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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.

donnagautreaux | @donnagautreaux | Jan 29, 2023

Thank you, Coleen! I’d like to learn more about living with neuropathy, coping skills and latest research and treatments as I enter this journey. I need to know there is hope for living a somewhat normal life!
Donna

REPLY
1 reply
kimegraves | @kimegraves | Jan 29, 2023
In reply to @donnagautreaux "Hi! My name is Donna, I am a 61 yr old personal fitness trainer who began..." + (show)
@donnagautreaux

Hi! My name is Donna, I am a 61 yr old personal fitness trainer who began having pain in my feet several months ago that progressed to burning in my feet and tingling in my calves. I t has progressed to "weird" sensations in my upper body as well as tingling on my face. I have always taken excellent care of myself. I did have a lumbar fusion in 2018 and my back pain returned last year as well as neck pain. I just figured my sensations were due to my neck and back. I had an appointment with a neurologist yesterday. He reviewed all recent MRI's of my cervical, thorasic and lumbar spine and does not think my bulging discs are causing my issues. After some physical tests he said that it is neuropathy. He did blood work and uranalysis. I will get the results next week. Of course I am full of anxiety since I have no idea what is causing this and what lies in my future. He has me on 600mg gabapentin which I began this morning. I thought it would be a good idea to join a support group as I navigate through unknown waters. Thank you! I have 2 young grandkids and another on the way as well as my youngest daughter getting married in April.....can I ever feel somewhat normal again???

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Hello Donna,
I am so sorry you are going through this! You asked "can I ever feel somewhat normal again" and my answer to that is yes you can have a normal life, but it might be different than what you currently have. What I mean is you will have to learn how to manage your pain, either with medications ( as with the gabapentin that your physician has prescribed), with dietary changes, and perhaps with changes in other aspects your life. I think the worst part for me was accepting that I now have a chronic illness, but it took awhile and during this time I read and read and read scholarly articles relating to neuropathy. Physical therapy help me improve my lower extremity muscle strength, occupational therapy assisted in helping me reestablish fine motor movement of my upper extremities and Mayo clinic Connect helped me realize I wasn't alone and many people were also living with this disease. The mentors of this group frequently provide excellent website sites with helpful information and resources. One thing I can't say enough is you must be your own advocate and keep asking questions....... You will have great support with this group. Please keep us up dated on your progress.
Kim

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pakora | @pakora | Jan 29, 2023

I have neuropathy. Announced by my family doctor He tells me nothing I am learning

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NJ Ed | @njed | Jan 30, 2023
In reply to @donnagautreaux "Hi! My name is Donna, I am a 61 yr old personal fitness trainer who began..." + (show)
@donnagautreaux

Hi! My name is Donna, I am a 61 yr old personal fitness trainer who began having pain in my feet several months ago that progressed to burning in my feet and tingling in my calves. I t has progressed to "weird" sensations in my upper body as well as tingling on my face. I have always taken excellent care of myself. I did have a lumbar fusion in 2018 and my back pain returned last year as well as neck pain. I just figured my sensations were due to my neck and back. I had an appointment with a neurologist yesterday. He reviewed all recent MRI's of my cervical, thorasic and lumbar spine and does not think my bulging discs are causing my issues. After some physical tests he said that it is neuropathy. He did blood work and uranalysis. I will get the results next week. Of course I am full of anxiety since I have no idea what is causing this and what lies in my future. He has me on 600mg gabapentin which I began this morning. I thought it would be a good idea to join a support group as I navigate through unknown waters. Thank you! I have 2 young grandkids and another on the way as well as my youngest daughter getting married in April.....can I ever feel somewhat normal again???

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Donna - Just want to follow up on what John Bishop mentioned and what struck me a while back when I first came on board with Mayo Connect is what he refers to as a new normal. That stuck in my head. I have very similar symptoms to John, numbness, poor balance and I have bi-lateral drop foot and I not only found a new normal but what I find is that I must adjust to a changing new normal. My idiopathic PN is different than it was five years ago. We still travel a lot and continue doing many of the same things that we did before my diagnosis. We just do it a little differently, but we do it. Wish you the best! Ed

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julbpat | @julbpat | Jan 30, 2023
In reply to @donnagautreaux "Thank you, Coleen! I’d like to learn more about living with neuropathy, coping skills and latest..." + (show)
@donnagautreaux

Thank you, Coleen! I’d like to learn more about living with neuropathy, coping skills and latest research and treatments as I enter this journey. I need to know there is hope for living a somewhat normal life!
Donna

Jump to this post

I would recommend that you get copies of all lab work, testing and procedures. I have 8 years worth, filed by type. It’s interesting to study them when I have a new question. For example, I was unsure about my B12 levels, and found results from a year ago, which show a normal level. I promise you any new specialist you see will be happy to see these records.

REPLY
centre | @centre | Jan 30, 2023
In reply to @donnagautreaux "Hi! My name is Donna, I am a 61 yr old personal fitness trainer who began..." + (show)
@donnagautreaux

Hi! My name is Donna, I am a 61 yr old personal fitness trainer who began having pain in my feet several months ago that progressed to burning in my feet and tingling in my calves. I t has progressed to "weird" sensations in my upper body as well as tingling on my face. I have always taken excellent care of myself. I did have a lumbar fusion in 2018 and my back pain returned last year as well as neck pain. I just figured my sensations were due to my neck and back. I had an appointment with a neurologist yesterday. He reviewed all recent MRI's of my cervical, thorasic and lumbar spine and does not think my bulging discs are causing my issues. After some physical tests he said that it is neuropathy. He did blood work and uranalysis. I will get the results next week. Of course I am full of anxiety since I have no idea what is causing this and what lies in my future. He has me on 600mg gabapentin which I began this morning. I thought it would be a good idea to join a support group as I navigate through unknown waters. Thank you! I have 2 young grandkids and another on the way as well as my youngest daughter getting married in April.....can I ever feel somewhat normal again???

