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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.

korgman123 | @korgman123 | Sep 29, 2021

I'll check it out John, Thanks

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bunting | @bunting | Sep 29, 2021

After a very bad case of shingles six and a half yrs. ago, I was left with PHN in the nerve extending from L4 around my right side (under my armpit and beneath/and into my right breast). I am now 74. I had given up on finding any useful info about treatment, etc., a couple of years ago. Fortunately I have a Pain Management doctor whom I feel is trying his best to help me, having used all of the typical treatments discussed by those in this group. I am on the referral list to see a highly respected neurologist in San Antonio, TX, where I go for treatment. I may not have many comments to add, but I will definitely be following what is happening with the Mayo discussions.

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1 reply
wolfgang | @wolfgang | Sep 30, 2021

Hello Colleen, hello group,
I'm 59y old, from Vienna/Austria and I have been diagnosed with CIDP (not sure whether I'm in the right group with that?).
It all started with a minor shoulder surgery (supraspinatus) in April 2014 where - in addition to a general anesthesia - they applied a scalenus block. Four weeks later, suddenly the pain in my left arm started and a few days later I couldn't move my thumb and index finger of my left hand any longer. They diagnosed some kind Neuropathy of the Medianus in my left arm at that time.
I have been treated with both cortison and immunoglobolin and It got better. But later on I had also pain in my right arm/hand and in my toes. A lot of diagnosis has been done and just a year ago I was diagnosed CIDP. I'm now getting iv-IGVena every four weeks (since about a year or so) and taking a low dose of Lyrica (150mg pd). With this treatment I've presently very little pain, can live very well, but a the same time it doesn't really disappear. My left thumb and index fingers are still numb.
Can anyone share some experience with CIDP or similar symptoms?
BR Wolfgang

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 30, 2021
In reply to @bunting "After a very bad case of shingles six and a half yrs. ago, I was left..." + (show)
@bunting

After a very bad case of shingles six and a half yrs. ago, I was left with PHN in the nerve extending from L4 around my right side (under my armpit and beneath/and into my right breast). I am now 74. I had given up on finding any useful info about treatment, etc., a couple of years ago. Fortunately I have a Pain Management doctor whom I feel is trying his best to help me, having used all of the typical treatments discussed by those in this group. I am on the referral list to see a highly respected neurologist in San Antonio, TX, where I go for treatment. I may not have many comments to add, but I will definitely be following what is happening with the Mayo discussions.

Jump to this post

Hello @bunting, Welcome to Connect. I think it is really good that you are being proactive and looking for options to help with your pain and you have a Pain Management doctor working with you trying to help. I hope you are able to provide an update after you see the neurologist in San Antonio. From your post it sounds similar to the pain from sciatica which is described in an article here --- All About the L4-L5 Spinal Segment: https://www.spine-health.com/conditions/spine-anatomy/all-about-l4-l5-spinal-segment

I think you might find the following discussions helpful also:
-- Sciatica: https://connect.mayoclinic.org/discussion/sciatica-3/
-- Sciatic nerve pain: https://connect.mayoclinic.org/discussion/sciatic-nerve-pain/
-- Sciatica pain: https://connect.mayoclinic.org/discussion/sciatica-pain/
-- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Can you let us know how your appointment goes with the neurologist?

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 30, 2021
In reply to @wolfgang "Hello Colleen, hello group, I'm 59y old, from Vienna/Austria and I have been diagnosed with CIDP..." + (show)
@wolfgang

