1. < Neuropathy

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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

joelfritzler | @joelfritzler | Jan 9, 2023
In reply to @monsieurbj "An update. First stopping the caffeine for a month did nothing for my lower leg pain...." + (show)
@monsieurbj

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

Jump to this post

For 2021, I was averaging 122 miles a month walking & hiking here in Flagstaff, AZ (at 7,100 ft.) but, for 2022, I cut back and averaged just 104 miles a month. My feet have felt better but I don't know if it is related to my neuropathy. I'm 5' 9" (previously 5' 10") and about 178 lbs. In Oct. 2021, I started taking two - 300mg. capsules of Gabapentin. In March 2022, I requested an increase to 3 capsules but for about 3 days a week until Sept. 2022 I only took 2 capsules. Since then, I always take 3 at night but I'm about to request an increase to 4 as my feet have started hurting more during the day. I know that many of you take a lot more than 1,200 mg./day. The pain varies from sharp to dull to a sunburn type sensation to a fuzzy cold numbness sensation.

I really appreciate the Mayo Clinic hosting this discussion group as the info that I get from you all is great but, I'm really, really sorry to report that I received a rejection letter from the Mayo Clinic when I requested to see someone that specializes in neuropathy. I know that they are super busy and, during the phone interview, I told the Mayo rep that I didn't expect to get an appointment for at least four month or more but, I didn't expect to told, "No.", by the Mayo Clinic. Can anyone recommend a neuropathy specialist in AZ, NM, Las Vegas, or southern Utah?

Thanks, Joel

REPLY
3 replies
monsieurbj | @monsieurbj | Jan 9, 2023
In reply to @joelfritzler "For 2021, I was averaging 122 miles a month walking & hiking here in Flagstaff, AZ..." + (show)
@joelfritzler

For 2021, I was averaging 122 miles a month walking & hiking here in Flagstaff, AZ (at 7,100 ft.) but, for 2022, I cut back and averaged just 104 miles a month. My feet have felt better but I don't know if it is related to my neuropathy. I'm 5' 9" (previously 5' 10") and about 178 lbs. In Oct. 2021, I started taking two - 300mg. capsules of Gabapentin. In March 2022, I requested an increase to 3 capsules but for about 3 days a week until Sept. 2022 I only took 2 capsules. Since then, I always take 3 at night but I'm about to request an increase to 4 as my feet have started hurting more during the day. I know that many of you take a lot more than 1,200 mg./day. The pain varies from sharp to dull to a sunburn type sensation to a fuzzy cold numbness sensation.

I really appreciate the Mayo Clinic hosting this discussion group as the info that I get from you all is great but, I'm really, really sorry to report that I received a rejection letter from the Mayo Clinic when I requested to see someone that specializes in neuropathy. I know that they are super busy and, during the phone interview, I told the Mayo rep that I didn't expect to get an appointment for at least four month or more but, I didn't expect to told, "No.", by the Mayo Clinic. Can anyone recommend a neuropathy specialist in AZ, NM, Las Vegas, or southern Utah?

Thanks, Joel

Jump to this post

Thanks Joel,

After a few days of only getting around a mile or so around the house and shopping but taking it easy I can say that I feel about 5% less early morning pain. Today I was quite bored so took my recumbent trike out for an easy cruise around town, felt good again taking it very easy. Only got a mile when the wind and rain hit me so a short lived ride. However that seemed to alleviate the numbness and tightness in my lower legs. Since all this really hit me while pushing myself on the trail, that's exactly what I think created the increase in discomfort. Backing off is hard to do for me at least but now worthy of a serious go of it. I can't take Gabapentin, gives me palpitations, also allergic to the NSAIDs, so a little Tylenol here and there but not over 1,000mg a day keeps me moving. I'll report back after a week or so and see how I'm feeling with the significant cutback in pushing the envelope.

Thanks for your reply!

Bob
REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jan 9, 2023
In reply to @joelfritzler "For 2021, I was averaging 122 miles a month walking & hiking here in Flagstaff, AZ..." + (show)
@joelfritzler

For 2021, I was averaging 122 miles a month walking & hiking here in Flagstaff, AZ (at 7,100 ft.) but, for 2022, I cut back and averaged just 104 miles a month. My feet have felt better but I don't know if it is related to my neuropathy. I'm 5' 9" (previously 5' 10") and about 178 lbs. In Oct. 2021, I started taking two - 300mg. capsules of Gabapentin. In March 2022, I requested an increase to 3 capsules but for about 3 days a week until Sept. 2022 I only took 2 capsules. Since then, I always take 3 at night but I'm about to request an increase to 4 as my feet have started hurting more during the day. I know that many of you take a lot more than 1,200 mg./day. The pain varies from sharp to dull to a sunburn type sensation to a fuzzy cold numbness sensation.

