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.

ashley302 | @ashley302 | Oct 2, 2019
In reply to @rwinney "Ah yes, I'm sorry, you said you were idiopathic. And you mentioned 2 years...is that how..." + (show)
@rwinney

Ah yes, I'm sorry, you said you were idiopathic. And you mentioned 2 years...is that how long ago you were diagnosed?

I have had b12 deficiency and unfortunately do not believe it was found early enough for nerve regeneration. I feel Drs sometimes want to keep a window of hope open.

Truth is there is no sure bet with SFN.

Keeping hope alive for slowing progression and comfort each day.

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I kinda new I had it before all the testing was done but pushed for the biopsy just recently to get the official diagnosis which was a few months ago. Yeah it's amazing how Doctor's know so little about the disease and no cure for it. I'm staying hopeful though.

Do you take one medication for yours and has your pain stayed the same level this whole time?

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1 reply
helennicola | @helennicola | Oct 2, 2019
In reply to @ashley302 "I kinda new I had it before all the testing was done but pushed for the..." + (show)
@ashley302

I kinda new I had it before all the testing was done but pushed for the biopsy just recently to get the official diagnosis which was a few months ago. Yeah it's amazing how Doctor's know so little about the disease and no cure for it. I'm staying hopeful though.

Do you take one medication for yours and has your pain stayed the same level this whole time?

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Hi Ashley, so sorry you are going through this also at such a young age, hopefully it won’t progress. You might try R Ala (-alpha lipoic acid) and epsom salt soaks, they help me and can’t hurt. Helen

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jeffrapp | @jeffrapp | Oct 2, 2019
In reply to @ashley302 "Thank you for sharing. Yeah the hardest part I feel like is accepting it. As far..." + (show)
@ashley302

Thank you for sharing. Yeah the hardest part I feel like is accepting it.

As far as early stages how can there be nerve regeneration? I understand if you find the root cause then there's a possibility for recovering and correcting the problem.

Is your type of neuropathy idiopathic or did you get any reverse in your symptoms?

Definitely support will be helpful because it's hard to cope with this condition and not having people that can relate to you.

Thanks for much Rachel.

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Hi Ashley
I'm also very sorry you have developed peripheral neuropathy, especially at such a young age.
I have almost the exact same symptoms as you do. I've been playing around with various treatments, none of which have worked very well. I'm still experimenting, and will certainly post here if something good comes up.
Have you been seen at a tertiary care center like Mayo or a university? If not, they may have some answers, especially since you're so young.
What has worked for me a little is to wear sheepskin lined shoes like Ugg. It seems to delay the onset of burning, and make it a little less severe.
Also. when I can, I wear flip flops (with sheepskin soles that I insert myself).
Keep trying different things.
Don't be angry at the doctors (I'm one myself). This is a perplexing disease that they freely admit they don't usually have the answers for. Anger does no good, and will likely make you worse. At your age, I bet they'll come up with something eventually.

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3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Oct 2, 2019
In reply to @jeffrapp "Hi Ashley I'm also very sorry you have developed peripheral neuropathy, especially at such a young..." + (show)
@jeffrapp

Hi Ashley
I'm also very sorry you have developed peripheral neuropathy, especially at such a young age.
I have almost the exact same symptoms as you do. I've been playing around with various treatments, none of which have worked very well. I'm still experimenting, and will certainly post here if something good comes up.
Have you been seen at a tertiary care center like Mayo or a university? If not, they may have some answers, especially since you're so young.
What has worked for me a little is to wear sheepskin lined shoes like Ugg. It seems to delay the onset of burning, and make it a little less severe.
Also. when I can, I wear flip flops (with sheepskin soles that I insert myself).
Keep trying different things.
Don't be angry at the doctors (I'm one myself). This is a perplexing disease that they freely admit they don't usually have the answers for. Anger does no good, and will likely make you worse. At your age, I bet they'll come up with something eventually.

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@jeffrapp - Thank you for this great post. @ashley302 and other members, I recently was made aware of a website that I think can be helpful for a lot of patients and doctors - https://patientrevolution.org/ which was founded by Dr. Victor Montori. I watched his interview and was really impressed. I wished all doctors had the same philosophy.

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 2, 2019
In reply to @jeffrapp "Hi Ashley I'm also very sorry you have developed peripheral neuropathy, especially at such a young..." + (show)
@jeffrapp

Hi Ashley
I'm also very sorry you have developed peripheral neuropathy, especially at such a young age.
I have almost the exact same symptoms as you do. I've been playing around with various treatments, none of which have worked very well. I'm still experimenting, and will certainly post here if something good comes up.
Have you been seen at a tertiary care center like Mayo or a university? If not, they may have some answers, especially since you're so young.
What has worked for me a little is to wear sheepskin lined shoes like Ugg. It seems to delay the onset of burning, and make it a little less severe.
Also. when I can, I wear flip flops (with sheepskin soles that I insert myself).
Keep trying different things.
Don't be angry at the doctors (I'm one myself). This is a perplexing disease that they freely admit they don't usually have the answers for. Anger does no good, and will likely make you worse. At your age, I bet they'll come up with something eventually.

