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.

peachambeauty | @peachambeauty | Aug 29, 2023
In reply to @johnbishop "Hello Sally (@sallymagint), welcome to Mayo Connect, we are so glad you found us. This is..." + (show)
@johnbishop

Hello Sally (@sallymagint), welcome to Mayo Connect, we are so glad you found us. This is a great place to ask questions, share your story and learn about others with similar health issues and possible treatments. Neuropathy can be difficult to comprehend sometimes due to number of different types, diagnosis and possible treatments. It's pretty awesome you have found some experienced specialists that are helping you. That is a big step.

Do you have a diagnosis you can share?

Mine is idiopathic small fiber peripheral neuropathy plus a few more issues. I have to share a story about the idiopathic diagnosis. I was at a Minnesota Neuropathy Association that had 3 different speakers. There was a short questions and answers session after each speaker. The first two speakers were asked the same question - how many people around the world are affected by peripheral neuropathy? The first speaker said the number was around 20 million or so. The second speaker said including China about 80 million had some form of neuropathy. The third speaker, an 80+ year old neurologist who still had a small practice and is doing research at the University of Minnesota to develop a inexpensive test to determine if you have peripheral neuropathy, said "in deference to my younger colleagues, idiopathic was named after the idiot neurologist who did the diagnosis. If you live long enough everyone gets neuropathy because the nerves will eventually start dying off". He drew the biggest laugh from the crowd.

Hoping for some answers for you.

John

Jump to this post

I finally was diagnosed at the age of 81 after several years of suffering with pain in my feet and balance problems. Some days are worse than others. My diagnosis was Idiopathic length dependent axonal sensorimotor polyneuropathy. My life has changed radically, but thanks to a supportive loving husband I can still find joy in my life. My neurologist has me on 900 mg of Gabapentin daily. Also I wear compression socks. I thought the Gabapentin wasn't helping me so I stopped it for one week, and then realized my symptoms were worse. I have accepted my condition and just will have to adjust to my limitations. Happy I have found this website.
REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Aug 29, 2023
In reply to @peachambeauty "I finally was diagnosed at the age of 81 after several years of suffering with pain..." + (show)
@peachambeauty

I finally was diagnosed at the age of 81 after several years of suffering with pain in my feet and balance problems. Some days are worse than others. My diagnosis was Idiopathic length dependent axonal sensorimotor polyneuropathy. My life has changed radically, but thanks to a supportive loving husband I can still find joy in my life. My neurologist has me on 900 mg of Gabapentin daily. Also I wear compression socks. I thought the Gabapentin wasn't helping me so I stopped it for one week, and then realized my symptoms were worse. I have accepted my condition and just will have to adjust to my limitations. Happy I have found this website.

Jump to this post

Hi @peachambeauty, Welcome to Connect. Neuropathy does change our lives. Like you mentioned, maintaining a supportive loving husband and family definitely helps fill in the blanks and helps us get through the day. There are a lot of discussions in the Neuropathy Support Group if you are looking for specific topics. Here is Neuropathy Support Group page that lists the discussions - https://connect.mayoclinic.org/group/neuropathy/.

I think one thing that really helped me when I was first diagnosed was learning as much as I could about my condition and options available to provide relief. Here are a couple of sites if you haven't already seen them:
--- Foundation for Peripheral Neuropathy - Living Well: https://www.foundationforpn.org/living-well/
--- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview.

Do you have any questions you are trying to get answered?