I really appreciate the Mayo Clinic hosting this discussion group as the info that I get from you all is great but, I'm really, really sorry to report that I received a rejection letter from the Mayo Clinic when I requested to see someone that specializes in neuropathy. I know that they are super busy and, during the phone interview, I told the Mayo rep that I didn't expect to get an appointment for at least four month or more but, I didn't expect to told, "No.", by the Mayo Clinic. Can anyone recommend a neuropathy specialist in AZ, NM, Las Vegas, or southern Utah?

Thanks, Joel

Jump to this post

Hi Joel @joelfritzler, Have you thought about trying a Mayo Clinic Network Member location? As part of the Mayo Clinic Care Network, the physicians can draw on the collective knowledge of Mayo Clinic. This page shows a map of the locations and links to the hospitals - https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members.

REPLY
1 reply
julbpat | @julbpat | Jan 10, 2023
In reply to @joelfritzler "For 2021, I was averaging 122 miles a month walking & hiking here in Flagstaff, AZ..." + (show)
@joelfritzler

For 2021, I was averaging 122 miles a month walking & hiking here in Flagstaff, AZ (at 7,100 ft.) but, for 2022, I cut back and averaged just 104 miles a month. My feet have felt better but I don't know if it is related to my neuropathy. I'm 5' 9" (previously 5' 10") and about 178 lbs. In Oct. 2021, I started taking two - 300mg. capsules of Gabapentin. In March 2022, I requested an increase to 3 capsules but for about 3 days a week until Sept. 2022 I only took 2 capsules. Since then, I always take 3 at night but I'm about to request an increase to 4 as my feet have started hurting more during the day. I know that many of you take a lot more than 1,200 mg./day. The pain varies from sharp to dull to a sunburn type sensation to a fuzzy cold numbness sensation.

I really appreciate the Mayo Clinic hosting this discussion group as the info that I get from you all is great but, I'm really, really sorry to report that I received a rejection letter from the Mayo Clinic when I requested to see someone that specializes in neuropathy. I know that they are super busy and, during the phone interview, I told the Mayo rep that I didn't expect to get an appointment for at least four month or more but, I didn't expect to told, "No.", by the Mayo Clinic. Can anyone recommend a neuropathy specialist in AZ, NM, Las Vegas, or southern Utah?

Thanks, Joel

Jump to this post

I would recommend the closest large hospital/ medical school group. For example, I live near University of Alabama in Birmingham (UAB), which is frequently quoted in the news. They have top-notch faculty that also see patients in specialty clinics. My appointment at UAB was scheduled for nine months away, but I called every few weeks and was able to snag an earlier appointment. I told them it didn’t matter who I saw, because any neurologist in that type of setting should be very familiar with SFN. Then they can communicate with your local physician.

REPLY
1 reply
Idied2x | @1died2x | Jan 11, 2023

My wife and I love coffee and we drink a lot of it. Not only does it seem to help me, it seems to put me to sleep rather than keep me awake. with or without it I get about three hours sleep at night and have to take naps during the day. I find going with the flow works best for me because everything gets worse if I stress. Since I love to walk I start to walk when I feel stress. The walking makes me feel good and after about 15 minutes the stress goes away. many of us have found things that help rather than just giving up.

REPLY
johnmacc | @johnmacc | Jan 11, 2023
In reply to @judyfrey "I received my neuropathy diagnosis over 30 years ago but can recall having symptoms as early..." + (show)
@judyfrey

I received my neuropathy diagnosis over 30 years ago but can recall having symptoms as early as my 20's. I don't have diabetes. I took gabapentin for many years but when I got up to 3000 mg a day with declining results, my dr. switched me to Lyrica. I've taken 300 mg/day for about 4 years and am now experiencing an increase in pain. In the past, I've been able to ignore daytime symptoms but in recent weeks I have started having bothersome late afternoon tingling in addition to often being woken after a few hours sleep. I have an appointment with my dr. next week to discuss the issue.

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Hi there Judyfrey I'm Johnmacc. I've have non diabetic pn since around 2015. At first my primary put me on gabapentin with increased dosages every few months. Didn't seem to help and we tried pregabalin for awhile and a couple others. Nothing was helping much so we decided to go back to gabapentin with high dosage. I'm currently at 3600 mg daily and that is helping cut the pain y 40-60% depending on time of day , my activities and how much load I'm placing on my feet. Hope that helps.

