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.

Mentor
John, Volunteer Mentor | @johnbishop | Mar 26, 2019
In reply to @johnnyb "I tried to 'unsubscribe'. I can't keep up with all the emails." + (show)
@johnnyb

I tried to 'unsubscribe'. I can't keep up with all the emails.

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@johnnyb, the Get Started on Connect guide has step by step instructions for how to subscribe or unsubscribe to emails. There is a link to the Get Started on Connect guide at the bottom of every Connect page in the left most column of the footer. Here are links to both topics in the guide.

How to Subscribe or Unsubscribe from a Discussion:
-- https://connect.mayoclinic.org/get-started-on-connect/#subscribe-unsubscribe-discussion

How to Stop or Restart all Notifications
-- https://connect.mayoclinic.org/get-started-on-connect/#stop-restart-notifications

REPLY
dabshire | @dabshire | Mar 27, 2019
In reply to @artscaping "@dancermurphy Goid morning. It might help to tell you that I also experienced those symptoms after..." + (show)
@artscaping

@dancermurphy Goid morning. It might help to tell you that I also experienced those symptoms after starting neurontin. My neurologist modified the time and dosage. The symptoms of grasping for words, feeling fuzzy, and unbalanced, stopped as my body adjusted to the medication and dosage time. Maybe time and an adjustment will help soothe your fears. Be safe and protected today. Chris

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I was told I have Diabetic Neuropathy..Im still so confused since I was fine until I had this knee surgery..I was prescribed gabapentin..I took one last night and felt like every nerve in my body was on fire. Has anyone experienced this. I am at a loss. I almost drovw myself to hospital as my throat felt tight and I was hurting so bad. Any suggestions would be so appreciated. This is all new to me.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 27, 2019
In reply to @dabshire "I was told I have Diabetic Neuropathy..Im still so confused since I was fine until I..." + (show)
@dabshire

I was told I have Diabetic Neuropathy..Im still so confused since I was fine until I had this knee surgery..I was prescribed gabapentin..I took one last night and felt like every nerve in my body was on fire. Has anyone experienced this. I am at a loss. I almost drovw myself to hospital as my throat felt tight and I was hurting so bad. Any suggestions would be so appreciated. This is all new to me.

Jump to this post

@dabshire, were you diagnosed with diabetic neuropathy by a neurologist? I would give you doctor a call and make sure they know your pain level after you took the gabapentin which is supposed to help with the pain.

REPLY
1 reply
grandmaR | @grandmar | Mar 27, 2019

Good Morning All!!

I have what might sound like a strange question.
I have neuropathy in my feet and issues with my ankles.
My toes turn a dark purple when they are hanging, even when supported. (Been through tests already)
I go for a pedicure every 3-4 weeks (vanity reasons 🙂 ).
I've noticed over the last two or three months that my pedis are not lasting because my toenails keep breaking (usually down, not across).
This is very unusual and I've been going to the same person for a few years.
My toenails rarely break (unless I bang into something and even then they won't always break) and I keep them as short as can be.
No changes to the procedures or polish.

Does anyone else have an issue with their toenails breaking more frequently?

Hope this is not TMI...….
Ronnie (GRANDMAr)

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Mar 27, 2019
In reply to @grandmar "Good Morning All!! I have what might sound like a strange question. I have neuropathy in..." + (show)
@grandmar

Good Morning All!!

I have what might sound like a strange question.
I have neuropathy in my feet and issues with my ankles.
My toes turn a dark purple when they are hanging, even when supported. (Been through tests already)
I go for a pedicure every 3-4 weeks (vanity reasons 🙂 ).
I've noticed over the last two or three months that my pedis are not lasting because my toenails keep breaking (usually down, not across).
This is very unusual and I've been going to the same person for a few years.
My toenails rarely break (unless I bang into something and even then they won't always break) and I keep them as short as can be.
No changes to the procedures or polish.

Does anyone else have an issue with their toenails breaking more frequently?

Hope this is not TMI...….
Ronnie (GRANDMAr)

Jump to this post

Good morning @grandmar -- my wife saw a supplement that I was taking (Collagen Hydrolysate) for joints and bones and she saw that it was good for hair and nails. She started taking it too and within a few weeks she said her nails were growing better and not breaking off. I do notice that it helps with my fingernails which I've always had issues with breaking when I don't keep them trimmed.

