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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.

sstouten | @sstouten | Sep 24, 2017
In reply to @loisogden "I have severe peripheral neuropathy in both of my feet, that has come on very quickly..." + (show)
@loisogden

I have severe peripheral neuropathy in both of my feet, that has come on very quickly over the last 6 months and is quite painful. I'd like to know what to expect and how to deal with it. I have type 2 diabetes. I also have spinal stenosis and the doctors that I have seen don't seem to be able to determine what is causing the neuropathy. I also have osteoarthritis which complicates the whole picture. I look forward to taking part in the group as I get to know more about the whole process, for now I'm probably just going to watch and listen and see if there's anything that would apply to me.

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 I have peripheral neuropathy in my hands and feet. It was diagnosed about 12 years ago. Over time it has become very painful. I was told that it usually goes along with diabetes. But I don&apos;t have diabetes.  

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Mentor
John, Volunteer Mentor | @johnbishop | Sep 24, 2017
In reply to @loisogden "I have severe peripheral neuropathy in both of my feet, that has come on very quickly..." + (show)
@loisogden

I have severe peripheral neuropathy in both of my feet, that has come on very quickly over the last 6 months and is quite painful. I'd like to know what to expect and how to deal with it. I have type 2 diabetes. I also have spinal stenosis and the doctors that I have seen don't seem to be able to determine what is causing the neuropathy. I also have osteoarthritis which complicates the whole picture. I look forward to taking part in the group as I get to know more about the whole process, for now I'm probably just going to watch and listen and see if there's anything that would apply to me.

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Hello Lois (@loisogden), Welcome to Mayo Connect. We are happy you found us. Connect is a great place to share your health concerns, ask questions and learn what others are doing for treatments. I also have peripheral neuropathy. You can read my story here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=43#comment-65985

There is some information on diabetes induced neuropathy on Mayo Clinic's website here:
http://www.mayoclinic.org/diseases-conditions/diabetic-neuropathy/basics/causes/con-20033336
Can you share what you are doing to treat your neuropathy now? Also, have you met with a neurologist and had any tests for nerve damage (EMG)?

John

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Mentor
Jim, Volunteer Mentor | @jimhd | Sep 25, 2017
In reply to @loisogden "I have severe peripheral neuropathy in both of my feet, that has come on very quickly..." + (show)
@loisogden

I have severe peripheral neuropathy in both of my feet, that has come on very quickly over the last 6 months and is quite painful. I'd like to know what to expect and how to deal with it. I have type 2 diabetes. I also have spinal stenosis and the doctors that I have seen don't seem to be able to determine what is causing the neuropathy. I also have osteoarthritis which complicates the whole picture. I look forward to taking part in the group as I get to know more about the whole process, for now I'm probably just going to watch and listen and see if there's anything that would apply to me.

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Welcome to Connect, Lois @loisogden . I also have peripheral neuropathy in my feet, and the pain part came on quite quickly with me, as well. I'm not diabetic, so that means they don't know the cause of the neuropathy. From all I've read, it's often not possible to pinpoint an exact cause. That's true for me.

I've tried every medication for neuropathy pain that's available, and many more that are off label, and the only one that has touched the pain is morphine.

In June, I had a spinal cord stimulator implant, and I have experienced at least 80% relief from the pain. It doesn't help numbness or pins and needles. I'm an advocate now for the Burst DR spinal cord stimulator, for sure. I know it doesn't work for everyone, but I guess I'm among the fortunate ones.

Have you looked at the various discussions in the neuropathy group? You'll find a lot of conversation and useful information that I hope will be helpful.

Jim

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confused1955 | @confused1955 | Sep 25, 2017
In reply to @bookworm "I'm Birdie. I have neuropathy, primarily numbness, in my feet from a 10 year delayed diagnosis..." + (show)
@bookworm

I'm Birdie. I have neuropathy, primarily numbness, in my feet from a 10 year delayed diagnosis of pernicious anemia. When B12 is not absorbed into the body over a long period of time, nerve damage occurs, and some is not reversible. I also get shooting nerve "zaps", some quite forceful and various burning and itching in legs, hands, and feet. Other damage is the result of two meniscus surgeries, one on each knee, and moderate to severe osteoarthritis in my neck. Recently I have developed a burning mouth as well.

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Thanks Jim I've never been offered this treatment.

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loisogden | @loisogden | Sep 25, 2017
In reply to @loisogden "I have severe peripheral neuropathy in both of my feet, that has come on very quickly..." + (show)
@loisogden

I have severe peripheral neuropathy in both of my feet, that has come on very quickly over the last 6 months and is quite painful. I'd like to know what to expect and how to deal with it. I have type 2 diabetes. I also have spinal stenosis and the doctors that I have seen don't seem to be able to determine what is causing the neuropathy. I also have osteoarthritis which complicates the whole picture. I look forward to taking part in the group as I get to know more about the whole process, for now I'm probably just going to watch and listen and see if there's anything that would apply to me.

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Thank you Jim for your reply. You have shared a lot of interesting information with me, it kind of puts a new picture on it. The whole neuropathy picture is is new for me and a bit confusing with all the elements I have again not knowing what is causing it. But I'm hoping that something will be teased out in the near future with the referral to a new Dr. I'd like to look at some of the conversation that has gone on within the neuropathy group, as soon as I figure out how to find where it is.....

