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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.

charlotte1952 | @charlotte1952 | Nov 9, 2023

Hi! I have had neuropathy for 13 years. I had oral cancer, surgery but it came back in a lymph node in my neck. I choose to do intensive chemo in hospital. I had six treatments that would last one week. Then out two weeks. Half way through I discovered that I had developed neuropathy. I was put ion Gabipen. In May I was diagnosed with ovarian cancer. I had surgery and have completed six chemo treatments. During this treatment period my neuropathy became much more painful and my Gabapentin dosage increased to 6 times a day. It helps but I am so foggy brained now. Does anyone have a suggestion on what I might do to improve my neuropathy without medication? I appreciate all suggestions. Thank you!

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1 reply
raebaby | @raebaby | Nov 9, 2023

At the same time I stopped the atenolo,I am using the Vielight 810 (left over from when my husband was alive and had Parkinson's) and the Vielight 655. I put one in each nostril. Perhaps having more feeling in my feet is from them also. I know my numbness was already there a little bit before I had chemo.
This morning I opened the curtains and a few seconds later was surprised to feel warmth under my feet. It was from the sun on my carpet. It was the smallest of things I didn't realize I was missing.

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raebaby | @raebaby | Nov 9, 2023

I forgot to mention that I take 300 mg of gabapenin 3 times a day with no problem. In fact, i feel a bit of euphoria often about 20 minutes after taking it.

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Leonard | @jakedduck1 | Nov 9, 2023

@SusanEllen66
Have you thought about getting 100 mg of Gabapentin and cutting it in half of quarters? If you start it slow enough perhaps your brain will have enough time to adjust better to the medication. Gabapentin is the weakest of the Anticonvulsants. Might be worth a try.
Jake

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2 replies
1mepnurse | @1mepnurse | Nov 9, 2023
In reply to @dbeshears1 "Yes, there are days when I need my walker or cane. Some days I’m weaker than..." + (show)
@dbeshears1

Yes, there are days when I need my walker or cane. Some days I’m weaker than others, and feel it’s safer if I want to help minimize the risk of falling. My walker is a great tool to have as I need help stepping up/down curbs or any other little steps, and I need the walker’s assistance in stores to be able to reach & stoop for items. I also don’t do well walking unassisted while carrying something, so again, my walker is a tool to be able to do that. I’ve done this now since age 52.
But I try to avoid using my walker or cane when I’m having good days and know I won’t be confronted with obstacles on my course. I don’t like how my posture has been impacted by using them, plus it’s more exertion on my upper body while leaning on them.
So yes, I use them to avoid falls and injuries, anything to be smart. My goal is to stay upright and hope to never have to be confined to a wheelchair again as much as I might be able to avoid it.

Jump to this post

I have major numbness in both feet & lower legs, but it all comes from my terrible spine. I have had multitudes of spine surgeries.
I am 100% walker dependent. I have no shooting pains with neuropathy. I am 74yr young.

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jubantique | @jubantique | Nov 10, 2023
In reply to @jakedduck1 "@SusanEllen66 Have you thought about getting 100 mg of Gabapentin and cutting it in half of..." + (show)
@jakedduck1

@SusanEllen66
Have you thought about getting 100 mg of Gabapentin and cutting it in half of quarters? If you start it slow enough perhaps your brain will have enough time to adjust better to the medication. Gabapentin is the weakest of the Anticonvulsants. Might be worth a try.
Jake

Jump to this post

I am told that on a time release medication that you should not cut the physical medication in half? Please ask your doctor what to do!
Thanks

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Leonard | @jakedduck1 | Nov 10, 2023

@jubantique
@SusanEllen66
Yes that’s true. When I took it there was no time release Gabapentin. I thought it came in immediate release.
Jake

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2 replies
lisasgroup | @lisasgroup | Nov 10, 2023
In reply to @charlotte1952 "Hi! I have had neuropathy for 13 years. I had oral cancer, surgery but it came..." + (show)
@charlotte1952

Hi! I have had neuropathy for 13 years. I had oral cancer, surgery but it came back in a lymph node in my neck. I choose to do intensive chemo in hospital. I had six treatments that would last one week. Then out two weeks. Half way through I discovered that I had developed neuropathy. I was put ion Gabipen. In May I was diagnosed with ovarian cancer. I had surgery and have completed six chemo treatments. During this treatment period my neuropathy became much more painful and my Gabapentin dosage increased to 6 times a day. It helps but I am so foggy brained now. Does anyone have a suggestion on what I might do to improve my neuropathy without medication? I appreciate all suggestions. Thank you!

Jump to this post

Have you talked to a pain psychologist? They can help many.

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1 reply
gregd1956 | @gregd1956 | Nov 10, 2023
In reply to @jakedduck1 "@jubantique @SusanEllen66 Yes that’s true. When I took it there was no time release Gabapentin. I..." + (show)
@jakedduck1

@jubantique
@SusanEllen66
Yes that’s true. When I took it there was no time release Gabapentin. I thought it came in immediate release.
Jake

Jump to this post

Is it pain meds if this gabapentin for you? It’s a big part if my TBI anti-seized several times a day. But that meds is not helping pain on my legs - agoneit… 👍

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rllh5403 | @rllh5403 | Nov 10, 2023

Yes, I have balance issues from time to time.

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