1. < Neuropathy
Mentor

Member Neuropathy Journey Stories: What's Yours?

Posted by John, Volunteer Mentor @johnbishop, May 12, 2020

This discussion was created as a place for members to share their journey with neuropathy. This will allow members to easily learn from each other what has helped them and hopefully help new members avoid some of the painful and difficult struggles some of us have faced. The following is a suggested outline for sharing your story that would be helpful for other members for comparison to their own neuropathy story.

— When did your neuropathy start? What were the symptoms? When and how was it diagnosed?
— What treatments or medications have you tried?
— What side effects have you had, if any?

Optional:
— What would you tell your best friend if they told you they had neuropathy?
— What activities have you had to give up because of neuropathy? What do you instead?
— How has your life changed socially? at work? at home?

What's your neuropathy story?

Note: If you want to ask a question for another member who has posted their neuropathy story here in this discussion, be sure to add their @membername in your post, for example @johnbishop. Your question may already be discussed in other neuropathy discussions. Be sure to check here first: https://connect.mayoclinic.org/group/neuropathy/ That way this discussion can be reserved for member neuropathy stories and hopefully make it easier to read and find similar symptoms to your own.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Feb 21 4:19pm
In reply to @cynbell "I have idiopathic Peripheral Neuropathy. It started about 2 years ago, pain on bottomes of feet...." + (show)
@cynbell

I have idiopathic Peripheral Neuropathy. It started about 2 years ago, pain on bottomes of feet. Within 8 months it went up both legs to groin area. Gabapenton didn't work, Cymbalta and Lyrica both made me suicidal within days. Epidural steroid injection was of no help. I live in a small community with limited pain Dr's. None if which will prescribe anything narcotic. My Primary did, but is now retired. ANY ideas for help with this horribly painful condition would be so helpful. I'm on SS disability, 62 yrs old and have no quality of life whatsoever. At my wits end and getting depressed.

Jump to this post

Hello @cynbell, I would like to add my welcome along with @blessedsista24 and others. You are not alone and hopefully can find something that helps provide some relief for the neuropathy pain. While you wait for others to respond, you might find it helpful to look through the other discussions on Connect for what helps with neuropathy. Here's a link that lists the different discussions and member comments - https://connect.mayoclinic.org/search/discussions/?search=what%20helps%20with%20neuropathy.

You might also find the Foundation for Peripheral Neuropathy helpful to learn more about the condition and what helps - https://www.foundationforpn.org/living-well/

REPLY
1 reply
cynbell | @cynbell | Feb 22 5:30pm
In reply to @johnbishop "Hello @cynbell, I would like to add my welcome along with @blessedsista24 and others. You are..." + (show)
@johnbishop

Hello @cynbell, I would like to add my welcome along with @blessedsista24 and others. You are not alone and hopefully can find something that helps provide some relief for the neuropathy pain. While you wait for others to respond, you might find it helpful to look through the other discussions on Connect for what helps with neuropathy. Here's a link that lists the different discussions and member comments - https://connect.mayoclinic.org/search/discussions/?search=what%20helps%20with%20neuropathy.

You might also find the Foundation for Peripheral Neuropathy helpful to learn more about the condition and what helps - https://www.foundationforpn.org/living-well/

Jump to this post

Thank you so much! I will check that out and see if there's possibly something I haven't tried. I'm sure there is.

REPLY
dbchip | @dbchip | Feb 22 11:24pm
In reply to @mpaf "Hi, I am in my mid 60's and the past year have had numbness progressing on..." + (show)
@mpaf

Hi, I am in my mid 60's and the past year have had numbness progressing on the bottom of my feet. I have not had any pain associated with the numbness. I am starting to have a little bit of trouble feeling the brake and accelerator in my car. I went to a neurologist and they did a nerve conduction test, which was normal. So, at this stage I do not have a diagnosis. It sounds like changing my diet is worth trying. Are there any topical creams which have been effective? Any input greatly appreciated.

Jump to this post

So if you had a normal EMG-NCS how do you know if you have PN?

REPLY
1 reply
mpaf | @mpaf | Feb 25 2:57pm
In reply to @dbchip "So if you had a normal EMG-NCS how do you know if you have PN?" + (show)
@dbchip

So if you had a normal EMG-NCS how do you know if you have PN?

Jump to this post

Hi, I don't know if I have PN, per se, so that is part of the problem I face (with no clear diagnosis)...

REPLY
1 reply
notborntoburn | @notborntoburn | Feb 26 1:01pm
In reply to @mpaf "Hi, I don't know if I have PN, per se, so that is part of the..." + (show)
@mpaf

Hi, I don't know if I have PN, per se, so that is part of the problem I face (with no clear diagnosis)...

Jump to this post

Hi
I was not medically diagnosed for many years many doctors suggested volunteer work to get my brain to think about something else. At the time I was helping homeless among other things which did not get my brain to "forget" about my constant burning feet which has now crept up to my calves. I did try Botox shots in my feet and legs cramps but alas it did nothing it was not a pleasant experience! Tried Ketamine infusions twice to no relief. Sorry I don't have any hope for any relief but some people find solace in knowing they are not alone on their journey through this painful maze. I commend you for pushing forward for answers have you any nerve conduction tests? That did help the doctors come to an agreement on idiopathic neuropathy. I decided ice cream is the best medicine!!

REPLY
View MoreView Less
Please sign in or register to post a reply.