Coffee and Neuropathy

Posted by judyfrey @judyfrey, Apr 5, 2022

I've had neuropathy for years and currently take Lyrica to control the pain. It is only partly effective. Several months ago I read on a forum that coffee can reduce the neuropathy pain. I realize that most medical professionals advise cutting coffee intake but one night when I was about out of my mind with the tingling sensations I decided to drink a cup. Within 30 minutes the pain was reduced enough that I was able to go back to sleep. Luckily, coffee does not seem to affect my ability to sleep so now it is my go-to when I wake up with neuropathy pain.

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@fromthehill

I use to drink 8-10 cup of coffee a day….mainly for energy….but cut back to 2 cups a day first thing in AM. And that works….my brain seems wakeup and to fall into place. I did try decaffeinated but it felt awful on my stomach…tea made me feel bloated….I was told I had neuropathy. I have no pain but my feet and hands are always cold….(holding the warm coffee cup helps with that)Because I am pre-diabetic and CKD3 I dilute each of my coffees(4oz))with 12oz of water and 1Tbs 35% cream…..this way I get a big amount of liquid without carbs. The rest of the day I drink hot water with a slice of lemon. This seems to work, I am able to work in the studio without loss of energy until around 5-6pm. I also bounce on my toes and rub my hands to warm them and long arm-stockings keep them warm. I hope this helps someone.

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My neuropathy is non-diabetic. The neurologist simply said, arthritis both in my feet and lower back has damaged the nerves. My feet feel cold as well, sometimes freezing but they're warm. Obviously the nerves have short circuited and are giving my brain false information. Could be true to the pain as well. I've cut the caffeine completely but it's been only a week so maybe in another I'll be feeling better. Going from the dosage you were taking to nothing may be a factor and it may take a while for my body to get back to 'normal' after going from 2,000mg to 0mg of caffeine overnight. I'll update in a week.
Thanks for your feedback!

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Has anyone with PN taken the blood pressure med LOSARTAN?

I started to have numbness in two middle toes (like a string tied at the base) 15 years ago. It was diagnosed as a foot problem over the years with several podiatrist just prescribing inserts under the ball of the foot. It has progressed to numbness onto the ball of both feet (Fortunately I do not have a lot of pain). Recently I was also diagnosed with a Heart Block Complete. While researching medical web sites as to what that was, I ran across research that Losartan can be a cause/side effect! A short while later I also found another web site that mentioned PN as a rare but possible side-effect of the same med. Both seem to be a neurological issue. I have since changed BP meds. Curious if the effect is permanent or may reverse? My cardiologist is not familiar with either side effect.
Any comments/info would be appreciated.

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Well my son has epilepsy and has been told to avoid it, so I figured I would switch to half caff to see if it helps, which it hasn't. But I was reading an article about caffeine helping with circulation problems, which can also be common in people with peripheral neuropathy.

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It seems like we cycle through so many things good then bad, then good again. Obviously we are all different but we must keep experimenting. I have increased my coffee and for now its helping.

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I don’t usually drink coffee it in an attempt to see if it was helpful - I agree that it is helpful.

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Well, I've been off caffeine now for over 2 1/2 weeks and no change in my leg cramps or cold feet. I hike a hard and fast 3 miles each day and other than my feet feeling frozen the pain abates. After sitting for any length of time though it returns. The worst is sleeping and then getting up in the morning. No nighttime pain...yet, but it's almost like electric shock waves are piercing through my legs for the first 200 steps or so. Then it subsides a bit. But always with me. My neuropathist is pretty bland about this. I think the reason that there hasn't been more research done is that there's no money in it. Not life threatening, only selling prescriptions. Not nearly as lucrative as bypasses or cancer treatments...what it boils down to. I've been coming to the conclusion that this is as good as it gets and will just have to live with the ongoing pain...bummer, depressing....

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@monsieurbj

Well, I've been off caffeine now for over 2 1/2 weeks and no change in my leg cramps or cold feet. I hike a hard and fast 3 miles each day and other than my feet feeling frozen the pain abates. After sitting for any length of time though it returns. The worst is sleeping and then getting up in the morning. No nighttime pain...yet, but it's almost like electric shock waves are piercing through my legs for the first 200 steps or so. Then it subsides a bit. But always with me. My neuropathist is pretty bland about this. I think the reason that there hasn't been more research done is that there's no money in it. Not life threatening, only selling prescriptions. Not nearly as lucrative as bypasses or cancer treatments...what it boils down to. I've been coming to the conclusion that this is as good as it gets and will just have to live with the ongoing pain...bummer, depressing....

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I love my morning coffee! I must have missed the discussion on how caffeine could affect neuropathy pain. I don’t know if that’s researched based.
Your comment about a fast 3 miles through the numbness and pain brought back memories for me. That was me 7-8 years ago. The beginning of my neuropathy journey. Turns out I had stress fractures in both heels! I kept saying “ it feels like I’m walking on broken bones”. Well, I was. Ended up wearing two clunky cam boots for months.

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Wow! No broken bones here but still the described pain. If you google caffeine and neuropathy there may be a linkage between the pain and caffeine. Yet some say they drink caffeinated beverages and it has reduced their pain. I didn't know if it affected me that way but worth stopping and nothing changed. However I was unaware that I was consuming around 2,000mg of caffeine daily and the upper recommended dose is 400mg...so a lot! I'm back to decaf now but realize that while the caffeine may be helpful to some, nothing to me. My neuropothist said walk a lot and I have a recumbent trike, non-stationary, that I ride around town for 4- 10 miles daily when not hiking. Plenty of walking and pedaling. I just don't think neurologists or the healthcare profession takes much interest in our plight..no money in it for them and while it's debilitating not life threatening.

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@1died2x

It seems like we cycle through so many things good then bad, then good again. Obviously we are all different but we must keep experimenting. I have increased my coffee and for now its helping.

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That is very happy news!

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An update. First stopping the caffeine for a month did nothing for my lower leg pain. I hike 7 days a week, I push it on mountain trails and before that I was pushing my recumbent trike miles around town every day. I've never just sat around and done nothing.

So, has anyone had similar symptoms and done all the physical exertion that I do and found it helpful to take a few days and just do nothing? If so has it helped. I don't think my hiking has done anything more than increased the pain. When I sit and don't put weight on my legs the pain stops. Even now at the computer I don't feel pain but I will as soon as I put weight on my legs. I'm not heavy at 5'11" and 160 pounds but I don't know that matters. Should I try doing nothing and see if that turns things around. I don't suffer any pain while sleeping but getting up is like painful shock therapy on my legs in the morning....ideas anyone? Thanks Bob

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