REPLY
Ray Kemble | @ray666 | Aug 29, 2023
In reply to @ronoejello1 "It’s not with ease it pains me. It is with determination. I started with a few..." + (show)
@ronoejello1

It’s not with ease it pains me.
It is with determination.
I started with a few hundred and have very slowly progressed. It sucks but I do it
I am writing a book outlining my progress
“Small Steps and a Few Dreams”
I hope for you🙏best wishes and some relief!!!
Regards,
Ron

Jump to this post

All the best with your book, Ron! It should prove an inspirational story and first-person, inspirational stories will always be welcome indeed. ––Ray

REPLY
1 reply
Ray Kemble | @ray666 | Aug 29, 2023
In reply to @peachambeauty "I finally was diagnosed at the age of 81 after several years of suffering with pain..." + (show)
@peachambeauty

I finally was diagnosed at the age of 81 after several years of suffering with pain in my feet and balance problems. Some days are worse than others. My diagnosis was Idiopathic length dependent axonal sensorimotor polyneuropathy. My life has changed radically, but thanks to a supportive loving husband I can still find joy in my life. My neurologist has me on 900 mg of Gabapentin daily. Also I wear compression socks. I thought the Gabapentin wasn't helping me so I stopped it for one week, and then realized my symptoms were worse. I have accepted my condition and just will have to adjust to my limitations. Happy I have found this website.

Jump to this post

Hi, Sally!

And welcome! Yes, adjusting to limitations can prove quite the challenge. It has for me. Not a day goes by that I don't say to my partner, "I wish I could help you with that … "Fortunately, she's totally understanding, as you say your husband is, too. Life continues to have its rewards.

Best wishes to you!
Ray

REPLY
Ray Kemble | @ray666 | Aug 29, 2023
In reply to @florentina99 "Hi Ray and thank you for your kind reply... I have read lots of online stuff..." + (show)
@florentina99

Hi Ray and thank you for your kind reply...
I have read lots of online stuff about different neuropathic pain , mine fits the autonomic type as my digestion is very poor.
I am still thinking some of this is a symptom of a circulation issue though.All my heart tests are OK and so was a recent chest xray however my hands and feet are always very cold,I'm lightheaded alot and have really bad pain after even eating a piece of toast.! My weight is stable but only because I eat tiny meals often and am no longer able to exercise. Conns disease complications are usually cardiovascular because of the damage caused by hypertension, and boy my BP was high! I don't feel I've had the appropriate scans to look at this though.My Gp doesn't agree though and neither does my gi Dr. I would have this scan done privately, however I need a Dr to refer me( angiogram) and he won't.... The frustration is enormous!!!! Thank you for reading this.....

Jump to this post

Hello, again, Tina

Thank you for replying. Unfortunately, I'm running out the door and will be gone for the rest of the day, but I did want to say, if briefly, I hope you'll continue to post. That's one of Connect's virtues––perhaps its No. 1 virtue––how we all learn from each other.

My best wishes to you!
Ray

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Aug 29, 2023
In reply to @jrzees1942 "Thank you for letting me in." + (show)
@jrzees1942

Thank you for letting me in.

Jump to this post

Welcome @jrzees1942, Beautiful rainbow photo! Do you mind sharing what brought you to Connect?

REPLY
1 reply
jrzees1942 | @jrzees1942 | Aug 29, 2023
In reply to @johnbishop "Welcome @jrzees1942, Beautiful rainbow photo! Do you mind sharing what brought you to Connect?" + (show)
@johnbishop

Welcome @jrzees1942, Beautiful rainbow photo! Do you mind sharing what brought you to Connect?

Jump to this post

I have had DPN since 2006 and now I have to use a walker to get around.
In pain all the time. Have been taking Lyrica all this time, also use a Vpod unit before bed time.
Hoping to get some input about this disease.

REPLY
wood | @wood | Aug 29, 2023

I have idiopathic neurnopathy and have increasing difficulty with balance and walking

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 29, 2023
In reply to @wood "I have idiopathic neurnopathy and have increasing difficulty with balance and walking" + (show)
@wood

I have idiopathic neurnopathy and have increasing difficulty with balance and walking

Jump to this post

Welcome @wood, You are not alone. There are many of us that have increasing difficulty with balance and walking. The Foundation for Peripheral Neuropathy has a lot of great information that you might find helpful here - https://www.foundationforpn.org/living-well/.

Have you looked into any physical therapy or exercise to help with the balance problems?

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.