Living with Neuropathy - Welcome to the group

Hi Colleen,
I'm so glad that you're here for us. I'm brand new to this group, and I'm feeling very depressed. I'm a 61 year old female, who has had diabetes since 2006. I started having neuropathy symptoms in August of 2018. As of right now, I have neuropathy in both feet, both small and large intestines, bladder( I have a folley catheter), skin, and as of this morning, my throat. I am so depressed. I feel like neuropathy is stealing my life from me. I used to be so active, and love to go to lawn sales, and markdowns stores, and having lots of fun. But not anymore. I have a catheter bag on my leg, and now I need a walker. I can only sing two verses of the songs at church, because I run out of breath, and I used to love singing, and was in the choir. But not anymore. I'm currently being tested for neuropathy in my heart and lungs. Colleen, I have a question for you, can neuropathy kill you? Because I think that's what it's doing to me.
Thank you for listening to me.
Cathy

I am asking help from you all. I have fibromyalgis, peripheral neuropathy and lymphedema. All diagnosed as idiopathic???. I don't agree and very few tests have been done to prove otherwise. I believe idiopathic is used because it is easier. I feel other things are going on. My question is has anyone with neuropathy found that towards morning light you are awakened by the feeling that your entire body, including face, is engulfed by hot water running through every fiber of your body? I cannot go bed to sleep once this process starts. I almost feel like my breathing is difficult. This along with the numbness in my legs and cramps so bad in my legs and now up the entire leg. I do get up and when the cramps slow down I get in the shower. My anxiety is then over the top. I don't know if these episodes are caused by anxiety or the anxiety is caused by the episodes. This has been going on for almost a year. I have been prescribed Lexapro 5 mg at night to help with anxiety. Well, that's not working. Medication before bed is 5 mg lexapro, 50 mg Elavil (for neuropathy pain) and 600 mg gabapentin. I am now taking 10 mg melatonin for sleep along with 1/2 dropper CBD. Daytime meds 40 mg lasix. 37.5 effexor That is 5 meds prescribed and 2 prescribed by me. I also take (almost forgot) percocet as needed during the day. This may be 2 1/2 the entire day and none taken at night. I don't know. I see my doctor tomorrow and she will "I don't believe it is the medication. OK so what is it and what recommendation do you have. I am really concerned because I am not going to bed until 11 pm and waking every hour or two until about 5 am. I don't want to go to bed at night. I don't want the process to start all over. It's not that I don't want to wake up in the morning. It is that I am worn down from the process. I am now having fears of the nightly and morning episodes. My day gets better and I try to forget it happened. I am getting really messed up here. The neuropathy is kicking my butt with difficulty walking and severe numbness. I am not seeing a neurologist and the neuropathy was diagnosed by pain management by doing the nerve conduction test. Thank you.

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.

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.

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.

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