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?

@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

Mr Crawley, Thank-you. I am beyond grateful. We're about the same age. Also, guessing similar temperaments and physical condition (including habits). I'm recently diagnosed and embarking on the journey of trying to figure out what in hell is going on. My Doc freely admits that it is a seldom fully resolved issue. You've provided me with a road map. The paths that I've taken thus far have left me mostly lost. Where do I send the cheque? Darryl

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Hello. New member. Just testing new “toy”. Nancy

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Thank you for introducing me into the group.

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@johnbishop

Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

Jump to this post

I have had neuropathy for about 5 or 6 years now. I won't bore any body about how many things I have tried because I would bet that most people in this group have been through every thing that I have. I am to the point where I am going to try the stimulator.. I would like to know if any body has tried this and did it work for you.?

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My name is John Sticco from Agawam,MA

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@johnsticco4

I have had neuropathy for about 5 or 6 years now. I won't bore any body about how many things I have tried because I would bet that most people in this group have been through every thing that I have. I am to the point where I am going to try the stimulator.. I would like to know if any body has tried this and did it work for you.?

Jump to this post

Hi John @johnsticco4, I would like to add my welcome to Connect along with other members. I don't have any experience with the stimulator but @jimhd has mentioned the use of the Burst DR stimulator and may be able to share his experience.

Are you able to share a little more about your symptoms?

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What is this stimulator that everyone is talking about? Will it help neuropathy. I wa sjust diagnosed so I'm new to all this stuff. Thanks

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@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

thank you for sharing your research. i am 83, and i am printing your article and taking it to the store with me for supplements. i have a (long unused) tens unit, but where do you get the other stimulant items? i have followed the other items, and would like to add for the people with spinal problems that waterobics and chair yoga are options also

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@tigreyes2004

What is this stimulator that everyone is talking about? Will it help neuropathy. I wa sjust diagnosed so I'm new to all this stuff. Thanks

Jump to this post

@tigereyes2004 here is the post by @jimhd on the BR Burst Stimulator which I think helps reduce or block the pain cause by the damaged nerves.

> Groups > Neuropathy > Ideas for pain relief from Small Fiber Neuropathy (SFN)
https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/?pg=14#comment-340935

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