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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.

helennicola | @helennicola | Sep 11, 2020
In reply to @LeeAase "Hi Helen - it's linked in this post that describes making the yogurt. https://social-media-university-global.org/2020/05/best-yogurt-ever/ I get..." + (show)
@LeeAase

Hi Helen - it's linked in this post that describes making the yogurt. https://social-media-university-global.org/2020/05/best-yogurt-ever/ I get it on Amazon.

And you also should check out John's story, which he contributed to my blog. https://social-media-university-global.org/2020/08/john-bishops-journey/

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Hi Lee, Thanks for the links, I have been following John’s posts for a few years now and am grateful for all of his research. I am not really interested in making my own yogurt, was just curious; I prefer going the supplement route! ☺️ Helen

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2 replies
Lee Aase | @LeeAase | Sep 11, 2020
In reply to @helennicola "Hi Lee, Thanks for the links, I have been following John’s posts for a few years..." + (show)
@helennicola

Hi Lee, Thanks for the links, I have been following John’s posts for a few years now and am grateful for all of his research. I am not really interested in making my own yogurt, was just curious; I prefer going the supplement route! ☺️ Helen

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Supplements are fine in general, but the advantage with the yogurt is that you get trillions of the relevant bacteria vs. perhaps a few hundred million. It's a more economical (and super tasty) way to get your gut microbiome in shape.

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helennicola | @helennicola | Sep 11, 2020

Lee, so the basic difference is you use the supplements to add to your home made yogurt; I’ve never been overly fond of yogurt so I’ll skip all the extra work! I am now doing all the cooking at home that I care to do! 😒 😁 Helen

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Hank | @jesfactsmon | Sep 11, 2020
In reply to @LeeAase "Hi Helen - it's linked in this post that describes making the yogurt. https://social-media-university-global.org/2020/05/best-yogurt-ever/ I get..." + (show)
@LeeAase

Hi Helen - it's linked in this post that describes making the yogurt. https://social-media-university-global.org/2020/05/best-yogurt-ever/ I get it on Amazon.

And you also should check out John's story, which he contributed to my blog. https://social-media-university-global.org/2020/08/john-bishops-journey/

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@johnbishop @LeeAase Thanks for the link, Lee. John, you are even more photogenic than I thought! Very impressive weight loss too. But you were still a pretty good looking man before the weight drop I must say. 😌 Best to you, Hank

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Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 11, 2020
In reply to @helennicola "Hi Lee, Thanks for the links, I have been following John’s posts for a few years..." + (show)
@helennicola

Hi Lee, Thanks for the links, I have been following John’s posts for a few years now and am grateful for all of his research. I am not really interested in making my own yogurt, was just curious; I prefer going the supplement route! ☺️ Helen

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@helennicola I'm with on that, girl!

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sunnyflower | @sunnyflower | Sep 11, 2020
In reply to @jimhd "@sunnyflower @bustrbrwn22 @jesfactsmon Thank you all for your concern and encouragement. @sunnyflower. The reaction was just..." + (show)
@jimhd

@sunnyflower @bustrbrwn22 @jesfactsmon

Thank you all for your concern and encouragement.

@sunnyflower. The reaction was just related to Lyrica, and everything went back to normal after being off it for 2 days. That's the first time anything like that has happened to me. When I start a new medication I'm aware of the effects they have the first few weeks - usually cognitive deficit and maybe drowsiness - but as my body adjusts to it, those things fade away.

My way of dealing with suicidal thoughts: I think about how it would impact my wife and family; I tell myself I will stay safe until...whatever goal I have, usually an upcoming visit with our kids and grandchildren; I promise myself to put the thoughts on hold until tomorrow.

Hank, I've never owned a gun, which is probably a good thing, since that's the most common method for men. Pills are usually readily accessible for me, so that's been my mode. @bustrbrwn22. 200 sleeping pills! Someone found you? I'm sure that's why your doctors don't want to prescribe narcotics for you. They care about your safety. Have you ever been able to set goals for staying alive? When I started doing that, I could only project to one day, and after some months of that I could do a week, and so on. Being able to set a goal 6 months out was a big accomplishment.

