1. < Neuropathy
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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.

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toddly | @toddly | Aug 22 10:50am

First timer here. I have been diagnosed with aoxnal polyneuropathy and chronic left S1 radiculopathy. Balance is very bad, fall weekly and severe pain in my hips and glutes. Cold feet, no diabetes. Feet somewhat numb. Looking for a magic pill or remedy. I have a prescription for Gabapentin but take only one tablet at night. Don’t like how it makes my head feel and don’t know the long term side affects. Also have T-9 to S-1 fused in January 24 and redone in December 24 because a rod pulled out. Trying to lose some weight and that is helping some.

REPLY
1 reply
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Mentor
John, Volunteer Mentor | @johnbishop | Aug 22 12:37pm
In reply to @toddly "First timer here. I have been diagnosed with aoxnal polyneuropathy and chronic left S1 radiculopathy. Balance..." + (show)
Profile picture for toddly @toddly

First timer here. I have been diagnosed with aoxnal polyneuropathy and chronic left S1 radiculopathy. Balance is very bad, fall weekly and severe pain in my hips and glutes. Cold feet, no diabetes. Feet somewhat numb. Looking for a magic pill or remedy. I have a prescription for Gabapentin but take only one tablet at night. Don’t like how it makes my head feel and don’t know the long term side affects. Also have T-9 to S-1 fused in January 24 and redone in December 24 because a rod pulled out. Trying to lose some weight and that is helping some.

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Welcome @toddly, You are not alone looking for a magic pill or remedy. I think we've all been there. I have idiopathic small fiber PN but no pain, only numbness and some tingling. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. You might find this related discussion helpful for connect with other members who share your diagnosis.
-- Axonal peripheral neuropathy: Finally, a diagnosis!
https://connect.mayoclinic.org/discussion/axonal-peripheral-neuropathy-finally-a-diagnosis/
Although there are no magic pills, there are a lot of things we can do to improve our life when living with neuropathy. Here's some information on treatments from the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/treatments/.

Losing weight was one thing that definitely helped me in the beginning of my journey searching for something that helps. Have you looked into any balance exercises or therapy to help with the balance issues that are part of our neuropathy journey?

REPLY
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tammy65 | @tammy65 | Aug 23 4:42am

Hi! My name is Tammy and I suffer with Critical Illness Polineuropathy (CIP) from a complicated heart transplant. I was on life support for 4 weeks following heart valve replacement surgery during which my heart completely failed. While waiting for a heart, I had total organ failure which caused the CIP. I was in the hospital for 3 months. I was unable to walk for a year. I went through intense physical therapy and am now able to walk but with limited capability.

I want to join a group that understands the issues that affect someone with polyneuropathy on a daily basis to learn how others cope while continuing to move forward….

REPLY
2 replies
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Mentor
John, Volunteer Mentor | @johnbishop | Aug 23 7:38am
In reply to @tammy65 "Hi! My name is Tammy and I suffer with Critical Illness Polineuropathy (CIP) from a complicated..." + (show)
Profile picture for tammy65 @tammy65

Hi! My name is Tammy and I suffer with Critical Illness Polineuropathy (CIP) from a complicated heart transplant. I was on life support for 4 weeks following heart valve replacement surgery during which my heart completely failed. While waiting for a heart, I had total organ failure which caused the CIP. I was in the hospital for 3 months. I was unable to walk for a year. I went through intense physical therapy and am now able to walk but with limited capability.

I want to join a group that understands the issues that affect someone with polyneuropathy on a daily basis to learn how others cope while continuing to move forward….

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Hi Tammy @tammy65, Welcome to Connect. Here is a discussion where you can connect with other members with Critical illness polyneuropathy (CIP).
-- Know anyone else paralyzed from Critical Illness Polyneuropathy (CIP)?
https://connect.mayoclinic.org/discussion/know-anyone-else-paralyzed-from-critical-illness-polyneuropathy-cip/
If you don't mind sharing, what are the most difficult symptoms of CIP for you to manage?

REPLY
1 reply
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joshb24 | @joshb24 | Aug 23 8:14am
In reply to @johnbishop "Hello @joshb24, I would like to add my welcome to Connect along with @heisenberg34 and others...." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hello @joshb24, I would like to add my welcome to Connect along with @heisenberg34 and others. Happy to see that you have found Connect. Neuropathy can be difficult to manage and like @heisenberg34 mentioned it is definitely good to keep a positive attitude. We are our own best advocate and the more we learn about the condition, causes and possible treatments that can provide some relief the better it is for us. Two sites that have helped me learn more that might be a good reference to learn more:
-- Foundation for Peripheral Neuropathy: https://neuropathycommons.org/neuropathy/causes-neuropathy
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/causes-neuropathy

You mentioned you developed neuropathy out of nowhere this past April. Have you seen a neurologist or had any testing done for diagnosing neuropathy? Is the Cymbalta for neuropathy pain, or do you just have numbness and cold feet?