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Mentor
Jim, Volunteer Mentor | @jimhd | Sep 26, 2017
In reply to @loisogden "I have severe peripheral neuropathy in both of my feet, that has come on very quickly..." + (show)
@loisogden

I have severe peripheral neuropathy in both of my feet, that has come on very quickly over the last 6 months and is quite painful. I'd like to know what to expect and how to deal with it. I have type 2 diabetes. I also have spinal stenosis and the doctors that I have seen don't seem to be able to determine what is causing the neuropathy. I also have osteoarthritis which complicates the whole picture. I look forward to taking part in the group as I get to know more about the whole process, for now I'm probably just going to watch and listen and see if there's anything that would apply to me.

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Lois, if you go to your home page, you should see a place to see the list of groups. Scroll down to the Neuropathy group, click on follow, and click on discussions. @loisogden

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Mentor
Jim, Volunteer Mentor | @jimhd | Sep 26, 2017
In reply to @sevey41 "Hi I am new to this sight I live in Oregon. I am now 76 years..." + (show)
@sevey41

Hi I am new to this sight I live in Oregon. I am now 76 years young.. I have suffered with leg pain all my life they called it growing pains. I used to just periodically have leg aches but not all the time. As I have aged it's gotten worse and worse. When I turned 60 noticed new system numbness in my feet along with pain. My diagnosis is severe restless legs(take Myrapex for this) and Nuropathy caused from my back they think I do not have diabetes my circulation is good my bones strong. I deal with this daily I mostly wear tennis shoes with good support,if I wear any other type shoe even really good ones I have leg aches and terrible pain and feet. I have been to many Drs all kinds no one knows what causes the naropothy but agreed I have it. Lots of arthritis in my back they had me on strong pain pills but do not like them. Just manage by being active but pain every single day is what I live with. There is no drug or treatments acupuncture, shots, physical therapy every kind of drug including cannabus every kind of medicine but nothing helps. Wonder if anyone else has this same problem? Myrapex helps but I am OCD and the medicine makes my OCD so much worse.

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@sevey41

Boy, do I know about the shoe problem. I have enough shoes for 10 men, but I'm going through them now and getting rid of the ones that hurt my feet. I wear a pair when I have to go to town, which always means a lot of walking. That's my test. I have a lot of insoles that help cushion my feet. I've started buying shoes on the large side, to leave plenty of room for whatever insoles, or combination of insoles, work best. I keep some shoes that I know I can't walk far in, for days when I just sit in meetings or the recliner. I have one pair of slippers that have just the right amount of cushion that I put on as soon as I step in the house. I make myself only wear them indoors so they'll last longer.

Anyway, shoes become a big deal. The style now is to wear casual shoes with a suit. I haven't made that plunge yet, but I may soon.

Jim

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sstouten | @sstouten | Sep 26, 2017

I too know about wearing comfortable shoes. I probably have 200 or more shoes, but only can wear a few of them. I need to donate the others. I always enjoyed my beautiful shoes when I was working in an office or travelling. I'm retired now. My neuropathy in my feet is mainly on the tops and sides of my feet. I can walk fairly well if I have comfortable shoes on. I also have a pair of slippers that are well padded with memory foam. I put them on as soon as I get in the house. For my hands I have snug fitting gloves that I got from a medical supply store. I wear them at night when my hands are hurting. I have so many different problems that it is a challenge to take care of all of them. Most of my problems don't show so people don't think I am so ill. The only thing that shows is the disfiguring in my hands from the rheumatoid arthritis.

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2 replies
Mentor
Jim, Volunteer Mentor | @jimhd | Sep 26, 2017
In reply to @sstouten "I too know about wearing comfortable shoes. I probably have 200 or more shoes, but only..." + (show)
@sstouten

I too know about wearing comfortable shoes. I probably have 200 or more shoes, but only can wear a few of them. I need to donate the others. I always enjoyed my beautiful shoes when I was working in an office or travelling. I'm retired now. My neuropathy in my feet is mainly on the tops and sides of my feet. I can walk fairly well if I have comfortable shoes on. I also have a pair of slippers that are well padded with memory foam. I put them on as soon as I get in the house. For my hands I have snug fitting gloves that I got from a medical supply store. I wear them at night when my hands are hurting. I have so many different problems that it is a challenge to take care of all of them. Most of my problems don't show so people don't think I am so ill. The only thing that shows is the disfiguring in my hands from the rheumatoid arthritis.

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@sstouten

I wear gloves to drive. My hands ache if I don't use them. I have arthritis in my left index finger and my right thumb, and growing. So far, I can still play the piano.

Jim

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Delane Humphries | @homdee3041 | Sep 28, 2017
In reply to @sstouten "I too know about wearing comfortable shoes. I probably have 200 or more shoes, but only..." + (show)
@sstouten

I too know about wearing comfortable shoes. I probably have 200 or more shoes, but only can wear a few of them. I need to donate the others. I always enjoyed my beautiful shoes when I was working in an office or travelling. I'm retired now. My neuropathy in my feet is mainly on the tops and sides of my feet. I can walk fairly well if I have comfortable shoes on. I also have a pair of slippers that are well padded with memory foam. I put them on as soon as I get in the house. For my hands I have snug fitting gloves that I got from a medical supply store. I wear them at night when my hands are hurting. I have so many different problems that it is a challenge to take care of all of them. Most of my problems don't show so people don't think I am so ill. The only thing that shows is the disfiguring in my hands from the rheumatoid arthritis.

Jump to this post

Has anyone ever heard of NeuroGenx ?I received an article in a local paper that advertises, "Reversing Neuropathy".
It reads, Neurogenx is non-narcotic, non-surgical and non-invasive. The person is board certified foot surgeon with the Board of Podiatrics and wound management. I have not made an appt. but.... was wondering

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