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Ashley,

As warm as it was outside the other day here in NY, I had no choice for my paining feet but to wear my daughters Ugg boots!

They were the hotness when she so desperately wanted 2 pairs a few years back (age 14).

They are old and beat down but... ya gotta do what ya gotta do. So, I strolled into the hospital wearing Ugg boots for my lidocaine infusion and my nurse said, "Wow, it got that cold out already?!"

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1 reply
specialty555 | @specialty555 | Oct 2, 2019
In reply to @rwinney "Ashley, As warm as it was outside the other day here in NY, I had no..." + (show)
@rwinney

Ashley,

As warm as it was outside the other day here in NY, I had no choice for my paining feet but to wear my daughters Ugg boots!

They were the hotness when she so desperately wanted 2 pairs a few years back (age 14).

They are old and beat down but... ya gotta do what ya gotta do. So, I strolled into the hospital wearing Ugg boots for my lidocaine infusion and my nurse said, "Wow, it got that cold out already?!"

Jump to this post

Hi Ashley!! My feet have been so painful lately also. I know what you mean when you find something that works stick with it. Does the lidocaine infusion help you? How often do you have them? Feel better and take care. Lynn

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1 reply
tigreyes2004 | @tigreyes2004 | Oct 2, 2019
In reply to @ashley302 "I'm 27 years old and I've been dealing with SFN for over a year now. Had..." + (show)
@ashley302

I'm 27 years old and I've been dealing with SFN for over a year now. Had the biopsy to confirm and tried various antidepressants. Currently I decided to stop taking medication because I don't want to be on anything. I'm so young and don't understand why this has happened as I'm sure many of you feel. I've always been healthy and don't have diabetes or any known cause. It's so frustrating and every day is a battle to be positive. Some days i'm depressed and others I'm mad. At this point i don't know if I should even see anymore doctors because it's the same drill as in they can't do anything or don't know the cause.

For natural remedies what has worked for relief?
Also have your symptoms of SFN gotten worse?

Acupuncture - don't think it's helped at all.
I've been trying drinking celery juice every day, giving that more time.
Eat lots of fruits and veggies through out the day.

Thank you for your support and tips.

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I understand bc I am going through the same thing. The dr's are all puzzled & all I get is the run around. I know how you feel. Best of luck.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 2, 2019
In reply to @specialty555 "Hi Ashley!! My feet have been so painful lately also. I know what you mean when..." + (show)
@specialty555

Hi Ashley!! My feet have been so painful lately also. I know what you mean when you find something that works stick with it. Does the lidocaine infusion help you? How often do you have them? Feel better and take care. Lynn

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Hi Lynn
This Is Rachel and yes lidocaine infusions do bring me a percentage of relief.

REPLY
iceblue | @iceblue | Oct 2, 2019
In reply to @ashley302 "Hi, I'm sorry for yours too. I've taken drugs in the past months but it only..." + (show)
@ashley302

Hi, I'm sorry for yours too. I've taken drugs in the past months but it only helped with my mood my really my pain so I didn't see why I should take it. I just cope with it. Some days are worse than others as far as the burning pain. It's definitely uncomfortable and seems that when I don't wear any socks or shoes it feels alleviated. Not sure if that's common with SFN?

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I used to wear socks and wool-lined leather slippers in the house, but over the past 6 months I find myself kicking off both the slippers AND my socks more often than not. I told my Neurologist that our cool ceramic tile floors have started to feel REALLY good against my feet, and he said that is quite common. He told me of one patient who had been known to stand in the snow. Yikes! I hope my feet don't get THAT bad 😮

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1 reply
Leonard | @jakedduck1 | Oct 2, 2019
In reply to @iceblue "I used to wear socks and wool-lined leather slippers in the house, but over the past..." + (show)
@iceblue

I used to wear socks and wool-lined leather slippers in the house, but over the past 6 months I find myself kicking off both the slippers AND my socks more often than not. I told my Neurologist that our cool ceramic tile floors have started to feel REALLY good against my feet, and he said that is quite common. He told me of one patient who had been known to stand in the snow. Yikes! I hope my feet don't get THAT bad 😮

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@iceblue
Some people have been saying they take off shoes.
First thing I do is put them on. At bedtime I take them off. A little while later I try taking them off again. You’d think I’d lean but after nearly 40 years not much hope I’m afraid.
Jake

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