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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.

centre | @centre | Sep 26, 2021
In reply to @johnbishop "Hello @centre, Welcome to Connect. The changes we sometimes have to make to compensate for our..." + (show)
@johnbishop

Hello @centre, Welcome to Connect. The changes we sometimes have to make to compensate for our neuropathy symptoms and other health conditions can be difficult to say the least. It is great that you have been successful in managing your neuropathy pain without medication. The technique you describe sounds much like neuroplasticity. I'm wondering if you might also find the following discussions helpful.

-- Neuropathy and Brain Neuroplasticity: https://connect.mayoclinic.org/discussion/barry-sheales-australia/
-- Amazing website/App in Dealing with Chronic Pain; curablehealth.com: https://connect.mayoclinic.org/discussion/amazing-websiteapp-in-dealing-with-chronic-pain-curablehealth-com/
-- Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/

Have you tried any exercises or physical therapy to help with your balance?

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Thank-you for the resources, I’ll check them out. PT has added balance exercises to my Home Program and I do all of them faithfully, I have seen improvement (walker to cane to independent but careful). One PT explained to me to remember that the pain message is “false”, there really isn’t a sledge hammer crashing into my leg, that the brain receives the pain signal as an explosive blast, which is not differentiated/localized. Quickly using visualization, for me, quickly short-circuits the pain message. #1- (works best), I think I learned this on the Mayo site, you imagine cutting off your leg above the pain point, taking it over and putting it inside the closet, and firmly shutting the door. #2 I imagine myself in a rowboat, with an angry tornado-like storm nearby and I gently, gently row away.
I found Gabapentin affected my breathing (see side effects), so I had to get off it somehow.
Thank-you for being a mentor, and for your suggestions.

REPLY
mcd123 | @mcd123 | Sep 26, 2021
In reply to @johnbishop "Hi @mcd123, I'm wondering if you might find the following discussion helpful - Mayo Pain Rehabilitation..." + (show)
@johnbishop

Hi @mcd123, I'm wondering if you might find the following discussion helpful - Mayo Pain Rehabilitation Program where @rwinney has shared this video from Dr. Sletten, Mayo Clinic Pain Rehabilitation Center describing Central Sensitization - https://connect.mayoclinic.org/comment/595133/

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The video was helpful. I would like to participate in the program but I understand it cost 40,000 plus staying in a hotel for three weeks. I am retired don't have that kind of cash. Than you John for your reply to me tonight.

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alawildman | @alawildman | Sep 27, 2021
In reply to @windsorchris "I was very concerned about gabapentin side effects but to date, no side effects at 900mg..." + (show)
@windsorchris

I was very concerned about gabapentin side effects but to date, no side effects at 900mg a day and adding 100mg every week to 3600mg daily. I believe it is helping reduce the tingling of my feet and lower legs. unfortunately, the PN progresses but with less discomfort I am told. Following WinSanTor trials for pirenzepine touted as a potential reversal of PN as the nerves regrow or so described. Good luck my friend.

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What Dr would let you take 3600 MGS of gabrapentin that concerns me ?

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3 replies
korgman123 | @korgman123 | Sep 27, 2021
In reply to @johnbishop "Thank you Colleen and Mayo Connect! @jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10..." + (show)
@johnbishop

Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

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Glad to join up, thank you. Noticed a bit of numbing under the toe pads, fingers too , beginning a few months ago. Now the doctor has me on Metanx the last month. Not sure it's helping yet. It seems to be progressing a bit....ugh.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 27, 2021
In reply to @korgman123 "Glad to join up, thank you. Noticed a bit of numbing under the toe pads, fingers..." + (show)
@korgman123

Glad to join up, thank you. Noticed a bit of numbing under the toe pads, fingers too , beginning a few months ago. Now the doctor has me on Metanx the last month. Not sure it's helping yet. It seems to be progressing a bit....ugh.

Jump to this post

Hello @korgman123, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. You mentioned that you have a little bit of numbing in your toes and fingers starting a few months ago and the doctor started you on Metanx (vitamin B supplement). Here is some more information on Metanx in case you want to find out more -- Metanx Review – 8 Things You Should Consider: https://www.brainreference.com/metanx-review/

Did your doctor run any nerve conduction tests or other test and provide a diagnosis of neuropathy?

REPLY
1 reply
korgman123 | @korgman123 | Sep 27, 2021
In reply to @johnbishop "Hello @korgman123, Welcome to Connect, an online community where patients and caregivers share their experiences, find..." + (show)
@johnbishop

Hello @korgman123, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. You mentioned that you have a little bit of numbing in your toes and fingers starting a few months ago and the doctor started you on Metanx (vitamin B supplement). Here is some more information on Metanx in case you want to find out more -- Metanx Review – 8 Things You Should Consider: https://www.brainreference.com/metanx-review/

Did your doctor run any nerve conduction tests or other test and provide a diagnosis of neuropathy?

Jump to this post

Hello John, my doctor basically examined, no special testing

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Sep 27, 2021
In reply to @korgman123 "He says it's neuropathy." + (show)
@korgman123

He says it's neuropathy.

Jump to this post

Thanks, If it were me, I might be asking him why does he think it's neuropathy. Symptoms can probably be from many things. Here's some more information that might be helpful for you if you need to ask more questions if it doesn't get any better - https://neuropathycommons.org/neuropathy/tests-diagnosing-small-fiber-polyneuropathy

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2 replies
retired123 | @retired123 | Sep 27, 2021

Hello ~ Anyone have any tried and true treatment for swollen feet and ankles due to neuropathy? Small fiber neuropathy to be more specific. No pain, only swelling. Thank you.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 27, 2021
In reply to @retired123 "Hello ~ Anyone have any tried and true treatment for swollen feet and ankles due to..." + (show)
@retired123

Hello ~ Anyone have any tried and true treatment for swollen feet and ankles due to neuropathy? Small fiber neuropathy to be more specific. No pain, only swelling. Thank you.

Jump to this post

@retired123 I also have lymphedema and my legs and feet swell up a little during the day and I wear compression socks that help. Have you ever been tested for edema or swelling in your feet? Is it just the feet or do the legs also show swelling.

Here's some information that may give you a few things to try if you haven't already seen them.
-- Swollen Feet and Ankles: Treatments to Try: https://health.clevelandclinic.org/6-best-ways-relieve-swollen-feet-ankles-home/

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