Living with Neuropathy - Welcome to the group

Posted by Colleen Young @colleenyoung, Jul 14, 2017

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?

@jesfactsmon

@rwiney
Except for knowing it is a guy named Mike, I could easily see this being you Rachel. Are you considering an Ebike? As I was reading it felt like I was reading a post by a new Connect member. I wonder why the bikes are $2500? On Amazon I didn't see anything near that expensive so this must be some special bike.

Great article, thanks for pointing it out! Hank

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Whoops, spelled your @rwinney wrong. You are definitely NOT winey. 😉

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@johnbishop

Hi Laura @david33, You ask questions that I'm sure we have all had on our journey with neuropathy. It can be difficult, painful and something we need to learn more about so that we can figure out a way to live as well as we can with the condition. Here's something I found that talks to your concern about eating and the pain.

"Neuropathy worse after eating — Your nerves need the right balance of nutrients to function properly, and they are also vulnerable to toxins. So what you eat and drink, as well as how your body absorbs the nutrients from what you consume, can contribute to or exacerbate neuropathy, or peripheral nerve damage.May 24, 2018" excerpt from — How Diet Can Play a Role in Neuropathy Prevention and Management: https://www.everydayhealth.com/neuropathy/diet-understanding-connection/

Here are some other discussions on Connect about neuropathy & exercise.
— Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/
— Peripheral Neuropathy – Stretching and Exercise: https://connect.mayoclinic.org/discussion/peripheral-neuropathy-stretching-and-exercise/

You might also want to check out the Member Neuropathy Journey Stories: What's Yours? discussion to learn what others have found helpful and if you feel comfortable use the guidelines in the discussion description to share your own neuropathy story — https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

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@johnbishop Hi John, thank you, you have provided a great resource for finding foods as a probable cause for the neuropathy. Is there a link available to a website discussing which foods to eat or avoid once neuropathy or muscle weakness has been diagnosed no matter the cause? I will be interested in finding information focusing on a specific diet to help with neuropathy or muscle weakness symptoms. Which vitamin or mineral supplements could offer help? Thanks again. As always, you are a book of knowledge when it comes to the internet. Wishing you the best. Toni

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@jesfactsmon

@david33
Laura, I want to extend a warm welcome to you. Everyone here knows plenty about neuropathy generally and pain specifically. First I must say that you are way over my pay grade for giving out help, I care for my wife who suffers peripheral neuropathy (PN) pain in her feet. It sounds like your pain is primarily in your digestive areas? How did you find out it is PN related? Did you get a diagnosis. What were your multiple surgeries for exactly?

Maybe you could start at the beginning and tell your story from there, how it all started, your dealings with doctors, what medicines have you taken previously, who you have in your life for support. Lay it all out from the start up until now. Then people here will have a better picture of what you are dealing with and will be able to give their 2 cents worth to you. Some of the advice I seen given out here has been nothing short of incredible and right on.

I am very sorry for the agony you are in right now. I hope you receive help. Best to you, Hank

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@jesfactsmon Hank, if your wife's neuropathy pain is only in her feet and legs, you and she might want to take a look at the possibility of getting a peripheral nerve stimulator installed. Read about the SPR Peripheral Nerve Stimulator (SPRINT) and the Bioness StimRouter. Could give her some pain relief.

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@jesfactsmon

@rwiney
Except for knowing it is a guy named Mike, I could easily see this being you Rachel. Are you considering an Ebike? As I was reading it felt like I was reading a post by a new Connect member. I wonder why the bikes are $2500? On Amazon I didn't see anything near that expensive so this must be some special bike.

Great article, thanks for pointing it out! Hank

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@jesfactsmon Hi Hank! It was very inspiring and I felt as though it could me telling the story but, no, I'm only looking for a recumbent stationary bike for winter.

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@avmcbellar

@johnbishop Hi John, thank you, you have provided a great resource for finding foods as a probable cause for the neuropathy. Is there a link available to a website discussing which foods to eat or avoid once neuropathy or muscle weakness has been diagnosed no matter the cause? I will be interested in finding information focusing on a specific diet to help with neuropathy or muscle weakness symptoms. Which vitamin or mineral supplements could offer help? Thanks again. As always, you are a book of knowledge when it comes to the internet. Wishing you the best. Toni

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Hi Toni @avmcbellar, The Foundation for Peripheral Neuropathy has a great list that talks about nutrition that you might find helpful.

