1. < Neuropathy
Profile picture for Colleen Young, Connect Director
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.

Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | Jun 4, 2023
In reply to @imagine1 "Hi, I'm Dawn. Diagnosed (after several doctor visits and tests) with peripheral polyneuropathy, which has become..." + (show)
Profile picture for DawnG @imagine1

Hi, I'm Dawn. Diagnosed (after several doctor visits and tests) with peripheral polyneuropathy, which has become much worse over the last year. Have a lot of balance issues and fall fairly frequently. Try to get exercise by going up and down shopping aisles (because I can hang on to the cart and pretend I'm walking somewhat normally), but if I do too much of that, I'm awake all night because of unrelenting pain in my legs. Does anyone else experience that? On Gabapentin, but not sure how much it helps. So glad to find this forum for support and information. What a frustrating diagnosis! The neurologist essentially said, don't know why you have it but that doesn't make much difference - there's not a lot you can do about it.

Jump to this post

Hi Dawn @imagine1, Welcome to Connect. I have to be careful with balance myself. I haven't fallen but a few times the past few years but I'm always conscious that it could happen and have become an expert in the senior shuffle, especially during the winter time. There are a couple of other discussions where members have discussed balance issues and might be helpful.
--- Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/
--- Anyone try Tai Chi to help with neuropathy and balance?: https://connect.mayoclinic.org/discussion/anyona-try-tai-chi/.

The Foundation for Peripheral Neuropathy has a lot of information that might help you learn about available treatment options and learning more about neuropathy - https://www.foundationforpn.org/living-well/.

I don't have the pain with my neuropathy but do have some numbness and tingling. It has been helpful for me to keep the skin on my legs from drying out too much by putting a hydrating lotion on every night and then putting socks on. I have used different lotions but one of my favorites is Life Flo Magnesium lotion as it seems to make my legs feel a little better.

What is your number 1 annoyance with neuropathy?

REPLY
Profile picture for DawnG
DawnG | @imagine1 | Jun 4, 2023

Thank you for the welcome, John! I'm also becoming good at the senior shuffle and can now relate in a new way to Tim Conway "old man" skits where he did that to perfection.

Those links will be very helpful - I appreciate you providing them. Number 1 annoyance is the overall clumsiness. I also have drop foot, which adds yet another challenge to walking. Ah well, could always be something worse.

REPLY
Profile picture for jeanm1
jeanm1 | @jeanm1 | Jun 4, 2023

Hello. I just joined here and am just learning how to navigate the site.
I have peripheral neuropathy with no diagnosis as to the reason for it. So I am looking for pain relief or a possible cure. I am on 1200 gr a day of Gabapenten, but it is not doing a lot for the pain, especially by the end of the day. Any suggestions?

REPLY
1 reply
Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | Jun 4, 2023
In reply to @jeanm1 "Hello. I just joined here and am just learning how to navigate the site. I have..." + (show)
Profile picture for jeanm1 @jeanm1

Hello. I just joined here and am just learning how to navigate the site.
I have peripheral neuropathy with no diagnosis as to the reason for it. So I am looking for pain relief or a possible cure. I am on 1200 gr a day of Gabapenten, but it is not doing a lot for the pain, especially by the end of the day. Any suggestions?

Jump to this post

Welcome @jeanm1, Sorry to hear the gabapentin isn't controlling the neuropathy pain. I also have idiopathic small fiber PN but only have the numbness and no pain so medication is off the list of anything that helps for me. I shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/. It's good to learn as much as you can about your condition and what treatment options are available that might provide relief. Here are my two favorite reference sites for learning:

--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
--- Neuropathy Commons: https://neuropathycommons.org/

The Foundation for Peripheral Neuropathy has a pretty comprehensive list of complementary and alternative treatments here - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf.

Have you looked into any alternative treatments?

REPLY
2 replies
Profile picture for jeanm1
jeanm1 | @jeanm1 | Jun 4, 2023
In reply to @johnbishop "Welcome @jeanm1, Sorry to hear the gabapentin isn't controlling the neuropathy pain. I also have idiopathic..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Welcome @jeanm1, Sorry to hear the gabapentin isn't controlling the neuropathy pain. I also have idiopathic small fiber PN but only have the numbness and no pain so medication is off the list of anything that helps for me. I shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/. It's good to learn as much as you can about your condition and what treatment options are available that might provide relief. Here are my two favorite reference sites for learning:

--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
--- Neuropathy Commons: https://neuropathycommons.org/

The Foundation for Peripheral Neuropathy has a pretty comprehensive list of complementary and alternative treatments here - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf.

Have you looked into any alternative treatments?

Jump to this post

Thank you for your reply. It is interesting that my sister also has neuropathy and is also not diabetic. However, she experiences numbness more than pain.
I am presently about to research if CBD oil might help.

