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

REPLY

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

REPLY

Thank you for introducing me into the group.

REPLY
@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.?

REPLY

My name is John Sticco from Agawam,MA

REPLY
@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?

REPLY

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

REPLY
@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

REPLY
@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

REPLY

Colleen, thank you so very much for this group! Hello all. While I am very new to this condition and cannot offer solutions…yet :), I hope to learn/discover soon, what works for me. Meanwhile, think I’ve found a “home” here!

June 2019, walked extensively while starting my vacation. While in motion, my feet seemed to go into shock with aches, pains, big-time tingling, and creepy-crawling feelings that eventually traveled to my knees—all within the first day. Second day on, I was chomping and stomping as if on two peg legs. Iced my feet 3x/day during the 15 day trip as the feet seized-up like pistons in a vintage car! No docs available as it was a river cruise.

Once back, saw an ortho doc who would only address my knee issues. He sent me to my GP who prescribed Gabapentin for a month (only been on it a week) and now have an early 2020 appt with a neuropathic doctor.

Trying what I can to reduce the inflammation, small/large pains, tingling and the creepy-crawlies. Walking is so very difficult. Currently getting PT for plantar fac which offers remote relief and ankle stiffness from chomping around. Bumped-up my B12, D+Magnesium, topical CBD + Diclofenac Sodium gel, bought neuropathic shoes, cut gluten from my diet and whatever little thing possible till diagnosis is forthcoming—even if it is “we don’t know what the cause is.”

Realize this is purely an introduction thread, so I’m off to read about fellow sufferers’ and their successes.

Thank you and your team for being here!!

REPLY
@southwind

Colleen, thank you so very much for this group! Hello all. While I am very new to this condition and cannot offer solutions…yet :), I hope to learn/discover soon, what works for me. Meanwhile, think I’ve found a “home” here!

June 2019, walked extensively while starting my vacation. While in motion, my feet seemed to go into shock with aches, pains, big-time tingling, and creepy-crawling feelings that eventually traveled to my knees—all within the first day. Second day on, I was chomping and stomping as if on two peg legs. Iced my feet 3x/day during the 15 day trip as the feet seized-up like pistons in a vintage car! No docs available as it was a river cruise.

Once back, saw an ortho doc who would only address my knee issues. He sent me to my GP who prescribed Gabapentin for a month (only been on it a week) and now have an early 2020 appt with a neuropathic doctor.

Trying what I can to reduce the inflammation, small/large pains, tingling and the creepy-crawlies. Walking is so very difficult. Currently getting PT for plantar fac which offers remote relief and ankle stiffness from chomping around. Bumped-up my B12, D+Magnesium, topical CBD + Diclofenac Sodium gel, bought neuropathic shoes, cut gluten from my diet and whatever little thing possible till diagnosis is forthcoming—even if it is “we don’t know what the cause is.”

Realize this is purely an introduction thread, so I’m off to read about fellow sufferers’ and their successes.

Thank you and your team for being here!!

Jump to this post

Hello and welcome! Wish I could say glad to have you but, truthfully I'd rather you not need to be here. Life has strange twists and turns so here you are and here we are! It sounds like you are doing a great job at be self sufficient and proactive. Soak up the knowledge in this forum and remember we are all very different with different experiences especially when it comes to neurological disorders. 2020 can't come fast enough for you, I'm sure. Sorry, you must wait but being your own advocate is one of the best things you can do so, keep up the good work!!! Take care and my good wishes are sent your way.
Rachel

REPLY
@southwind

Colleen, thank you so very much for this group! Hello all. While I am very new to this condition and cannot offer solutions…yet :), I hope to learn/discover soon, what works for me. Meanwhile, think I’ve found a “home” here!

June 2019, walked extensively while starting my vacation. While in motion, my feet seemed to go into shock with aches, pains, big-time tingling, and creepy-crawling feelings that eventually traveled to my knees—all within the first day. Second day on, I was chomping and stomping as if on two peg legs. Iced my feet 3x/day during the 15 day trip as the feet seized-up like pistons in a vintage car! No docs available as it was a river cruise.