Jump to this post

Hi Donna- welcome to the club 🙂 I second John’s mention of the Foundation for Peripheral Neuropathy’s website. I was started on Gabapentin for terrible nighttime pain (think woken up by a sledge-hammer crashing into your leg). I developed breathing problems on G. (respiratory issues are on the list of side effects). The website and the Mayo Clinic website have suggestions for mindful ways to control pain. Someone told me once the Lamaze method was basically self-hypnosis- I had two kids that way and it worked, so I decided to really try the mindful ways and they really work for me. One less medication off the list feels good. I’ve also been told the new Pain Management clinics lean heavily into the mindful ways too.
I too was very active and now have the weakness, pain, numbness, balance issues. No more badminton with the grandkids, but I can do Red Light, Green Light pretty great 🙂

REPLY
tony24 | @tony24 | Jan 30, 2023
In reply to @michhino "I have molded myself to ignore the PN pain, nerve lightning strikes throughout the body especially..." + (show)
@michhino

I have molded myself to ignore the PN pain, nerve lightning strikes throughout the body especially feet and not to mention, major discomfort with everyday activities. It is so difficult to hold a job and tends to be a constant search and way of life for me. Before I know it, I may wind up in the streets and/or living out of my car because of my medical situations.

And to say the least, I had to invent my own feet and shoe paddings and/or wear double cushion socks to ease pain with walking, exercise, etc.. I am 55 and figured with years of all doctors, specialist, emergency rooms, hospitals, clinics, etc.. I found that there is NO real solution and cure for PN as its been said its related to the diabetes and to only constantly maintain glucose levels and A1C. Sadly, I realize that PN will NEVER go away ultimately and prescriptions are only a waste of time and lots of money.

Most importantly, doctors, specialist, etc. will only prescribe injections and pills which are simply 'Band-Aids' to help with the discomfort of PN. As a result, I now have enormous and outstanding medical bills ever since but will have them until the day I am buried.

Finally, I am still insulin dependent to reduce glucose levels to 250-300 as I had reached before into 600s and 700s but again will NEVER be normal and enjoy everyday life.

And finally, I want to educate and encourage people please maintain your diabetes with insulin, meds, etc. , to possibly lower your glucose and A1C before your PN starts to climb upwards in your body starting with your feet.…. If not, you will definitely regret plus experience substantial and enormous pain each day.....PN is almost like a deadly cancer but with cancer, it will eventually chaufer you to the heavens but with PN, there is no chaufer and you will need to learn plus live with the diabetic symptoms and PN especially nerve pains.

Michael

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Hi I'm sorry you're going through that. you seem to have acceptance which is good. Every try accupuncture? Or how about going on you tube and typing in binarual beats for PN and listen it seems to help people. Anyways I have it all over my body form drinking too much. I'm sober but my body is messed up. I'm dealing more with limitation and weakness. Try the binaural beats on you tube. Good Vibes and Ninad music help me a little. Hang in there. Tony

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1 reply
tony24 | @tony24 | Jan 30, 2023

I was wondering if anyone has learned a way or a treatment to regain strength from nerve damage from neuropathy? When I google it, it seems pretty bleak but I still want to have some hope. Is there any supplements that could improve muscle strength? etc....

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2 replies
tony24 | @tony24 | Jan 30, 2023
In reply to @dbeshears1 "This neuropathy affects us all so differently, and some have accompanying spine issues, others like me..." + (show)
@dbeshears1

This neuropathy affects us all so differently, and some have accompanying spine issues, others like me do not. My idiopathic PN slapped me very quickly; one day my legs felt weak, then 10 days later I was in a wheelchair, with minimal hand function as well. I lived in the wheelchair for 6 months, before aggressive PT helped me build muscle strength and regain balance. I use my walker when out, but today can walk unassisted short distances and even drive. I still have bad neuropathy and take Gabapentin to help make it tolerable, but hands down, I got better from where I started, not worse, and have been at this plateau for a few years.Like many others here, what I’m trying to do is maintain strength and energy to do anything we might be able to control to maintain our current state and not get worse. Think positive, and borrow from the tips from this group to see what you might be able to do to help stop the slide!

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Hi Debbie you're story is inspiring. I hope you the best. I'm dealing with increased muscle weakness in my arms and body and It's very hard to come to terms with. I hope I can regain strength like you did some day. I have to get out my head because it's negative and super sad. I guess making myself think positive should be a daily practice. Anyways take care.

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michhino | @michhino | Jan 30, 2023
In reply to @tony24 "Hi I'm sorry you're going through that. you seem to have acceptance which is good. Every..." + (show)
@tony24

Hi I'm sorry you're going through that. you seem to have acceptance which is good. Every try accupuncture? Or how about going on you tube and typing in binarual beats for PN and listen it seems to help people. Anyways I have it all over my body form drinking too much. I'm sober but my body is messed up. I'm dealing more with limitation and weakness. Try the binaural beats on you tube. Good Vibes and Ninad music help me a little. Hang in there. Tony

Jump to this post

Thank you, Tony.

I have tried many types of medications prescribed by doctors. They do not seem to work and I do not know why I take them. I also bought massagers for hands, legs and feet to ease the pain a bit. This is the closes cure that I have for a little comfort when at home but for others I suffer as usual.

I will research binaural beats and I do have doubts for an ultimate cure.

Again, thank you.

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