REPLY
Profile picture for jeanm1
jeanm1 | @jeanm1 | Jun 4, 2023
In reply to @johnbishop "Welcome @jeanm1, Sorry to hear the gabapentin isn't controlling the neuropathy pain. I also have idiopathic..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Welcome @jeanm1, Sorry to hear the gabapentin isn't controlling the neuropathy pain. I also have idiopathic small fiber PN but only have the numbness and no pain so medication is off the list of anything that helps for me. I shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/. It's good to learn as much as you can about your condition and what treatment options are available that might provide relief. Here are my two favorite reference sites for learning:

--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
--- Neuropathy Commons: https://neuropathycommons.org/

The Foundation for Peripheral Neuropathy has a pretty comprehensive list of complementary and alternative treatments here - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf.

Have you looked into any alternative treatments?

Jump to this post

My neurologist has suggested I can try a different medication if I want to, but warning that every medication has it's side effects. Since I have not had any side effects from the Gabapentin, I have decided to stay on it for now. Some days are better than others, but some days leave me wondering if I should be switching to something else. I don't like taking any more medication than necessary. I do wonder if more exercise like walking, would help or aggravate
the condition?

REPLY
3 replies
Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | Jun 4, 2023
In reply to @jeanm1 "My neurologist has suggested I can try a different medication if I want to, but warning..." + (show)
Profile picture for jeanm1 @jeanm1

My neurologist has suggested I can try a different medication if I want to, but warning that every medication has it's side effects. Since I have not had any side effects from the Gabapentin, I have decided to stay on it for now. Some days are better than others, but some days leave me wondering if I should be switching to something else. I don't like taking any more medication than necessary. I do wonder if more exercise like walking, would help or aggravate
the condition?

Jump to this post

I'm no expert but I think it helps some but may depend on how strenuous or how long. I try to exercise at least 30 to 45 minutes daily although I sometimes miss a day or two. Here's some references on the topic.

--- Benefits of exercise intervention in reducing neuropathic pain: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3983517/
--- How to Exercise Safely With Neuropathy: https://www.everydayhealth.com/neuropathy/how-exercise-safely-with-neuropathy/

REPLY
1 reply
Profile picture for paktoledo
paktoledo | @paktoledo | Jun 4, 2023
In reply to @jeanm1 "My neurologist has suggested I can try a different medication if I want to, but warning..." + (show)
Profile picture for jeanm1 @jeanm1

My neurologist has suggested I can try a different medication if I want to, but warning that every medication has it's side effects. Since I have not had any side effects from the Gabapentin, I have decided to stay on it for now. Some days are better than others, but some days leave me wondering if I should be switching to something else. I don't like taking any more medication than necessary. I do wonder if more exercise like walking, would help or aggravate
the condition?

Jump to this post

Hello,
I believe exercise can/does help.
Was diagnosed with PN on April 7th, 2023.
I do water walking, water aerobics, biking, walking, and weight training.
I have found I have better circulation in my limbs!
I have recently noticed numbness in my left, upper back.
I think, if we keep moving, we can slow down the process concerning PN.
Just M.H.O. I am not a Dr. or N.P.
Hope this helps! Pat
Pat

REPLY
1 reply
Profile picture for jeanm1
jeanm1 | @jeanm1 | Jun 4, 2023
In reply to @johnbishop "I'm no expert but I think it helps some but may depend on how strenuous or..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

I'm no expert but I think it helps some but may depend on how strenuous or how long. I try to exercise at least 30 to 45 minutes daily although I sometimes miss a day or two. Here's some references on the topic.

--- Benefits of exercise intervention in reducing neuropathic pain: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3983517/
--- How to Exercise Safely With Neuropathy: https://www.everydayhealth.com/neuropathy/how-exercise-safely-with-neuropathy/

Jump to this post

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REPLY
1 reply
Profile picture for jeanm1
jeanm1 | @jeanm1 | Jun 4, 2023
In reply to @paktoledo "Hello, I believe exercise can/does help. Was diagnosed with PN on April 7th, 2023. I do..." + (show)
Profile picture for paktoledo @paktoledo

Hello,
I believe exercise can/does help.
Was diagnosed with PN on April 7th, 2023.
I do water walking, water aerobics, biking, walking, and weight training.
I have found I have better circulation in my limbs!
I have recently noticed numbness in my left, upper back.
I think, if we keep moving, we can slow down the process concerning PN.
Just M.H.O. I am not a Dr. or N.P.
Hope this helps! Pat
Pat

Jump to this post

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Sounds like a good plan but is often diffic=
ult since I live in a winter climate.  Getting out for a walk can be co=
ld and hazardous under foot!  So I have taken to stair walking, which i=
s also boring!Sent from my iPhoneOn Jun 4, 2023, at 5:42 PM, Mayo Clinic C=
onnect <

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1 reply
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