Best Peripheral Neuropathy Diet | Foods To Avoid: https://www.foundationforpn.org/living-well/lifestyle/nutrition/

What started me on the journey to eating more healthy as far as helping my small fiber PN was a book by Dr. Terry Wahls – The Wahls Protocol which she writes about her research to help her symptoms of MS. She really does have an amazing story of going from a wheel chair to being able to ride her bike again. More information is available on her website – https://terrywahls.com/

I've also been interested in learning more about health gut bacteria and started making my own special yogurt with a special type of bacteria – Lactobacillis reuteri. I found the Best Yogurt Ever on @LeeAase's My Health Journey blog which also got me started on alternate fasting for health and weight loss. I've done so well on the weight loss – down from 244+ in January to 216 this morning which is one pound from my goal of 215. I'm now planning to reset my goal to 200 to give me some wiggle room 🙂 Check out Lee's Best Yogurt Ever blog entry here where you can also find an entry for my trip down health lane – https://social-media-university-global.org/my-health-journey/

One of my saved bookmarks is a video that someone shared with me awhile back – How The Gut Microbiota Affects Our Health with Dr. Erica & Dr. Justin Sonnenburg

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@johnbishop

Hi Toni @avmcbellar, The Foundation for Peripheral Neuropathy has a great list that talks about nutrition that you might find helpful.

Best Peripheral Neuropathy Diet | Foods To Avoid: https://www.foundationforpn.org/living-well/lifestyle/nutrition/

What started me on the journey to eating more healthy as far as helping my small fiber PN was a book by Dr. Terry Wahls – The Wahls Protocol which she writes about her research to help her symptoms of MS. She really does have an amazing story of going from a wheel chair to being able to ride her bike again. More information is available on her website – https://terrywahls.com/

I've also been interested in learning more about health gut bacteria and started making my own special yogurt with a special type of bacteria – Lactobacillis reuteri. I found the Best Yogurt Ever on @LeeAase's My Health Journey blog which also got me started on alternate fasting for health and weight loss. I've done so well on the weight loss – down from 244+ in January to 216 this morning which is one pound from my goal of 215. I'm now planning to reset my goal to 200 to give me some wiggle room 🙂 Check out Lee's Best Yogurt Ever blog entry here where you can also find an entry for my trip down health lane – https://social-media-university-global.org/my-health-journey/

One of my saved bookmarks is a video that someone shared with me awhile back – How The Gut Microbiota Affects Our Health with Dr. Erica & Dr. Justin Sonnenburg

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Congratulations on your continued progress, John! It's exciting that you're at the point where you're ready to set a new, lower weight goal.

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@rwinney

@jesfactsmon Hi Hank! It was very inspiring and I felt as though it could me telling the story but, no, I'm only looking for a recumbent stationary bike for winter.

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Hi Rachel, I had a combo recumbent elliptical/bike exercise machine that was reasonable priced and worked great for both purposes but I recently upgraded and got a Teeter FreeStep LT1 because it is more of a crossfit trainer and better for upper arms, shoulders and legs. Also the leg motion is more closer to walking than using a standard elliptical machine. Teeter has a lot of great instruction videos for targeting different muscle groups on their website. I'm also thinking about one of their Fitspine inversion tables. I had a really old cheap one that I gave away because it was difficult to adjust and bring myself back upright.

A newer version of my old ProForm Hybrid Trainer – https://www.amazon.com/ProForm-PFEL03815K-Hybrid-Trainer/dp/B014IWD79G
The Teeter FreeStep LT1 – https://teeter.com/product/freestep-lt1/

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@johnbishop

Hi Toni @avmcbellar, The Foundation for Peripheral Neuropathy has a great list that talks about nutrition that you might find helpful.

Best Peripheral Neuropathy Diet | Foods To Avoid: https://www.foundationforpn.org/living-well/lifestyle/nutrition/

What started me on the journey to eating more healthy as far as helping my small fiber PN was a book by Dr. Terry Wahls – The Wahls Protocol which she writes about her research to help her symptoms of MS. She really does have an amazing story of going from a wheel chair to being able to ride her bike again. More information is available on her website – https://terrywahls.com/

I've also been interested in learning more about health gut bacteria and started making my own special yogurt with a special type of bacteria – Lactobacillis reuteri. I found the Best Yogurt Ever on @LeeAase's My Health Journey blog which also got me started on alternate fasting for health and weight loss. I've done so well on the weight loss – down from 244+ in January to 216 this morning which is one pound from my goal of 215. I'm now planning to reset my goal to 200 to give me some wiggle room 🙂 Check out Lee's Best Yogurt Ever blog entry here where you can also find an entry for my trip down health lane – https://social-media-university-global.org/my-health-journey/

One of my saved bookmarks is a video that someone shared with me awhile back – How The Gut Microbiota Affects Our Health with Dr. Erica & Dr. Justin Sonnenburg

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John. Congrats on the weight loss!!!

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@LeeAase

Congratulations on your continued progress, John! It's exciting that you're at the point where you're ready to set a new, lower weight goal.

