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.

rangersfcando | @rangersfcando | Aug 28, 2021

Are their any reliefs for the pain that are not "quackpot" drugs advertised on social media?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 28, 2021
In reply to @rangersfcando "Are their any reliefs for the pain that are not "quackpot" drugs advertised on social media?" + (show)
@rangersfcando

Are their any reliefs for the pain that are not "quackpot" drugs advertised on social media?

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@rangersfcando - You are right, there are a lot of scam artists looking to get our money and it's up to each of us to do our homework and identify. There is a discussion on How do you identify trustworthy health information that you might find helpful - https://connect.mayoclinic.org/discussion/how-do-you-identify-trustworthy-health-information/

Have you read through the posts by other members on what they have shared helps their neuropathy?
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Also, I've shared this one before but you may not have seen it - Foundation for Peripheral Neuropathy - Maintaining a Healthy Lifestyle: https://www.foundationforpn.org/living-well/lifestyle/

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bustrbrwn22 | @bustrbrwn22 | Aug 28, 2021
In reply to @bustrbrwn22 "@cantab. OKG. Thank you so much. My PCP said gabapentin could not have caused my seizures...." + (show)
@bustrbrwn22

@cantab. OKG. Thank you so much. My PCP said gabapentin could not have caused my seizures. Too late for me know. Don’t medical practitioners have access to this stuff?

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Sorry my tremors. OMG.

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Mentor
John, Volunteer Mentor | @johnbishop | Aug 28, 2021
In reply to @cantab "https://www.fda.gov/drugs/fda-drug-safety-podcasts/fda-warns-about-serious-breathing-problems-seizure-and-nerve-pain-medicines-gabapentin-neurontin" + (show)

Hello @cantab, I see you've been a member for a little while but this is your first post. Thank you for sharing the FDA warning about potential breathing problems with gabapentin and other seizure and nerve pain medications.

Are you currently being treated for neuropathy?

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1 reply
cantab | @cantab | Aug 28, 2021
In reply to @johnbishop "Hello @cantab, I see you've been a member for a little while but this is your..." + (show)
@johnbishop

Hello @cantab, I see you've been a member for a little while but this is your first post. Thank you for sharing the FDA warning about potential breathing problems with gabapentin and other seizure and nerve pain medications.

Are you currently being treated for neuropathy?

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Yes, I'm being treated for PN. My pain is in my knees, never had foot pain. Just started Gabapentin 100MG. Was taking mj 50/50.

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ddotnejtleo | @ddotnejtleo | Aug 28, 2021
In reply to @kevinking "Glad to see this group. I have idiopathic sensorimotor axonal polyneuropathy, which means, in my case,..." + (show)
@kevinking

Glad to see this group. I have idiopathic sensorimotor axonal polyneuropathy, which means, in my case, that both my legs are weak and sometimes my feet hurt, but there is no known cause of the neuropathy and no known cure.
Sometimes I experience the most foot pain lying in bed. I have been offered gabapentin, but in my experience that drug was not helpful.
I also understand that alcohol may exacerbate neuropathy, so I stoped all alcohol intake; however, I haven't seen any improvement yet.
I had a laminectomy at L4-L5. That had the possibility of easing the neuropathy, but it didn't.
What's next? Don't know.
Kevin

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Hi Kevin. I'm not good with all the names but your symptoms sound pretty much like me and what you're doing. Yeah I have no answers either I even had back surgery once for it so they could help me I didn't I don't think there is anything.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 29, 2021
In reply to @ddotnejtleo "Hi Kevin. I'm not good with all the names but your symptoms sound pretty much like..." + (show)
@ddotnejtleo

Hi Kevin. I'm not good with all the names but your symptoms sound pretty much like me and what you're doing. Yeah I have no answers either I even had back surgery once for it so they could help me I didn't I don't think there is anything.

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Hello @ddotnejtleo, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I'm wondering if both you and @kevinking might find some helpful information from other members in the following discussions:

-- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Have you thought about seeking a second opinion or help at a major teaching hospital or health facility like Mayo Clinic?

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