Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

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

Profile picture for glenncrawley @glenncrawley

I have pretty much conquered the neuropathy problem in my feet and legs that I developed a few year ago after a two month visit to a city overseas. Being in my late 70’s (now 80) and, my body not able to sustain a life style that I am used to, my binging on a very high glucose diet and imbibing my share of alcohol caused a numbness and tingling in my feet. It progressed fairly quickly to a burning and stabbing pain sensation, and within the year my doctor diagnosed me with moderate to severe neuropathy, recommended vitamin B-12, prescribed Gabapentin, and advised me that my neuropathy would continue to worsen, and wished me good luck.

I didn’t take the Gabapentin because it only treats symptoms – I wanted to treat causes. I did a self-study of the problem and came up with the following program for myself which involved diet, weight control, exercise, supplements, and stimulus. My program description is an over simplification, but I hope it is sufficient to help someone help themselves. All these topics may be studied further to get the finer details. My feet and legs still have some numbness, but my normal feelings have come back and the pain is pretty much gone. I have regained all my muscle strength. Now my neuropathy is only a minor nuisance and I plan to keep it that way.

DIET: Sugar is the primary culprit with me. Excessive glucose (sugar) in the blood stream is absorbed by the nerves which in turn absorbs excess moisture expanding the myelin sheathing resulting in it cracking partially exposing the nerves. Too much sugar also causes oxidative stress (excessive free radicals) which also damages nerves. The unprotected nerves are painful and will soon atrophy and die away if their environment doesn’t change (I am changing their environment). I am assuming that the sheathing is easier to crack because it becomes less resilient with aging. Varying insulin sensitivity that manages glucose levels in the blood probably causes for the ups and downs of damage and pain.

So, all my food consumed has been “no sugar added or near so” on the label and the carbs must be lowest count. My food is as low glycemic as I possibly can find. Low glycemic slows down glucose entering my system before I burn it. And, absolutely no alcohol – it causes flare ups thus damage. Before commencing my diet, I “brainwashed” myself into believing that I would consume only what I need – not what I wanted or liked!

WEIGHT CONTROL: A complicated subject is how excess weigh negatively affects our health which I dare not try to detail here. It’s good enough for me that almost every informed person I know will agree that a perfect BMI is the ideal weight for the best health especially when one is dealing with the unhealthy condition of neuropathy. Unless surgery is involved, all weight loss is the body consuming itself (burning fat and muscle). The best (and maybe only) way to get the body doing that task is to deny to it it’s preferred fuel which is usually food entering the mouth. (The best diets, and how insulin, glucose, and glycogen interact in controlling weight is a topic that I have learned quite a bit about). I dropped 20 pounds to my perfect BMI of 22.5 in a couple of months and am still maintaining.

EXERCISE: Robust blood circulation is the primary benefit of exercise. Muscles are torn down and rebuilt which makes the demand on the blood system to perform maximally in addition to its normal task of sustaining life. The heart in strengthened and the blood is usually more highly oxygenated which is exactly what a small nerve needs to receive the nutrition necessary to fight free radicals and repair itself if possible. I also suspect muscle building makes a demand for nerves to regenerate just like it makes a demand for new blood vessels to develop feeding the new muscle. I do moderate resistant training with free weights for all muscle groups in the body three times a week for about an hour each time. I try to walk 30 minutes 5 days a week.

SUPPLEMENTS: For help in controlling sugar levels and boosting insulin sensitivity, I take daily 2000mg Ceylon Cinnamon, 400mg Tetra-Hydro Curcuminoids, 400mg Black Cumin Seed Oil, 100mg Ginger Root Extract, 50mg Astragalus Extract, and 200mg Corosolic Acid. I am not diabetic, but my doctor said I may be pre-pre diabetic. I add the following antioxidants to diminish the damaging free radicals and allow regeneration of nerves: 400mg CoQ1, 900mg R Alpha Lipoic Acid, 2000mg Acetyl L-Carnitine, 200mg Inositol, 2000mg Fish Oil, 125mg E Tocotrienol, a regiment of B Vitamins, and a Multi-Vitamin. I understand that given the proper nutrition, exercise and stimulation, myelin sheathing and nerves can slowly repair but not necessarily to their original state. The most important of these may be R Alpha Lipoic Acid, Acetyl L-Carnitine, and Inositol.

