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.

@fruitcake

Meds for neuropathy. Any new ones

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Good afternoon @fruitcake. Welcome to Connect. As mentors, we focus on improving the quality of life for every member. Without a medical background, we cannot diagnose or prescribe. What we can do is share our personal experiences and introduce you to others who may have something to share with you.

What neuropathy meds are you using now? And one more question....what type of neuropathy are you experiencing?

May you be safe and protected from inner and outer harm?

Chris

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@johnbishop

Hello @andrewbar, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. There is another discussion where members have shared their journey with neuropathy and what has helped them. You might want to read through the discussion to learn what others have shared.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Are you able to share what treatments you have tried and if they offered any relief at all for your symptoms?

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No one has discussed footwear which is an integral part of daily life and our painful disability. I wear new balance or ASICS sneakers most of the time. I just purchased an ugly Ecco sandal and it is wonderful. My foot is supported in arch, balls. I never thought I would find an appropriate sandal for the intense heat.

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@rdelfin

No one has discussed footwear which is an integral part of daily life and our painful disability. I wear new balance or ASICS sneakers most of the time. I just purchased an ugly Ecco sandal and it is wonderful. My foot is supported in arch, balls. I never thought I would find an appropriate sandal for the intense heat.

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There are two discussions you might find helpful.
-- Does anyone find that a type of shoe helps your foot neuropathy?: https://connect.mayoclinic.org/discussion/does-anyone-find-that-a-brand-of-shoes-helps-your-foot-neuropathy/
-- If the shoe fits...right?: https://connect.mayoclinic.org/discussion/if-the-shoe-fits-right/

For me, sandals don't work because I need side support of the feet as well as the arch.

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@johnbishop

There are two discussions you might find helpful.
-- Does anyone find that a type of shoe helps your foot neuropathy?: https://connect.mayoclinic.org/discussion/does-anyone-find-that-a-brand-of-shoes-helps-your-foot-neuropathy/
-- If the shoe fits...right?: https://connect.mayoclinic.org/discussion/if-the-shoe-fits-right/

For me, sandals don't work because I need side support of the feet as well as the arch.

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Thanks, @johnbishop. I spent an hour or so at the shoe store yesterday to get ready for my TKR surgery next month. I have always been a New Balance, Munto and Mephisto shopper because I have a high instep and a fat foot. My mother said that was because I went barefoot all the time. And I told her that I was just doing what the cows did.

I also want shoes without laces. Why? Because if the lace comes undone, I don't want to trip over it. Every orthopedic surgeon will tell you, "Don't fall, I can't fix you". I ended up changing to a new company called HOKA.....from France. I haven't had time to research them but the shoes fit like they were made just for me. I will create a post when I have more information.

May you be content and at peace.
Chris

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All of my footwear are Skechers. I have slippers, sliders, sandals, boots, shoes, and trainers. All offer so much comfort.

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@artscaping

Thanks, @johnbishop. I spent an hour or so at the shoe store yesterday to get ready for my TKR surgery next month. I have always been a New Balance, Munto and Mephisto shopper because I have a high instep and a fat foot. My mother said that was because I went barefoot all the time. And I told her that I was just doing what the cows did.

I also want shoes without laces. Why? Because if the lace comes undone, I don't want to trip over it. Every orthopedic surgeon will tell you, "Don't fall, I can't fix you". I ended up changing to a new company called HOKA.....from France. I haven't had time to research them but the shoes fit like they were made just for me. I will create a post when I have more information.

May you be content and at peace.
Chris

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Ooooh please tell us more about Hoka, everything you just said about your feet, habits, and preferences, could have come from me. I am always watching for the next great shoe of comfort.

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@auntieoakley

Ooooh please tell us more about Hoka, everything you just said about your feet, habits, and preferences, could have come from me. I am always watching for the next great shoe of comfort.

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Hi there @auntieoakley, I am also very interested in the Hokaoneone shoes. Here is the link
http://www.hokaoneone.com/womens-view-all

I like their mission and how they have made it work for everyone. I did have them replace the laces with the kind that you don't have to tie. If it is in the '80s, not 90's tomorrow I will give them a try.

Happy 4th.
Chris

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I will go look around, thanks for the link. I am not sure why plantar fasciitis seems to go hand in hand with PN, making it a complicated choice.

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@tcp36c

All of my footwear are Skechers. I have slippers, sliders, sandals, boots, shoes, and trainers. All offer so much comfort.

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I just came from a sketchers store and much to my amazement they had several styles of shoes it fit and felt good… In the store anyway, we’ll see. I was happily able to find a pair of furry Lined slippers because my cold feet and my beautiful cool tile floor Are not a good match. Thought I was going to have to carpet over the tile. The tile feels great on a few occasions when my feet are burning but my feet are usually cold instead of hot

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@johnbishop

Hello @arlenereiss55, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. There is another discussion on stem cell therapy for neuropathy that you might want to read here: Stem Cell Therapy for Neuropathy - https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

My personal opinion is that there is no evidence that it works for neuropathy but it is something a lot of us would like to see more research and treatments done by major hospitals.

Do you have neuropathy? Are you able to share a little more about your diagnosis and symptoms?

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I’ve been reading the comments on neuropathy for the past few months. I have had diabetic peripheral neuropathy for over 15 years. What I don’t see is many comments concerning opioids. I know half the country thinks that opioids are a dirty word but for me they were a godsend that was until I moved to Georgia from Arizona. My PCP in Az prescribed all my prescriptions but in Georgia you have to hunt down a “pain specialist” and the 3 different “specialists” that I’ve had act like they are doing you a big favor by prescribing me maybe 25% of what I was receiving in Az. Just wondering why there isn’t much talk of this on Connect.

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