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Thanks Lee! My weekly weight chart looks like a bad EKG but then I have to realize it's not the day to day but overall pattern that I need to focus on. I have been trying to focus more on lowering the amount of carbs in my diet but I'm sometimes not aware of how many I'm taking in.

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@johnbishop

Hi Toni @avmcbellar, The Foundation for Peripheral Neuropathy has a great list that talks about nutrition that you might find helpful.

Best Peripheral Neuropathy Diet | Foods To Avoid: https://www.foundationforpn.org/living-well/lifestyle/nutrition/

What started me on the journey to eating more healthy as far as helping my small fiber PN was a book by Dr. Terry Wahls – The Wahls Protocol which she writes about her research to help her symptoms of MS. She really does have an amazing story of going from a wheel chair to being able to ride her bike again. More information is available on her website – https://terrywahls.com/

I've also been interested in learning more about health gut bacteria and started making my own special yogurt with a special type of bacteria – Lactobacillis reuteri. I found the Best Yogurt Ever on @LeeAase's My Health Journey blog which also got me started on alternate fasting for health and weight loss. I've done so well on the weight loss – down from 244+ in January to 216 this morning which is one pound from my goal of 215. I'm now planning to reset my goal to 200 to give me some wiggle room 🙂 Check out Lee's Best Yogurt Ever blog entry here where you can also find an entry for my trip down health lane – https://social-media-university-global.org/my-health-journey/

One of my saved bookmarks is a video that someone shared with me awhile back – How The Gut Microbiota Affects Our Health with Dr. Erica & Dr. Justin Sonnenburg

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@johnbishop. Thanks John, I've just bought the book with the Google money i earned. I believe in good gut bacteria. I regularly eat kimchee and drink kombucher. My friend had been taking OTC stuff for decades due to acid reflux, he cut out diary and gluten and he's "cured". He lost over 40 lbs on intermittent fasting and sometimes he fasts a couple of days. He's also vegan. We were just talking about diets and various diseases. I don't think doctors talk to patients enough about their diets and lifestyle. Maybe as patients we need to be more proactive about that. My doctor, whom I'm leaving after this year, told my son he has some lengthy interesting discussions with me! Ha! Maybe because i don't always agree with him.

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@johnbishop

Hi Toni @avmcbellar, The Foundation for Peripheral Neuropathy has a great list that talks about nutrition that you might find helpful.

Best Peripheral Neuropathy Diet | Foods To Avoid: https://www.foundationforpn.org/living-well/lifestyle/nutrition/

What started me on the journey to eating more healthy as far as helping my small fiber PN was a book by Dr. Terry Wahls – The Wahls Protocol which she writes about her research to help her symptoms of MS. She really does have an amazing story of going from a wheel chair to being able to ride her bike again. More information is available on her website – https://terrywahls.com/

I've also been interested in learning more about health gut bacteria and started making my own special yogurt with a special type of bacteria – Lactobacillis reuteri. I found the Best Yogurt Ever on @LeeAase's My Health Journey blog which also got me started on alternate fasting for health and weight loss. I've done so well on the weight loss – down from 244+ in January to 216 this morning which is one pound from my goal of 215. I'm now planning to reset my goal to 200 to give me some wiggle room 🙂 Check out Lee's Best Yogurt Ever blog entry here where you can also find an entry for my trip down health lane – https://social-media-university-global.org/my-health-journey/

One of my saved bookmarks is a video that someone shared with me awhile back – How The Gut Microbiota Affects Our Health with Dr. Erica & Dr. Justin Sonnenburg

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@johnbishop John~you know how I feel about you! 😍 I am so happy you have shared your success story here with others. You, sir, deserve to be recognized for your tenacity, perseverance and wealth of knowledge -that you walk the walk on, not just talk the talk. Kudos to you my friend, our fearless leader! XOXO 👏🏼💪🏼
Rachel

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@johnbishop

Hi Rachel, I had a combo recumbent elliptical/bike exercise machine that was reasonable priced and worked great for both purposes but I recently upgraded and got a Teeter FreeStep LT1 because it is more of a crossfit trainer and better for upper arms, shoulders and legs. Also the leg motion is more closer to walking than using a standard elliptical machine. Teeter has a lot of great instruction videos for targeting different muscle groups on their website. I'm also thinking about one of their Fitspine inversion tables. I had a really old cheap one that I gave away because it was difficult to adjust and bring myself back upright.

A newer version of my old ProForm Hybrid Trainer – https://www.amazon.com/ProForm-PFEL03815K-Hybrid-Trainer/dp/B014IWD79G
The Teeter FreeStep LT1 – https://teeter.com/product/freestep-lt1/

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@johnbishop Cool! I will do some research on these also. Thanks John. I've never worked out a day in my life therefore I dont know how these machines will feel. Tough ordering something that you are unsure of how your body will work with it. Any suggestions? My plan is to size up the equipment at Mayo.

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