STIMULATES: Something not often mentioned is the stimulation of nerves for reasons other than pain blockage or pain reduction such as TENS. I use a Pulsed Electromagnetic Field (PEMF) pad 20 minutes a day for recharging the energy level in my body cells. This is the technology used by NASA to get astronauts’ bodies back to normal health after space travel. It simulates the electromagnetic field of the earth but focuses on the particular frequencies the body cells are most receptive to. Cells heal more readily the healthier they are. Next, I use Low Level Laser Therapy to stimulate circulation around the nerves about 15 mins every other day. I can really feel the results. Lastly, infrared heat in my sauna as often as I can. Used primary to treat my Stage 4 chronic kidney disease (which I have stabilized for the past few years) by stimulating blood flow throughout my body. My feet and legs receive and benefit from the same stimulation. Infrared heat is better that radiated or steam heat because instead of heating the outside of the skin, it penetrates the body a few inches with heat.

In conclusion, it appears to me neuropathy is a comprehensive self-help problem. Doctors do not specialize in my daily life and the above behaviors. It seems it’s all left up to me if I want to relieve my pain, repair nerves, and prevent further damage. The disciplined price that I pay is well worth the reward.

Jump to this post

What kind of PMEF did you use? Looking for recommendations please.

REPLY
Profile picture for glenncrawley @glenncrawley

I have pretty much conquered the neuropathy problem in my feet and legs that I developed a few year ago after a two month visit to a city overseas. Being in my late 70’s (now 80) and, my body not able to sustain a life style that I am used to, my binging on a very high glucose diet and imbibing my share of alcohol caused a numbness and tingling in my feet. It progressed fairly quickly to a burning and stabbing pain sensation, and within the year my doctor diagnosed me with moderate to severe neuropathy, recommended vitamin B-12, prescribed Gabapentin, and advised me that my neuropathy would continue to worsen, and wished me good luck.

I didn’t take the Gabapentin because it only treats symptoms – I wanted to treat causes. I did a self-study of the problem and came up with the following program for myself which involved diet, weight control, exercise, supplements, and stimulus. My program description is an over simplification, but I hope it is sufficient to help someone help themselves. All these topics may be studied further to get the finer details. My feet and legs still have some numbness, but my normal feelings have come back and the pain is pretty much gone. I have regained all my muscle strength. Now my neuropathy is only a minor nuisance and I plan to keep it that way.

DIET: Sugar is the primary culprit with me. Excessive glucose (sugar) in the blood stream is absorbed by the nerves which in turn absorbs excess moisture expanding the myelin sheathing resulting in it cracking partially exposing the nerves. Too much sugar also causes oxidative stress (excessive free radicals) which also damages nerves. The unprotected nerves are painful and will soon atrophy and die away if their environment doesn’t change (I am changing their environment). I am assuming that the sheathing is easier to crack because it becomes less resilient with aging. Varying insulin sensitivity that manages glucose levels in the blood probably causes for the ups and downs of damage and pain.

So, all my food consumed has been “no sugar added or near so” on the label and the carbs must be lowest count. My food is as low glycemic as I possibly can find. Low glycemic slows down glucose entering my system before I burn it. And, absolutely no alcohol – it causes flare ups thus damage. Before commencing my diet, I “brainwashed” myself into believing that I would consume only what I need – not what I wanted or liked!

WEIGHT CONTROL: A complicated subject is how excess weigh negatively affects our health which I dare not try to detail here. It’s good enough for me that almost every informed person I know will agree that a perfect BMI is the ideal weight for the best health especially when one is dealing with the unhealthy condition of neuropathy. Unless surgery is involved, all weight loss is the body consuming itself (burning fat and muscle). The best (and maybe only) way to get the body doing that task is to deny to it it’s preferred fuel which is usually food entering the mouth. (The best diets, and how insulin, glucose, and glycogen interact in controlling weight is a topic that I have learned quite a bit about). I dropped 20 pounds to my perfect BMI of 22.5 in a couple of months and am still maintaining.

EXERCISE: Robust blood circulation is the primary benefit of exercise. Muscles are torn down and rebuilt which makes the demand on the blood system to perform maximally in addition to its normal task of sustaining life. The heart in strengthened and the blood is usually more highly oxygenated which is exactly what a small nerve needs to receive the nutrition necessary to fight free radicals and repair itself if possible. I also suspect muscle building makes a demand for nerves to regenerate just like it makes a demand for new blood vessels to develop feeding the new muscle. I do moderate resistant training with free weights for all muscle groups in the body three times a week for about an hour each time. I try to walk 30 minutes 5 days a week.

