1. < Neuropathy
Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Hank | @jesfactsmon | Sep 11, 2020
In reply to @david33 "Hi Hank, I know exactly how this feels. I have pain that keeps me awake, and..." + (show)
@david33

Hi Hank,
I know exactly how this feels. I have pain that keeps me awake, and when I won't go to bed until my body gets exhausted that's when I will climb into bed and pass out, when it's time to get up (it feels like I'm being pulled from a deep sleep) I don't feel or move, and I fall back to sleep again (when I think of the time of the day it might be, I pull or have someone to pull me into a sitting position), I pray that I don't wake up, but once I'm awake I thank God that I can be with my family no matter how much pain I'm in. I'm thankful for my family for helping me when I feel low about myself.

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@david33
Laura, I am reading your posts since February of this year. You mention you were hit in the head with a block of wood around 2017 or so. You also say you do not remember much since 2012. What happened in 2012?

It sounds like you have seen a lot of doctors and have been prescribed a fair bit of medicine (drugs). Plus it sounds like the doctors have been in some cases less than professional in their advice to you and in some cases rude. Not sure where you are (you do mention Pittsburgh at one point) but it doesn't sound like they have great docs wherever you are going. You describe having brain fog at times, and losing track of reality as well.

You have had injuries, multiple surgeries, multiple prescriptions. It's a lot. Maybe someone else will come up with some good ideas for you. Meanwhile, here is my suggestion for now:

You said you are big on journal writing. I hope you have a record of all that you have been through since your troubles started. I would try to organize a detailed list of all of your health issues CHRONOLOGICALLY. List all of your medical visits, what happened at each one and what drugs you were prescribed, also who your doctors were and each of their specialities. Put down how long you took each drug and when you were on each one. Do it from the first to the last (chronologically) because it will help to make better sense of everything.

I would NOT include your emotional/relationship issues that you have described. Just the medically oriented info. That way your issues will be clearer for the GOOD doctor you are going to see, hopefully soon. I am sorry for all that has happened to you, it is a very sad story. I do hope someone will help you. All that we on Mayo Connect can do is try to make suggestions that might help.

Keep posting, you are doing great at that! Hank

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1 reply
avmcbellar | @avmcbellar | Sep 11, 2020
In reply to @bustrbrwn22 "@avmcbellar @jesfactsmon Success!!! A full nights sleep with the magnesium. We’ll see what tonight brings. I..." + (show)
@bustrbrwn22

@avmcbellar @jesfactsmon Success!!! A full nights sleep with the magnesium. We’ll see what tonight brings. I have myofascial therapy at 4 pm CST today so I am curious to see how I feel after. My pain level is only at a 6 right now.

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@bustrbrwn22 good to hear! I hope to get successful results as you did when it arrives. Thanks for letting me know. I appreciate it. Glad you tried it. Now you can feel rested. Take care of yourself. Toni

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Hank | @jesfactsmon | Sep 11, 2020
In reply to @rwinney "To all my neuropathy friends looking for an uplifting story this morning: https://www.foundationforpn.org/2020/09/09/mike-mcdonoughs-story-neuropathy-warrior/ May you all..." + (show)
@rwinney

To all my neuropathy friends looking for an uplifting story this morning:
https://www.foundationforpn.org/2020/09/09/mike-mcdonoughs-story-neuropathy-warrior/
May you all find peace and some level of comfort today.
Rachel

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@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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2 replies
Hank | @jesfactsmon | Sep 11, 2020
In reply to @jesfactsmon "@rwiney Except for knowing it is a guy named Mike, I could easily see this being..." + (show)
@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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avmcbellar | @avmcbellar | Sep 11, 2020
In reply to @johnbishop "Hi Laura @david33, You ask questions that I'm sure we have all had on our journey..." + (show)
@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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1 reply
steeldove | @steeldove | Sep 11, 2020
In reply to @jesfactsmon "@david33 Laura, I want to extend a warm welcome to you. Everyone here knows plenty about..." + (show)
@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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Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 11, 2020
In reply to @jesfactsmon "@rwiney Except for knowing it is a guy named Mike, I could easily see this being..." + (show)
@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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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 11, 2020
In reply to @avmcbellar "@johnbishop Hi John, thank you, you have provided a great resource for finding foods as a..." + (show)
@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

Jump to this post

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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6 replies
Lee Aase | @LeeAase | Sep 11, 2020
In reply to @johnbishop "Hi Toni @avmcbellar, The Foundation for Peripheral Neuropathy has a great list that talks about nutrition..." + (show)
@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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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 11, 2020
In reply to @rwinney "@jesfactsmon Hi Hank! It was very inspiring and I felt as though it could me telling..." + (show)
@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.

Jump to this post

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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