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@johnbishop hi
I was diagnosed by my primary care dr
We ruled out vascular as I had an ultrasound of both legs from the groin down and everything looked good . Thank u for the resources
My feet are more sore today than they were yesterday under the bottom of my feet . So weird
Coldness in feet is moving up my ankles and up mid calf or higher
So frustrating no method to the madness

REPLY
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joshb24 | @joshb24 | Aug 23 8:34am
In reply to @johnbishop "Hello @joshb24, I would like to add my welcome to Connect along with @heisenberg34 and others...." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hello @joshb24, I would like to add my welcome to Connect along with @heisenberg34 and others. Happy to see that you have found Connect. Neuropathy can be difficult to manage and like @heisenberg34 mentioned it is definitely good to keep a positive attitude. We are our own best advocate and the more we learn about the condition, causes and possible treatments that can provide some relief the better it is for us. Two sites that have helped me learn more that might be a good reference to learn more:
-- Foundation for Peripheral Neuropathy: https://neuropathycommons.org/neuropathy/causes-neuropathy
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/causes-neuropathy

You mentioned you developed neuropathy out of nowhere this past April. Have you seen a neurologist or had any testing done for diagnosing neuropathy? Is the Cymbalta for neuropathy pain, or do you just have numbness and cold feet?

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@johnbishop I started on Cymbalta for depression / anxiety in late 2019 . 30 mg . Dr increased after neuropathy symptoms
I see no difference

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1 reply
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joshb24 | @joshb24 | Aug 23 8:34am
In reply to @joshb24 "@johnbishop I started on Cymbalta for depression / anxiety in late 2019 . 30 mg ...." + (show)
Profile picture for joshb24 @joshb24

@johnbishop I started on Cymbalta for depression / anxiety in late 2019 . 30 mg . Dr increased after neuropathy symptoms
I see no difference

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@joshb24 in fact I would like to wean off from that drug completely

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1 reply
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tammy65 | @tammy65 | Aug 23 10:31am
In reply to @johnbishop "Hi Tammy @tammy65, Welcome to Connect. Here is a discussion where you can connect with other..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hi Tammy @tammy65, Welcome to Connect. Here is a discussion where you can connect with other members with Critical illness polyneuropathy (CIP).
-- Know anyone else paralyzed from Critical Illness Polyneuropathy (CIP)?
https://connect.mayoclinic.org/discussion/know-anyone-else-paralyzed-from-critical-illness-polyneuropathy-cip/
If you don't mind sharing, what are the most difficult symptoms of CIP for you to manage?

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@johnbishop - Hi John. The symptoms I find most difficult include the loss of capability, constant tingling, burning, numbness and coldness in my feet. I often experience muscle seizures in my left calf which is very uncomfortable.

REPLY
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Mentor
John, Volunteer Mentor | @johnbishop | Aug 23 12:31pm
In reply to @joshb24 "@joshb24 in fact I would like to wean off from that drug completely" + (show)
Profile picture for joshb24 @joshb24

@joshb24 in fact I would like to wean off from that drug completely

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@joshb24 there are discussions on tapering off of Cymbalta if you want to read what others have shared - https://connect.mayoclinic.org/search/discussions/.

REPLY
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texasblooms | @texasblooms | Aug 24 9:45am
In reply to @tammy65 "Hi! My name is Tammy and I suffer with Critical Illness Polineuropathy (CIP) from a complicated..." + (show)
Profile picture for tammy65 @tammy65

Hi! My name is Tammy and I suffer with Critical Illness Polineuropathy (CIP) from a complicated heart transplant. I was on life support for 4 weeks following heart valve replacement surgery during which my heart completely failed. While waiting for a heart, I had total organ failure which caused the CIP. I was in the hospital for 3 months. I was unable to walk for a year. I went through intense physical therapy and am now able to walk but with limited capability.

I want to join a group that understands the issues that affect someone with polyneuropathy on a daily basis to learn how others cope while continuing to move forward….

Jump to this post

@tammy65 So scary!
Polyneuropathy is a life altering disease, so unpredictable and limiting.

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