SUPPLEMENTS: For help in controlling sugar levels and boosting insulin sensitivity, I take daily 2000mg Ceylon Cinnamon, 400mg Tetra-Hydro Curcuminoids, 400mg Black Cumin Seed Oil, 100mg Ginger Root Extract, 50mg Astragalus Extract, and 200mg Corosolic Acid. I am not diabetic, but my doctor said I may be pre-pre diabetic. I add the following antioxidants to diminish the damaging free radicals and allow regeneration of nerves: 400mg CoQ1, 900mg R Alpha Lipoic Acid, 2000mg Acetyl L-Carnitine, 200mg Inositol, 2000mg Fish Oil, 125mg E Tocotrienol, a regiment of B Vitamins, and a Multi-Vitamin. I understand that given the proper nutrition, exercise and stimulation, myelin sheathing and nerves can slowly repair but not necessarily to their original state. The most important of these may be R Alpha Lipoic Acid, Acetyl L-Carnitine, and Inositol.

STIMULATES: Something not often mentioned is the stimulation of nerves for reasons other than pain blockage or pain reduction such as TENS. I use a Pulsed Electromagnetic Field (PEMF) pad 20 minutes a day for recharging the energy level in my body cells. This is the technology used by NASA to get astronauts’ bodies back to normal health after space travel. It simulates the electromagnetic field of the earth but focuses on the particular frequencies the body cells are most receptive to. Cells heal more readily the healthier they are. Next, I use Low Level Laser Therapy to stimulate circulation around the nerves about 15 mins every other day. I can really feel the results. Lastly, infrared heat in my sauna as often as I can. Used primary to treat my Stage 4 chronic kidney disease (which I have stabilized for the past few years) by stimulating blood flow throughout my body. My feet and legs receive and benefit from the same stimulation. Infrared heat is better that radiated or steam heat because instead of heating the outside of the skin, it penetrates the body a few inches with heat.

In conclusion, it appears to me neuropathy is a comprehensive self-help problem. Doctors do not specialize in my daily life and the above behaviors. It seems it’s all left up to me if I want to relieve my pain, repair nerves, and prevent further damage. The disciplined price that I pay is well worth the reward.

Jump to this post

Which may did you use? Review?

REPLY
Profile picture for carolinec @carolinec

Which may did you use? Review?

Jump to this post

Which may?

REPLY
In reply to @carolinec "Which may?" + (show)
Profile picture for carolinec @carolinec

Which may?

Jump to this post

Mat not may.

REPLY

HI everyone my name is Jennifer I have been living with my neuropathy since 2014 since I was first diagnosed however now the current pill I am on doesn't work anymore and everything that deals with the peripheral polyneuropathy is going hay wire. I can hardly balance now; I am unable to do much without a cane or walker and I am only 41 going on 42 years

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i am an 88 year old female who worked until age 79 as a CCRN. I have severe idiopathic peripheral neuropathy that is both painful and disabling. I am looking for assistance controlling it. Help would be greatly appreciated.... MMGunia

REPLY
Profile picture for bgiddio @bgiddio

I was diagnosed with idiopathic neuropathy, meaning the Neurologist doesn't know what is causing it. I have bulging discs, spinal stenosis, and arthritis. I go to physical therapy and my therapist believes the neuropathy is causing the neuropathy, and I believe it is too. But now what?

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Has you therapist treated the lumbar spine? Does it change your symptoms? I am a PT who specialized in the McKenzie approach for diagnosis and treatment of the spine. Bulging discs will cause radicular symptoms if the bulge is compromising the foramen and touching the nerve root.

REPLY
Profile picture for madgemgunia @madgemgunia

i am an 88 year old female who worked until age 79 as a CCRN. I have severe idiopathic peripheral neuropathy that is both painful and disabling. I am looking for assistance controlling it. Help would be greatly appreciated.... MMGunia

Jump to this post

Hello Madge @madgemgunia, Sorry to hear you haven't found anything that helps your PN pain yet since you joined Connect last year. I think you mentioned in another post that you have tried alternative therapies and topicals with no relief. I was wondering if you have heard of Myofascial Release Therapy (MFR). @artscaping and others have found that it helps them and may be able to share their experiences. Here is the discussion if you want to read through the description of what it is and how it can help - https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

REPLY
Profile picture for denisept @denisept

Has you therapist treated the lumbar spine? Does it change your symptoms? I am a PT who specialized in the McKenzie approach for diagnosis and treatment of the spine. Bulging discs will cause radicular symptoms if the bulge is compromising the foramen and touching the nerve root.

Jump to this post

Hi @denisept, Welcome to Connect. Thanks for sharing your experience and information with the McKenzie approach for diagnosis and treatment of the spine. I was not familiar with it but after reading a little more about the specifics, it does make a lot of sense. Do you mind sharing what you were searching for when you found Connect?

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Hi John,
I found Connect when I was searching for treatment of post Covid Syndrome. I had Covid in early November 2021 and I have lingering headaches, dizziness and cognitive problems. I was looking for neurological symptoms when I saw some folks struggling with possible radiculopathies and added my input. I am McKenzie certified and pursued the certification after I personally was treated successfully by a colleague.

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