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.

@julbpat

The three punch biopsy sites on each leg help determine if your SFN is length-dependent or not. I wouldn’t spend a lot of time studying about those differences until you get the results. Then you can zero in on the type you most likely have, and learn more about the treatment that works for it.

As far as meds go, I have concluded, after years of trial and error, that medications are probably necessary. You may end up trying lots of different meds for this nerve pain. And what works for you will probably change over time. I suggest that you pay close attention to your body and any reactions, both good and bad. Make some notes, or even charts, if that works for you. Prepare to spend some time (and money) on physical therapy, massage, acupuncture - whatever works for you.

If someone tries to tell you that something you did - (like your diet, or excess weight, or lack of exercise, etc) caused this, just politely shut them down. You didn’t cause this, and a well-meaning friend or family members with some articles cannot cure you. If that were the case, no one would need to be on this forum!

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Please help with recommendations on meds! I have arthritis and tingling numbness in feet and legs. ???
Thanks 🙏

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@felicia2

Please help with recommendations on meds! I have arthritis and tingling numbness in feet and legs. ???
Thanks 🙏

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Hello @felicia2, Welcome to Connect. I have small fiber peripheral neuropathy with a little tingling and numbness in my feet and legs and as far as I know there are no medications that will help with numbness. There is another discussion where the numbness only symptoms are being discussed that may be helpful --- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/

Have you been diagnosed with neuropathy? Has your doctor recommended a treatment?

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@felicia2

Please help with recommendations on meds! I have arthritis and tingling numbness in feet and legs. ???
Thanks 🙏

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The medication recommendations would come from your doctor, based on your actual diagnosis. But I'm sure you realize that. I was discussing a diagnosis of SFN, which involves pain that is difficult to control without prescription meds. Hope you get a diagnosis and helpful treatment soon!

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My name's Richard. I'm 80 years old and I was diagnosed with Type 2 diabetes and hypertension about forty years ago. I started having numbness in my toes and genital area about twenty years ago. In the last five years, I started developing retinopathy. I decided to get as healthy ass possible. I changed my eating lifestyle, lost 114 pounds, and started exercising. I've been doing this for eight years, and my health has rebounded to a surprising degree. The neuropathy in my toes and genitals is receding, and the retinopathy has just recently started to have longer periods without that spot in my right eye that was blurry. I attribute all these changes to better health. I have the notion that the root mechanism behind the neuropathy, microangiopathy, can be made to recede and possibly reversed. I think aerobic exercise helps, but I'm looking for other ways besides diet and exercise. I read a week ago that when people have an MCI, a process called efferocytosis produces two microphages, one of which produces a protein that heals the endothelium. Since the veins and capillaries also have endothelial tissue, I think there might be a way to induce an effercytotic state which would help heal the damage done by diabetes and hypertension. Does anyone else have any info or experience with reversing microangiopathy?

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@valleyjunction1942

My name's Richard. I'm 80 years old and I was diagnosed with Type 2 diabetes and hypertension about forty years ago. I started having numbness in my toes and genital area about twenty years ago. In the last five years, I started developing retinopathy. I decided to get as healthy ass possible. I changed my eating lifestyle, lost 114 pounds, and started exercising. I've been doing this for eight years, and my health has rebounded to a surprising degree. The neuropathy in my toes and genitals is receding, and the retinopathy has just recently started to have longer periods without that spot in my right eye that was blurry. I attribute all these changes to better health. I have the notion that the root mechanism behind the neuropathy, microangiopathy, can be made to recede and possibly reversed. I think aerobic exercise helps, but I'm looking for other ways besides diet and exercise. I read a week ago that when people have an MCI, a process called efferocytosis produces two microphages, one of which produces a protein that heals the endothelium. Since the veins and capillaries also have endothelial tissue, I think there might be a way to induce an effercytotic state which would help heal the damage done by diabetes and hypertension. Does anyone else have any info or experience with reversing microangiopathy?