Hello Colleen, hello group,
I'm 59y old, from Vienna/Austria and I have been diagnosed with CIDP (not sure whether I'm in the right group with that?).
It all started with a minor shoulder surgery (supraspinatus) in April 2014 where - in addition to a general anesthesia - they applied a scalenus block. Four weeks later, suddenly the pain in my left arm started and a few days later I couldn't move my thumb and index finger of my left hand any longer. They diagnosed some kind Neuropathy of the Medianus in my left arm at that time.
I have been treated with both cortison and immunoglobolin and It got better. But later on I had also pain in my right arm/hand and in my toes. A lot of diagnosis has been done and just a year ago I was diagnosed CIDP. I'm now getting iv-IGVena every four weeks (since about a year or so) and taking a low dose of Lyrica (150mg pd). With this treatment I've presently very little pain, can live very well, but a the same time it doesn't really disappear. My left thumb and index fingers are still numb.
Can anyone share some experience with CIDP or similar symptoms?
BR Wolfgang

Jump to this post

Hello @wolfgang, Welcome to Connect. It's good to hear you are searching for answers and learning as much as you can about your diagnosis. There is another discussion where you can meet other members discussing CIDP.

CIDP (Chronic Inflammatory Demyelinating Polyneuropathy): https://connect.mayoclinic.org/discussion/cidp-chronic-inflammatory-demylinating-polyneuropathy/

Here's some information you might find helpful from the GBS/CIDP Foundation International. There is a video that discusses sorting out your diagnosis and treatment of CIDP -- https://www.gbs-cidp.org/cidp/all-about-cidp/

Do you mind sharing how you found Connect?

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libbye | @libbye | Sep 30, 2021
In reply to @johnbishop "Hello @libbye, Welcome to Connect, an online community where patients and caregivers share their experiences, find..." + (show)
@johnbishop

Hello @libbye, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I know it must also be difficult for you to know your husband is in so much pain and not know how to help him. Has your husband tried something like a donut pillow with a hole in the center (orthopedic donut cushion) to see if that helps with pain when sitting?

Jump to this post

The donut pillow really doesn't work. It is the hip area that is so painful.

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wolfgang | @wolfgang | Oct 1, 2021

Thanks John for the welcome and the tips; I found out about connect over the internet searching for CIDP and neuropathy sources...

REPLY
mcd123 | @mcd123 | Oct 1, 2021
In reply to @johnbishop "Hello @bunting, Welcome to Connect. I think it is really good that you are being proactive..." + (show)
@johnbishop

Hello @bunting, Welcome to Connect. I think it is really good that you are being proactive and looking for options to help with your pain and you have a Pain Management doctor working with you trying to help. I hope you are able to provide an update after you see the neurologist in San Antonio. From your post it sounds similar to the pain from sciatica which is described in an article here --- All About the L4-L5 Spinal Segment: https://www.spine-health.com/conditions/spine-anatomy/all-about-l4-l5-spinal-segment

I think you might find the following discussions helpful also:
-- Sciatica: https://connect.mayoclinic.org/discussion/sciatica-3/
-- Sciatic nerve pain: https://connect.mayoclinic.org/discussion/sciatic-nerve-pain/
-- Sciatica pain: https://connect.mayoclinic.org/discussion/sciatica-pain/
-- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Can you let us know how your appointment goes with the neurologist?

Jump to this post

John, I recently saw information in a device called Sprint Endura which according to my reading is supposedly great for neuropathy pain. I was wondering if anyone else had tried this and the outcomes. Not sure where to post this question. Thanks. Cathy

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 1, 2021
In reply to @mcd123 "John, I recently saw information in a device called Sprint Endura which according to my reading..." + (show)
@mcd123

John, I recently saw information in a device called Sprint Endura which according to my reading is supposedly great for neuropathy pain. I was wondering if anyone else had tried this and the outcomes. Not sure where to post this question. Thanks. Cathy

Jump to this post

Hi Cathy @mcd123, There is another discussion on the device where you can learn what members have shared about it. I also responded to you in the following discussion so that you will get an email notification and can go directly to the discussion.

SPR Peripheral Nerve Stimulator (SPRINT): https://connect.mayoclinic.org/discussion/spr-peripheral-nerve-stimulator-sprint/

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suzirtist | @suzirtist | Oct 2, 2021

I would like to get feedback on dealing with nondiabetic neuropathy. It is ruling my life. ☹

REPLY
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