Once back, saw an ortho doc who would only address my knee issues. He sent me to my GP who prescribed Gabapentin for a month (only been on it a week) and now have an early 2020 appt with a neuropathic doctor.

Trying what I can to reduce the inflammation, small/large pains, tingling and the creepy-crawlies. Walking is so very difficult. Currently getting PT for plantar fac which offers remote relief and ankle stiffness from chomping around. Bumped-up my B12, D+Magnesium, topical CBD + Diclofenac Sodium gel, bought neuropathic shoes, cut gluten from my diet and whatever little thing possible till diagnosis is forthcoming—even if it is “we don’t know what the cause is.”

Realize this is purely an introduction thread, so I’m off to read about fellow sufferers’ and their successes.

Thank you and your team for being here!!

Jump to this post

Good morning @southwind. Welcome to Connect. You have evidently soaked up a lot of good information about neuropathy. I am sorry your introduction was so painful and that you have to wait for an appointment. That being said, most of the Connect members encumbered by this condition have had similar journeys. Hang in there with us. There is nothing but good will and loving kindness. Be free of suffering today. Chris

REPLY
@southwind

Colleen, thank you so very much for this group! Hello all. While I am very new to this condition and cannot offer solutions…yet :), I hope to learn/discover soon, what works for me. Meanwhile, think I’ve found a “home” here!

June 2019, walked extensively while starting my vacation. While in motion, my feet seemed to go into shock with aches, pains, big-time tingling, and creepy-crawling feelings that eventually traveled to my knees—all within the first day. Second day on, I was chomping and stomping as if on two peg legs. Iced my feet 3x/day during the 15 day trip as the feet seized-up like pistons in a vintage car! No docs available as it was a river cruise.

Once back, saw an ortho doc who would only address my knee issues. He sent me to my GP who prescribed Gabapentin for a month (only been on it a week) and now have an early 2020 appt with a neuropathic doctor.

Trying what I can to reduce the inflammation, small/large pains, tingling and the creepy-crawlies. Walking is so very difficult. Currently getting PT for plantar fac which offers remote relief and ankle stiffness from chomping around. Bumped-up my B12, D+Magnesium, topical CBD + Diclofenac Sodium gel, bought neuropathic shoes, cut gluten from my diet and whatever little thing possible till diagnosis is forthcoming—even if it is “we don’t know what the cause is.”

Realize this is purely an introduction thread, so I’m off to read about fellow sufferers’ and their successes.

Thank you and your team for being here!!

Jump to this post

Hi Colleen, my story is similar to yours including the planters fasciitis , and not being able to see a neurologist until January. In addition to what you are doing, I went off my statins, am taking, gabapentin ( so far it doesn't help, but sometimes helps me sleep) Alpha Lipolic Acid, CBD oil, neuropathic shoes, acupuncture, massage therapy, a chiropractor, and pilates. This is expensive and time consuming. The acupuncture and massage therapy seem to be helping a bit, but my conclusion is that PN has a mind of its own and some days are better than others. Have you had blood work to check for autoimmune diseases or low B 12. Mine is idiopathic which seems to make it harder to treat. So, know you are not alone.

REPLY

Thanks for adding me to this group. I’m not totally sure if it’s the right one (! do hope so, the posts are so helpful and friendly!). I’ve been diagnosed with parasthesia and am still in the process of tests. It sounds pretty similar to neuropathy, but (luckily) without pain, just crawling and tingling sensations. Will be checking back once I get a firm diagnosis. Thank heavens for the wisdom of the masses and the kindness of strangers…😊

REPLY

@moragsmum, Good morning and welcome to Connect. Our mission is to improve the quality of life for every member. Although we cannot diagnose or prescribe, we can share our experience with all the trials and tribulations. It appears we are all somewhat involved with symptoms generated by nerves and their function, It would be interesting and helpful to others if you could share the tests you are undergoing so others could benefit.

Do your symptoms come and go? Are they in a particular area of your body? Neuropathy is listed as one of the factors in diagnosing Paresthesia. I am going to welcome @johnbishop to this conversation. His journey has been somewhat similar with numbness and tingling with no pain,

When is your next appointment? May you be safe and protected. Chris

REPLY
Please login or register to post a reply.