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Hi Richard @valleyjunction1942, Welcome to Connect. Congratulations on making the lifestyle and eating changes to get as healthy as possible. I have made similar changes also to improve my health. The past 2 years I started working on losing more weight and exercising more to improve my health and get rid of my pre-diabetes diagnosis. I also have small fiber peripheral neuropathy with numbness in the feet and legs. I posted my story in another discussion here - https://connect.mayoclinic.org/comment/310341/.

I wasn't familiar with efferocytosis and found this June 2022 article that sounds similar to what you are looking for -- Drugging the efferocytosis process: concepts and opportunities: https://www.nature.com/articles/s41573-022-00470-y.

What started my search into looking at diet and lifestyle more was reading the story of Dr. Terry Wahls who rolled back her MS symptoms through eating changes -- https://terrywahls.com/about/about-terry-wahls/. I also did a little research on the metabolic syndrome and found an interesting video by Dr Jay Wortman - Diabetes Remission is Surprisingly Simple! -- https://www.youtube.com/watch?v=Cx6xw3wOAMc.

I have found that Google Scholar is quite useful when looking for medical research articles.
Have you done any research using Google Scholar - https://scholar.google.com/?

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@johnbishop

Hi Richard @valleyjunction1942, Welcome to Connect. Congratulations on making the lifestyle and eating changes to get as healthy as possible. I have made similar changes also to improve my health. The past 2 years I started working on losing more weight and exercising more to improve my health and get rid of my pre-diabetes diagnosis. I also have small fiber peripheral neuropathy with numbness in the feet and legs. I posted my story in another discussion here - https://connect.mayoclinic.org/comment/310341/.

I wasn't familiar with efferocytosis and found this June 2022 article that sounds similar to what you are looking for -- Drugging the efferocytosis process: concepts and opportunities: https://www.nature.com/articles/s41573-022-00470-y.

What started my search into looking at diet and lifestyle more was reading the story of Dr. Terry Wahls who rolled back her MS symptoms through eating changes -- https://terrywahls.com/about/about-terry-wahls/. I also did a little research on the metabolic syndrome and found an interesting video by Dr Jay Wortman - Diabetes Remission is Surprisingly Simple! -- https://www.youtube.com/watch?v=Cx6xw3wOAMc.

I have found that Google Scholar is quite useful when looking for medical research articles.
Have you done any research using Google Scholar - https://scholar.google.com/?

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Thank you so much. I have not used Google Scholar, but I will do so. Whatever I find of interest, I will post here. I'm sharing articles with my cardiologist and opthamatologist. They're very helpful.

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@valleyjunction1942

Thank you so much. I have not used Google Scholar, but I will do so. Whatever I find of interest, I will post here. I'm sharing articles with my cardiologist and opthamatologist. They're very helpful.

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I forgot to mention that besides losing 114 pounds, my A1c is between 5.8 and 6.4. I reversed three conditions that put me at risk for heart attack and stroke. A hematologist cured a decades long problem with low iron numbers using Folate and B12. My hypertension is well controlled. I have a feeling, that aerobic exercise may resolve the neuropathy issues, but it's a very long process. Diet and exercise have accomplished a lot, but microangiopathy may not be reversible.

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@mamabear143

You’re welcome! It’s nice to find a group that can understand what’s going on.. it’s scary for me, I’m 35 and never had any nerve problems until March of 2022.. does heat make your symptoms worse? And do yiy have any temperature regulation issued? My body stopped sweating all over and I do r regulate temp anymore ..

Do you mind sharing what kind of cannabis tincture works for you.. I’ve tried some but it doesn’t help me sleep , and I know sleep is so important.. I’d prefer medical cannabis to the sleep medicine the dr tried me on.. thank you for the support

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@mamabear143 and @windsorchris Since you both asked for similar information, here are notes from my experience with medical cannabis which I have been using for about five years for SFN. Production and manufacturing of cannabis have developed considerably in that time. Legality enforces regulation which is also helpful. So, I no longer have to worry about strains and strengths. I just have to make sure that the makers have met every requirement to ensure consistency from bottle to bottle and have complied with testing mandates. Even so....I still discover some inconsistencies.....sometimes when a new size of the product is introduced or you try a substitute.