REPLY
1 reply
joelfritzler | @joelfritzler | Jan 11, 2023
In reply to @johnbishop "Hi Joel @joelfritzler, Have you thought about trying a Mayo Clinic Network Member location? As part..." + (show)
@johnbishop

Hi Joel @joelfritzler, Have you thought about trying a Mayo Clinic Network Member location? As part of the Mayo Clinic Care Network, the physicians can draw on the collective knowledge of Mayo Clinic. This page shows a map of the locations and links to the hospitals - https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members.

Jump to this post

Thanks John. The two Network Members nearest to Flagstaff are the Kingman Regional Medical Center (KRMC) and the ASU Campus Health Center. However, the KRMC only has a neurologist that specializes in headaches and the ASU CHC doesn't list a neurologist on their list of healthcare providers. Have you heard anything about Dr. Erik Otega with the Barrow Neurological Institute? On the BNI website, it states that he specializes in neuropathy.

My father suffered with Parkinson's disease for 12 years and, I know that PD and PN are completely different conditions but, I don't want to go through what he went through.

Thanks, Joel

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jan 11, 2023
In reply to @joelfritzler "Thanks John. The two Network Members nearest to Flagstaff are the Kingman Regional Medical Center (KRMC)..." + (show)
@joelfritzler

Thanks John. The two Network Members nearest to Flagstaff are the Kingman Regional Medical Center (KRMC) and the ASU Campus Health Center. However, the KRMC only has a neurologist that specializes in headaches and the ASU CHC doesn't list a neurologist on their list of healthcare providers. Have you heard anything about Dr. Erik Otega with the Barrow Neurological Institute? On the BNI website, it states that he specializes in neuropathy.

My father suffered with Parkinson's disease for 12 years and, I know that PD and PN are completely different conditions but, I don't want to go through what he went through.

Thanks, Joel

Jump to this post

I had not heard of him but his credentials look OK - https://www.barrowneuro.org/person/erik-ortega-md/. The sad part of all our struggles is trying to get a diagnosis and then once you get one finding out there is no cure. They just try to provide some drugs to provide relief from the neuropathy symptoms which is a good thing when the treatment works with no side effects.

REPLY
1 reply
joelfritzler | @joelfritzler | Jan 12, 2023
In reply to @johnbishop "I had not heard of him but his credentials look OK - https://www.barrowneuro.org/person/erik-ortega-md/. The sad part..." + (show)
@johnbishop

I had not heard of him but his credentials look OK - https://www.barrowneuro.org/person/erik-ortega-md/. The sad part of all our struggles is trying to get a diagnosis and then once you get one finding out there is no cure. They just try to provide some drugs to provide relief from the neuropathy symptoms which is a good thing when the treatment works with no side effects.

Jump to this post

Thanks John. I received my diagnosis about 18 months ago from a neurologist here in Flagstaff (after he sent me to two other doctors for the electric shock testing and biopsies) but he then just prescribed Gabapentin. He's a nice doc but he specializes in headaches so I've been searching for a neurologist that specializes in neuropathy to see what other options besides Gabapentin exist, as 900 mg. no longer stops the pain as it did for almost a year; after increasing from 600 mg. I know that others with PN take a lot more but 900 has made me very apathetic about everything. It was very disheartening to be turned down by Mayo; which increased my depression. I've had some bad experiences with doctors in between my pediatrician (last seen in 1969) and until finding my first PCP in 2020 so, after a positive phone call with the Mayo rep, I was excited that I was going to get to see someone that specialized in my ailment. But, I agree with you that whoever I see won't be able to offer a legitimate cure. Thanks again, Joel

REPLY
joelfritzler | @joelfritzler | Jan 12, 2023
In reply to @julbpat "I would recommend the closest large hospital/ medical school group. For example, I live near University..." + (show)
@julbpat

I would recommend the closest large hospital/ medical school group. For example, I live near University of Alabama in Birmingham (UAB), which is frequently quoted in the news. They have top-notch faculty that also see patients in specialty clinics. My appointment at UAB was scheduled for nine months away, but I called every few weeks and was able to snag an earlier appointment. I told them it didn’t matter who I saw, because any neurologist in that type of setting should be very familiar with SFN. Then they can communicate with your local physician.

Jump to this post

Thanks for the recommendation. I contacted the University of AZ's College of Medicine's Neurology Dept. but they don't see patients directly as their students are at affiliated providers such Banner Health or the Barrow Neurological Institute. However, in my search for a neuropathy specialist, via the Blue Cross Blue Shield site, I found that the Barrow doctor, Dr. Erik Ortega, also sees patients in Prescott, AZ which is about half the distance to Phoenix.

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