Here's the one I take: https://amzn.to/2U1wnTW

REPLY
2 replies
grandmaR | @grandmar | Mar 27, 2019
In reply to @johnbishop "Good morning @grandmar -- my wife saw a supplement that I was taking (Collagen Hydrolysate) for..." + (show)
@johnbishop

Good morning @grandmar -- my wife saw a supplement that I was taking (Collagen Hydrolysate) for joints and bones and she saw that it was good for hair and nails. She started taking it too and within a few weeks she said her nails were growing better and not breaking off. I do notice that it helps with my fingernails which I've always had issues with breaking when I don't keep them trimmed.

Here's the one I take: https://amzn.to/2U1wnTW

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@johnbishop
Thanks John!
I take Biotin and it has worked for the last couple of years.
Fingernails are not my problem, it's the toenails.
Hey, I'll look into it!!!
Thanks again!
Ronnie

REPLY
dabshire | @dabshire | Mar 27, 2019
In reply to @johnbishop "@dabshire, were you diagnosed with diabetic neuropathy by a neurologist? I would give you doctor a..." + (show)
@johnbishop

@dabshire, were you diagnosed with diabetic neuropathy by a neurologist? I would give you doctor a call and make sure they know your pain level after you took the gabapentin which is supposed to help with the pain.

Jump to this post

No Neurologist, it was my primary dr. I made an appt to go back to surgeon. I had a bakers cyst on back of knee and it was not removed during surgery and not sure why. Was told it would go away with the healing. It is driving me insane to have this constant pressure behind my knee. I need some answers so I thought I would go back to where it started.

REPLY
1 reply
JK | @contentandwell | Mar 27, 2019
In reply to @grandmar "Good Morning All!! I have what might sound like a strange question. I have neuropathy in..." + (show)
@grandmar

Good Morning All!!

I have what might sound like a strange question.
I have neuropathy in my feet and issues with my ankles.
My toes turn a dark purple when they are hanging, even when supported. (Been through tests already)
I go for a pedicure every 3-4 weeks (vanity reasons 🙂 ).
I've noticed over the last two or three months that my pedis are not lasting because my toenails keep breaking (usually down, not across).
This is very unusual and I've been going to the same person for a few years.
My toenails rarely break (unless I bang into something and even then they won't always break) and I keep them as short as can be.
No changes to the procedures or polish.

Does anyone else have an issue with their toenails breaking more frequently?

Hope this is not TMI...….
Ronnie (GRANDMAr)

Jump to this post

@grandmar Not TMI at all. I had been taking biotin for my hair but the bottle says hair and nails so that might help. Right now my fingernails are flaking terribly, and with this topic, I remembered I had not taken it for a long time! One thing to remember with biotin is that if you go for TSH tests you need to stop taking it a few days before. It does not cause a problem with the medication or anything, it causes inaccurate test results.
I find they don't flake as much when I do keep something on them. I spend about 6 hours a week in the pool at my club and I think that's rough on my nails. I have not had a problem with them splitting vertically though.
JK

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Mar 27, 2019
In reply to @johnbishop "Good morning @grandmar -- my wife saw a supplement that I was taking (Collagen Hydrolysate) for..." + (show)
@johnbishop

Good morning @grandmar -- my wife saw a supplement that I was taking (Collagen Hydrolysate) for joints and bones and she saw that it was good for hair and nails. She started taking it too and within a few weeks she said her nails were growing better and not breaking off. I do notice that it helps with my fingernails which I've always had issues with breaking when I don't keep them trimmed.

Here's the one I take: https://amzn.to/2U1wnTW

Jump to this post

@johnbishop, @grandmar Wow, this is good information. I have recently lost a toenail and had my fingernails start to break and peel. It may be the boniva medication. I will look into this possible solution and discuss with my Primary care provider (PCP). Thanks.

REPLY
1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Mar 27, 2019
In reply to @dabshire "No Neurologist, it was my primary dr. I made an appt to go back to surgeon...." + (show)
@dabshire

No Neurologist, it was my primary dr. I made an appt to go back to surgeon. I had a bakers cyst on back of knee and it was not removed during surgery and not sure why. Was told it would go away with the healing. It is driving me insane to have this constant pressure behind my knee. I need some answers so I thought I would go back to where it started.

Jump to this post

@dabshire, @johnbishop I am confused. I thought baker’s cysts formed when the knee was inflamed or the meninges was torn and acting up. Sort of like our body trying to help us heal. If that is true, then the purpose of the surgery would be to fix you so you don’t get baker’s cysts any more. Mine went away as a result of the knee replacement surgery. Before the surgery, I had it drained several times and it came right back. Help me with this one. And may we all be free of suffering.....today and let’s hope tomorrow. Chris

REPLY
2 replies
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