You do not have to be overwhelmed with too many product choices. You only need tinctures and topicals. Some folks do like capsules. I want to measure my own doses.

At this point, I use basic CBD/THC dosages, e.g. 2:1 CBD/THC for sleep and 1:1 CBD/THC for the get-up and go energy. Some companies will produce both a 3:1 CBD/THC and a 1:3 CBD/THC. One might be for acute pain and the other for chronic pain.

In the morning, I will take a look at my day and loosely determine what I will need and when. Then, I can still make alterations as the day plays out. Sleep is the most important.....and you do need to calculate not only the dosage but also how you take it. If you hold the tincture under your tongue so that it goes through the membrane and up to your brain, your response time can be within 15 or 20 minutes. If you swallow a capsule or a dropper, then the liquid will have to go through your digestive system which means that the response time can take up to an hour.

I hope this information is helpful. Please remember that you are your own prescriber and performance evaluator. And then there is always the message to remember, "you can always have more but you can never have less".

May you be free of suffering and the causes of suffering.

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@artscaping

@mamabear143 and @windsorchris Since you both asked for similar information, here are notes from my experience with medical cannabis which I have been using for about five years for SFN. Production and manufacturing of cannabis have developed considerably in that time. Legality enforces regulation which is also helpful. So, I no longer have to worry about strains and strengths. I just have to make sure that the makers have met every requirement to ensure consistency from bottle to bottle and have complied with testing mandates. Even so....I still discover some inconsistencies.....sometimes when a new size of the product is introduced or you try a substitute.

You do not have to be overwhelmed with too many product choices. You only need tinctures and topicals. Some folks do like capsules. I want to measure my own doses.

At this point, I use basic CBD/THC dosages, e.g. 2:1 CBD/THC for sleep and 1:1 CBD/THC for the get-up and go energy. Some companies will produce both a 3:1 CBD/THC and a 1:3 CBD/THC. One might be for acute pain and the other for chronic pain.

In the morning, I will take a look at my day and loosely determine what I will need and when. Then, I can still make alterations as the day plays out. Sleep is the most important.....and you do need to calculate not only the dosage but also how you take it. If you hold the tincture under your tongue so that it goes through the membrane and up to your brain, your response time can be within 15 or 20 minutes. If you swallow a capsule or a dropper, then the liquid will have to go through your digestive system which means that the response time can take up to an hour.

I hope this information is helpful. Please remember that you are your own prescriber and performance evaluator. And then there is always the message to remember, "you can always have more but you can never have less".

May you be free of suffering and the causes of suffering.

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Good morning.
Curious, aren’t there side effects from using this
cannabis ?
I tried it one time, briefly, because I noticed some
digestive issues. Is this considered one of the main
side effects. If yes, doesn’t seem worth the aggravation
to me but then again, maybe I was experiencing a
different issue at that time.
Just wondering.
Thanks.
Vince

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@vinran

Good morning.
Curious, aren’t there side effects from using this
cannabis ?
I tried it one time, briefly, because I noticed some
digestive issues. Is this considered one of the main
side effects. If yes, doesn’t seem worth the aggravation
to me but then again, maybe I was experiencing a
different issue at that time.
Just wondering.
Thanks.
Vince

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Good evening Vince, thanks for your response and I will gladly answer your question. The fact is, I have no side effects with medical cannabis with a couple of exceptions.
#1 is dry mouth. I carry a Contigo bottle everywhere I go. I also notice that THC seems to bring on a slightly more intense dry mouth.

I also make my own lemonade with fresh lemons and a bit of sugarless energy drink to prevent kidney stones. That helps also.

I stick to tinctures and topicals.......no drinks or treats like homemade brownies. Maybe it is time to give cannabis another try. There have been lots of improvements in both the growing and the preparation of the current products.

I can't think of anything else.....I sleep well, usually with my nerve pain under control. I have never had any constipation or digestive issues.

Have you experienced side effects or read about them?

May you have contentment and ease in your life.
Chris

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