story, then I would probably not take the fioricet at all, and really try to give up caffeine. So can caffeine make the pain worse or actually increase the damage to nerves? That is my question. Oh my someone must know...I am going to keep trying to find out.

If you are wondering why I don't just ask the doctor that told me that caffeine is not good for PN, that is due to our medical coverage does not cover any doctors visits, only hospital treatments, so if I wanted to see him to discuss the matter, it would cost me 65 dollars, which we don't have at the present time. I did not think to ask him back months ago when he told me, unfortunately!

I did buy light coffee, and am trying to cut back on sugar...Oh my I was so sick Friday night with a huge migraine, then yesterday I was so tired, I could do absolutely nothing. So that is what I get for not following Mrs D plan...

Today I have busy plans, so I bought some "Real" coffee, and had a slight bit of sugar, and I feel better.

Patty
Enjoy your week end.

Tremors that some CMTers can have are made worse by caffeine in coffee, tea, etc. if you drink a lot of it and strong. Also from nicatene in cigarettes. However, I've never heard that it will make the neuropathy worse so to speak. At least not for CMT.

I drink two cups of coffee, not strong, in the A.M. and one cup of weak tea in the afternoon. I have no trouble with tremors or any other effects from caffeine. I would guess if I drank a lot of caffeine it would/could be a different story. I do not drink pop or anything else with caffeine. Just sharing my thoughts. Everyone is different.

you could try to send that doctor an email for clarification. or a phone call. you shouldnt have to pay for a doctor visit to get a statement clarified. I have emailed doctors in the past and gotten replies, including some top experts in their field.

A pm doctor I was researching had a topic on this along with other things in diet then can increase pain. Like some here state sugar so on. I am seeing a nutritionist again who I am going to try to work with this on. I know for me when I get stop using it the start I have bad head aches so on from going through withdrawl. To me that is a bad sign of what it does to your body. I do feel everyone is different in how they respond to things like this so maybe try and see. It may not help with this but may help with other health aspects.

do you get the "wimwams" from hot cocoa as well?

There are many substances in coffee that are NOT caffeine.

Coffee for many people is a laxative. For me it is a MAJOR laxative. Those internal wim-wams, or vibrating feeling, always precedes a laxative moment for me, by about an hour or two.

I gave up coffee because I had no life outside the bathroom when I drank it! I can't imagine how different I am from those who drink 10 cups or more (I knew a woman who drank 14 cups a day!) I suspect people develop a tolerance to the caffeine and start to metabolize it off more quickly than others.

The caffeine I get from tea does not have this effect on me at all.

?theobromine? (sp), which is why i was asking about cocoa....but, then again, that is higher in tea,than coffee......ah, the complexities of the human body