1. < Neuropathy
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.

alfer | @alfer | Nov 26, 2022
In reply to @johnbishop "Hi @alfer, Are you logged in now? If you are, you just need to click on..." + (show)
@johnbishop

Hi @alfer, Are you logged in now? If you are, you just need to click on your member name to go to your profile. Once on your profile screen, click the Settings tab below your profile description, then click the Edit link to the right of Change Password. See the attached screen.

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Thanks got it!

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Mentor
John, Volunteer Mentor | @johnbishop | Nov 26, 2022
In reply to @eep "I have extreme neuropathy. I can't balance, on my feet, the pain goes up my legs..." + (show)
@eep

I have extreme neuropathy. I can't balance, on my feet, the pain goes up my legs to my knees. My legs feel like logs. They are cold in the morning. I get shooting electric pains shooting into my legs. These pains have been getting stronger, and now I get them on the bottom of my toes. My hands are numb most of the time, and I can't pick up things, and I drop things all the time. My colon feels like it's clogged. I used to have small pencil size, bowl movements. now they are more like mush. I feel like my colon is clogged. I don't know what to do. My doctor told me when I was diagnosed that there was no cure for me. I have felt like I've been dying for the last few years. I refuse to go back to him, he was a jerk. I am currently away from home for the next 5 months. Last year I fell and broke my femur, had surgery, and fell again, and broke the same femur in a different place. The surgeries have made my neuropathy spread quickly. I'm afraid to have any surgery.

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Welcome @eep, I'm sorry to hear you are struggling with your neuropathy symptoms. I know it must be extremely difficult to deal with. I wonder if you might find some treatment ideas that you haven't seen before on the Foundation for Peripheral Neuropathy's website here:
-- https://www.foundationforpn.org/treatments/

Have you looked into any exercises or therapy to help with your balance?

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1 reply
marianmabryharris | @marianmabryharris | Nov 30, 2022
In reply to @jakedduck1 "@avmcbellar Okay, if do you want to help with any questions I got one for you...." + (show)
@jakedduck1

@avmcbellar
Okay, if do you want to help with any questions I got one for you.
I read this but I’m not sure if it’s true. It said when you’re neuropathy changes from all or most of the painful symptoms go away and you get more numbness your Neuropathy is getting worse.
What do you think?
Ever hear the before? Are used to have all the horrendously painful symptoms but they went away and now The numbness has gone all the way up to just passed my waist. I can’t feel my feet at all and keep trying to takeoff my shoes and socks which you’re already off but I can’t tell my lower legs are pretty bad too and the numbness eases the farther up it goes, at least for now.
Any ideas,
Jake

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Hi Jake, I am new to the group and still trying to find my way around. Overnight, literally I got out of bed and the pain in my foot was horrible and never stopped for one month. My daughters wedding a month later and then I woke u, and within 10 days the numbness move all the way up from my calves, thighs, privates, belly and then the lips. Every am it was moving.

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1 reply
wmarkham | @wmarkham | Nov 30, 2022

Has anyone had positive experience with new shingles shot and peripheral neuropathy

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Nov 30, 2022
In reply to @wmarkham "Has anyone had positive experience with new shingles shot and peripheral neuropathy" + (show)
@wmarkham

Has anyone had positive experience with new shingles shot and peripheral neuropathy

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Welcome @wmarkham, I have had peripheral neuropathy for 20+ years, no pain, just the numbness and some tingling. I had the new Shingrix shot earlier this year along with the first COVID booster and the only side effects were the normal sore arm and a little fatigue.

Have you had the Shingrix vaccine along with other side effects?

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Leonard | @jakedduck1 | Nov 30, 2022
In reply to @marianmabryharris "Hi Jake, I am new to the group and still trying to find my way around...." + (show)
@marianmabryharris

Hi Jake, I am new to the group and still trying to find my way around. Overnight, literally I got out of bed and the pain in my foot was horrible and never stopped for one month. My daughters wedding a month later and then I woke u, and within 10 days the numbness move all the way up from my calves, thighs, privates, belly and then the lips. Every am it was moving.

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@marianmabryharris
I never heard of such rapid advancement. I wish I could help but I don't have a clue.
Mine went from my feet to just above my waist but it took years.
Now the pains are gone. Numbness took over but again, it took years. Actually decades.
Are you tried taking anything any medication or other treatments?
Best of luck,
Jake

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Debbie | @dbeshears1 | Dec 1, 2022
In reply to @wmarkham "Has anyone had positive experience with new shingles shot and peripheral neuropathy" + (show)
@wmarkham

Has anyone had positive experience with new shingles shot and peripheral neuropathy

Jump to this post

I had PN for 5 years before getting my 1st Shingrex vaccine in early 2021. Because I opted to get my first two Covid vaccines scheduled after that, my 2nd Shingrex shot was 6 months after the 1st, but within the 2-6 months apart guidance from the CDC. Anyway, all 4 shots caused arm pain as normal, but I will say the 2nd Shingrex vaccine added more body pain, fatigue, and frustration for almost a week. However, it didn’t compare to having actual shingles 8 months earlier, so it was a breeze by comparison. I saw no change in my PN after any of those 2021 vaccines; my PN fluctuates day-to-day between tough or great days, and I saw no change in that. That was my experience anyway, if you choose to get them, I wish you the best!

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roslyn | @roslyn | Dec 2, 2022

My husband has PN and I ,as his wife, am supportive. He’s tried a lot of treatments- sanexas machine, injections, acupuncture, physical therapy. Only physical therapy helps. He
has tingling in his feet and weakness in his legs that make it hard to walk. Any suggestions of
What else to do?

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Dec 2, 2022
In reply to @roslyn "My husband has PN and I ,as his wife, am supportive. He’s tried a lot of..." + (show)
@roslyn

My husband has PN and I ,as his wife, am supportive. He’s tried a lot of treatments- sanexas machine, injections, acupuncture, physical therapy. Only physical therapy helps. He
has tingling in his feet and weakness in his legs that make it hard to walk. Any suggestions of
What else to do?

Jump to this post

What's helped me walk (when the weather is nice!) is a set of lightweight trekking poles. They also help with my balance issues when walking.

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2 replies
fala | @fala | Dec 2, 2022
In reply to @eep "I have extreme neuropathy. I can't balance, on my feet, the pain goes up my legs..." + (show)
@eep

I have extreme neuropathy. I can't balance, on my feet, the pain goes up my legs to my knees. My legs feel like logs. They are cold in the morning. I get shooting electric pains shooting into my legs. These pains have been getting stronger, and now I get them on the bottom of my toes. My hands are numb most of the time, and I can't pick up things, and I drop things all the time. My colon feels like it's clogged. I used to have small pencil size, bowl movements. now they are more like mush. I feel like my colon is clogged. I don't know what to do. My doctor told me when I was diagnosed that there was no cure for me. I have felt like I've been dying for the last few years. I refuse to go back to him, he was a jerk. I am currently away from home for the next 5 months. Last year I fell and broke my femur, had surgery, and fell again, and broke the same femur in a different place. The surgeries have made my neuropathy spread quickly. I'm afraid to have any surgery.

Jump to this post

Hi, I just want to address one thing. Every time I had to change medications or diet for high Blood Pressure my constipation would show its ugliness. My daughter who is in the Medical Field, turned me on to Colon Max. I have only found it online, but it is a natural product that REALLY works. The amount, either one or two capsules can solve that bowel problem.
Good Luck!!

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