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.

@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/

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