I know that when neuropathy pain got bad it affected my depression and suicidality. There's an ongoing link between pain and mental ill-health for me. I talk with my therapist about that often.

Gotta quit for tonight. Thanks again, everyone.

Jim

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Hey Jim, I think the same thoughts about my family, especially my husband and grandkids, when I can't take it anymore and want the suffering to be over. I'm such a cheerful, positive, warm person that I know it would devistate them. My grands are clueless about my illnesses and pain bc I 'm always so happy to see them and they put a huge smile on my face.

I find people are a great distraction from my pain.

Be well and thank you, Sunnyflower

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sunnyflower | @sunnyflower | Sep 11, 2020
In reply to @bustrbrwn22 "@jimhd thanks for sharing. Suicide is a daily desire so I have to work hard to..." + (show)
@bustrbrwn22

@jimhd thanks for sharing. Suicide is a daily desire so I have to work hard to remember what I should live for.

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I wonder how common that is for our afflictions? Seems pretty common. The unrelenting pain makes me fight for my sanity, too frequently. My heart sinks to hear that you feel this way too. 😥. Sunnyflower

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sunnyflower | @sunnyflower | Sep 11, 2020
In reply to @bustrbrwn22 "Hi Laura @david33 Welcome. I am leary of gabapentin as the cure for all pain. I..." + (show)
@bustrbrwn22

Hi Laura @david33
Welcome. I am leary of gabapentin as the cure for all pain. I have suffered nasty side effects so I would definitely get a second opinion or ask your doctor about other options. Your symptoms sound serious. Might a gastroenterologist be an option. Please keep us posted

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Hello Laura, so great to have you here! They are using Gabapentin for pain now, in hospitals! No idea about doses, I 'm sure it's individualized.

I find it gaba dulls my pain or is it me perception of it? I can still always feel it's there. I have terrible side-effects that I hate ever since 100mg twice daily. Now only taking 800mg total; 200mg three times daily. Impaired coordination and balance, sometimes poor judgment,
problems with tracking, memory, getting words out, eye disturbances, etc. And I 'm taking a sub-therapeutic dose!

Laura, I worked in patient care for 20 years. I agree that you need a work-up by a GI doc. I believe in specialty medicine!!!

I wish you the very, very best in every way! I will be praying that you will be accurately diagnosed and that there is a non-toxic, non-invasive treatment for you. Many blessings, Sunnyflower. 😊🙏

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sunnyflower | @sunnyflower | Sep 11, 2020
In reply to @bustrbrwn22 "We are here for you Laura. One day at a time." + (show)
@bustrbrwn22

We are here for you Laura. One day at a time.

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@david33. Hi Laura, I can't recall if I welcomed you to the group so forgive if this is a repeat. Welcome to the group!!!!!!!!!!!!! I know you will find a lot of support and caring here as have I. Also a lot of great info!!!! My hope for you are that you find the encouragement and help that you need here. May God richly bless you and give you His comfort and peace through Christ that surpasses all human understanding, Philippians 4:7, which is what gets me though. Warmest regards, Sunnyflower

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sunnyflower | @sunnyflower | Sep 11, 2020
In reply to @johnbishop "Thanks Lee! My weekly weight chart looks like a bad EKG but then I have to..." + (show)
@johnbishop

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 John, so I may have just learned that unless I had included your Mayo name @johnbiship, somewhere in my message, that you would not have gotten my zillions of messages I've sent you over time. I may be misunderstanding but will find out sometime soon when I asked about that in response to what someone told me. I may have misunderstood them. Yikes. Well, congrats on your weight loss and you gave me a chuckle saying your weight chart looks lilke a bad EKG! I can relate! Keep up the good work! Fondly, Sunnyflower

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