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.

Debbie | @dbeshears1 | Jan 29, 2022
In reply to @runnergirl "Hi, @dbeshears1 - I just saw these Bombas slipper socks advertised - maybe they'd be helpful..." + (show)
@runnergirl

Hi, @dbeshears1 - I just saw these Bombas slipper socks advertised - maybe they'd be helpful for you? https://bombas.com/collections/womens-slippers

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Thank you - I will look at them!

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athenalee | @athenalee | Jan 29, 2022
In reply to @dbeshears1 "Hi! Welcome to the group as you start this journey. You mentioned wearing padded socks. I..." + (show)
@dbeshears1

Hi! Welcome to the group as you start this journey. You mentioned wearing padded socks. I am searching for good ones to especially walk around the house with, and to sleep in so I can easily walk to the bathroom in the middle of the night. I can’t walk barefoot without discomfort, and I just haven’t found the right socks with padding in heels and toes. Do you have a recommendation for what works with you? Thanks, Debbie

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Hello Debbie, I posted about Bombas sock previously. I wear them as the gripper bottoms offer a light massage on my feet. They are well made and long lasting. I hang dry them to help them last longer.

I’m also wear the Bombas gripper slipper. The slippers are amazingly comfortable as well.

Athena

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emf21 | @emf21 | Jan 31, 2022

I found the Bombas slippers to be too expensive at least for us to afford.

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1 reply
Debbie | @dbeshears1 | Feb 1, 2022
In reply to @runnergirl "Hi, @dbeshears1 - I just saw these Bombas slipper socks advertised - maybe they'd be helpful..." + (show)
@runnergirl

Hi, @dbeshears1 - I just saw these Bombas slipper socks advertised - maybe they'd be helpful for you? https://bombas.com/collections/womens-slippers

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Just wondering if you’ve tried Thorlo thick socks, and if so, how they compare to Bombas? I used to run my races in Thorlos (not the thin socks) I wear old ones I have now as house socks, but they’re getting worn. I love Bomba’s charity matching sock program, but couldn’t easily tell from website how cushioned the heels and toes were - I just saw arch support info.

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1 reply
runnergirl | @runnergirl | Feb 1, 2022

@dbeshears1 - I like other brands for jogging. I just thought the Bomba's slippers would be a good option for around-the-house non-slip wear. I haven't purchased them for myself yet, so can't really give an opinion.

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dantic123 | @dantic123 | Feb 2, 2022
In reply to @pyrifera "Hello all, 38yo newly diagnosed with small fiber neuropathy with hyperesthesia and tremors in my arms..." + (show)
@pyrifera

Hello all, 38yo newly diagnosed with small fiber neuropathy with hyperesthesia and tremors in my arms and legs. I thankfully have a very good neurologist. I have gotten some relief from the hyperesthesia in the last few months from 300mg Gabapentin enacarbil each morning and night, with 300mg Gabapentin in the middle of the day. I use CBD balm and take 30mg CBD in oil twice a day, which helps with the tremors. I wear padded gloves and padded socks to minimize the sensations on my hands and feet. Hoping to have a skin biopsy later this year to see if I can get a test that affirmatively says I have SFN instead of just a diagnosis by exclusion. Glad this community exists.

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I have done all the above and more for my neuropathy . I am just nearing my 70th birthday and always was told by doctors that there is no remedy or cure. I am on a zoom call with many people who have neuropathy once a month, and a few months ago a Dr. by the name of Jacoby in Scottsdale gave a presentation on small fiber neuropathy and how he and his colleges developed a procedure to operate and relieve the nerve pain. I am now in week three and to have my staples taken out of the areas in concern that the Dr. thought needed it the most. I have high expectations so far that the procedure was a success. Probably will not be able to make a full recovery review until a month or so. As of now I cannot believe the less pain I have in the leg and foot that was bothering me for the last 50 plus years. He considered me a severe case but felt he could make me a high percentage of relief . Looking forward to getting back into my Montana Mountains soon!

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1 reply
windsorchris | @windsorchris | Feb 3, 2022

damn, I'm so happy you have a shot at getting back to the mountains. they're waiting for you.

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3 replies
govisri | @govisri | Feb 3, 2022
In reply to @dantic123 "I have done all the above and more for my neuropathy . I am just nearing..." + (show)
@dantic123

I have done all the above and more for my neuropathy . I am just nearing my 70th birthday and always was told by doctors that there is no remedy or cure. I am on a zoom call with many people who have neuropathy once a month, and a few months ago a Dr. by the name of Jacoby in Scottsdale gave a presentation on small fiber neuropathy and how he and his colleges developed a procedure to operate and relieve the nerve pain. I am now in week three and to have my staples taken out of the areas in concern that the Dr. thought needed it the most. I have high expectations so far that the procedure was a success. Probably will not be able to make a full recovery review until a month or so. As of now I cannot believe the less pain I have in the leg and foot that was bothering me for the last 50 plus years. He considered me a severe case but felt he could make me a high percentage of relief . Looking forward to getting back into my Montana Mountains soon!

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It would be great if you can provide more details about the doctor in Scottsdale and the surgery procedure. Thanks.

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1 reply
dantic123 | @dantic123 | Feb 3, 2022
In reply to @windsorchris "damn, I'm so happy you have a shot at getting back to the mountains. they're waiting..." + (show)
@windsorchris

damn, I'm so happy you have a shot at getting back to the mountains. they're waiting for you.

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I thought my youth was running out when at age 60 the pain of neuropathy finally put me down to the point I could not travel the trails anymore. I probably put in over 200 miles in the Beartooth Mountains just 45 miles away. I feel confident that the surgery on my left leg and foot is going to be in a betterment of 50% or better. I have to wait a month and then see if Dr. Jacoby will finish the left leg and foot with a high percentage of success as the right. Family comes first and the hikes with them again will be so rewarding. I suggest anyone wanting to visit with Dr. Jacoby and see if this right for you just look him up in Scottsdale.

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1 reply
dantic123 | @dantic123 | Feb 3, 2022
In reply to @dantic123 "I thought my youth was running out when at age 60 the pain of neuropathy finally..." + (show)
@dantic123

I thought my youth was running out when at age 60 the pain of neuropathy finally put me down to the point I could not travel the trails anymore. I probably put in over 200 miles in the Beartooth Mountains just 45 miles away. I feel confident that the surgery on my left leg and foot is going to be in a betterment of 50% or better. I have to wait a month and then see if Dr. Jacoby will finish the left leg and foot with a high percentage of success as the right. Family comes first and the hikes with them again will be so rewarding. I suggest anyone wanting to visit with Dr. Jacoby and see if this right for you just look him up in Scottsdale.

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Dr. Jacoby and I visited about the many people with Neuropathy in and around my community who might be a candidate for this procedure. He encourages any calls at 1-480-994-5977. This office is located Scottsdale AZ. Suite 200 . My surgery was done at the North Valley Surgery Center. Mine was an in and out procedure and was glad we stayed a few extra days to enjoy the incredible weather and sites. Hobbling along was limited but transportation in the carts worked out well.

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