Living with Neuropathy - Welcome to the group

I'm a type 2 diabetic , I get occasional pain in my legs. Trying to increase my knowledge, for treatment and slowing its progress.

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Sleep is a problem than has gotten worse throughout the years. Prescriptions have too many side effect, so I went to THC.
I use CBD for my PN, but the THC does not put me to sleep. Is there a particular brand or strain that works best? When I first tried Marijuana in my youth, some party people got very sleepy, but that was never a side effect for me. I thought I just did not take in enough inhaling. Now, I have tried several brands, even buying the most expensive to see if that was the answer. Nope.
I sure wish I could solve my sleep problem!! Any ideas out there?

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Hi Colleen & John,
Thank you for sharing this information. My name is Patti and I'm at work so i'm hoping i can finished typing this because I get interrupted frequently. I was just diagnosed with Peripheral Neuropathy. I've been having pain in my left calf for a couple years and going to PT for my back to help with herniated disc & arthritis. I started having more burning pain on my upper right thigh and noticed having some muscle wasting and weakness on my arms. I am not diabetic but do have Polycystic Liver and Kidney disease. I had a liver resection surgery in 2000 and a living kidney transplant in 2006. I finally went to a neurosurgeon and had 4 MRI's on my Brain, Cervical, Thoracic and Lumber spine which then was diagnosed. I do have a small sheath tumor around the L5 nerve root but it's so small that the neurosurgeron does not want ti perform any surgery at this time.. The plan is to have another MRI on the Lumbar and brain in 1 year. The neurosurgeron has referred me to a neurology consult.
I would appreciate any information . Would love to increase my knowledge and hoping I can slow down this progression. Thank you so much!
Pk

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I’m sorry numb and tingly in my face and lips I’m scared of ms
I do have high histamine and I had Covid

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Hi @mykids, Welcome to Connect. I know it can be scary when you don't know what is causing your symtpoms and it's easy to think the worst case when do searching for answers. Since you mentioned you have high histamine levels, here is some information that might be helpful.

-- Histamine Toxicity Symptoms, Diagnosis, Treatment: https://www.aaaai.org/Conditions-Treatments/Related-Conditions/histamine-toxicity
-- Low-Histamine Diet: Benefits and How it Works: https://www.verywellhealth.com/what-is-a-low-histamine-diet-4694529

@bluecow, @tracyfurtiscaudle and @alleah may also have posted in other discussions about high histamine levels and may have some suggestions to share with you also.

Have you discussed the symptoms with your doctor or care team?

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Hi @fala, nice to see you again. I remember that you are having trouble sleeping or is it getting to sleep. With me, it is getting to sleep. Whew....my mind just jumps around. I do some concentrated breathing and focus on positive thoughts in a mindful way. I also reduce my THC but don't get rid of it because then you give up the entourage effect. For me, that means a 2:1 CBD/THC dosage. How much are you using? I use a full dropper and the under-the-tongue method about 30 minutes before lights out. I also stay off my devices and repeat some mindfulness/meditation messages to myself.

Do you take naps during the day? Long ones? Short ones?
May you find rest and contentment.
Chris

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My Neurosurgeon ordered MRIs of Lumbar and Myelogram for Lumbar as well as CT scan of Thoracic spine. Various problems visible with degenerative disc disease, calcification, spurs, arthritis, etc. He sent me to a Neurologist who diagnosed me with mild Neuropathy on both side of buttocks down to the feet. Shortly after, the foot pain, numbness, burning, cold sensations, over sensitive nerve pain all appeared withing weeks after the diagnosis.

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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

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