Living with Neuropathy - Welcome to the group

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.

Just want to thank you all for sharing your experiences. I am kind of new to PN. It became a serious concern the last 2 years. I did not connect my PN with my balance problems, but reading your experiences and suggestions is extremely helpful.

REPLY
@fb4

Just want to thank you all for sharing your experiences. I am kind of new to PN. It became a serious concern the last 2 years. I did not connect my PN with my balance problems, but reading your experiences and suggestions is extremely helpful.

Jump to this post

Welcome @fb4, I think most of us dealing with neuropathy have some balance issues. Have you tried any exercises or physical therapy to see if it might help?

REPLY
@johnbishop

Hi @johnnieray47, Welcome to Connect. Sorry to hear you are dealing with peripheral neuropathy. PN is what brought me to Connect back in 2016. I shared my neuropathy journey along with other members in another discussion here - https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/.

I know it's not much comfort but you are not alone. I think most of us suffering with the different neuropathy symptoms came to Connect hoping to find the magic bullet that cures neuropathy when one doesn't exist. What we can do together is share our experiences and learn from each other what we have found that has provided us with some type of relief. The best thing we can do is be our own best advocate by learning as much as we can about our condition and what treatments may provide a form of relief. A great place to learn more about neuropathy is the Foundation for Peripheral Neuropathy website - https://www.foundationforpn.org/living-well/.

Have you done any research on alternative or complementary treatments for neuropathy? What symptoms bother you the most if you don't mind me asking?

Jump to this post

@johnbishop , I have tried acupuncture, mama bear, several different internet pills, Gabapentin, etc. The best relief so far has been copper fit compression sleeves for plantar fascia.
Worst problem is numbness on balls of feet and swollen feeling.

REPLY
@johnnieray47

Hi, my name is johnnie ray and I have had peripheral neuropathy for about three years. My VA doc and Medicare doc both tell me nothing will help. All they offer is gabapentin or Lyrica .

Jump to this post

I have recently gotten neuropathy from a recent minimally evasive surgery done in October. Just had a new MRI and I will be discussing why I have this symptom now. Will keep you posted on his answer. I know physical therapy and exercises on line that suppose to help. Pain meds also help but you can only get them from a pain specialist doctor. I take Norco.

REPLY
@johnbishop

Welcome @fb4, I think most of us dealing with neuropathy have some balance issues. Have you tried any exercises or physical therapy to see if it might help?

Jump to this post

Yes, I am exercising with a goal of improving my balance. I do find some positive results, and I hope by continuing, it improves my sense of stability.
Thank you.

REPLY
@ray666

Hi, Barb

Fetching that morning newspaper is Ray's First Great Adventure of thr the Day.
Our front door has an unusually muscular pneumatic tube that, as you attempt to step out, tries its damnedest to push you back indoors. (We've tried adjusting the tube. No luck.) After that, there's the garden walk. Once you reach the end of the walk, the next giggle is finding where the morning paper, pitched from the passing delivery van, has landed: findable? reachable? beyond the curb? on the roof of my Jeep? unfindable? (always a possibility). All the while, my eyes are darting right and left, knowing that if I'm not vigilant I'm sure to be mowed down by a 80 mph skakeboarder.

Cheers!
Ray (@ray666)

Jump to this post

Hi Ray (@ray666) --
My front door has the same unusually muscular pneumatic tube as yours, white in color (as if that matters). My youngest son, frustrated with the bother of trying to adjust it one day when he was over, just removed the tube altogether. It isn't the most attractive fix, but it sure solved the problem! Now I just need to be extra vigilant on real windy days that the door doesn't blow itself off the hinges as I open it to retrieve the mail - lol.
Enjoy the week!
Barb

REPLY
@bjk3

Hi Ray (@ray666) --
My front door has the same unusually muscular pneumatic tube as yours, white in color (as if that matters). My youngest son, frustrated with the bother of trying to adjust it one day when he was over, just removed the tube altogether. It isn't the most attractive fix, but it sure solved the problem! Now I just need to be extra vigilant on real windy days that the door doesn't blow itself off the hinges as I open it to retrieve the mail - lol.
Enjoy the week!
Barb

Jump to this post

Hi, Barb (@bjk3)

There's a message in these pneumatic tubes for those of us balance issues, isn't there? We don't need to be pushed or pulled one way or t'other, not without our willing it. We've one direction in mind, one path to get us safely – one cautious step at a time – from here to there.

I'm reminded of what his physical therapist told Michael J. Fox: "Stop thinking about where you're going. Think only about where you're going to put your foot when you take your next step." (That's me paraphrasing Fox's PT.)

Merry Wednesday, Barb!
Ray (@ray666)

REPLY
@ray666

Hi, Barb (@bjk3)

There's a message in these pneumatic tubes for those of us balance issues, isn't there? We don't need to be pushed or pulled one way or t'other, not without our willing it. We've one direction in mind, one path to get us safely – one cautious step at a time – from here to there.

I'm reminded of what his physical therapist told Michael J. Fox: "Stop thinking about where you're going. Think only about where you're going to put your foot when you take your next step." (That's me paraphrasing Fox's PT.)

Merry Wednesday, Barb!
Ray (@ray666)

Jump to this post

Hi Ray (@ray666),
Very timely and wise advice but golly, it sure takes my already minimum multitasking level down a notch. I guess if I go to negative "one" I'm in even deeper trouble than I thought!
Here's to a Cheery Thursday!
Barb

REPLY

Thank you, thank you, thank you
I thought I was going crazy until I read your info about loosing baa as lance when making a turn. I have neuropathy in lower spine and both legs and I couldn’t figure out why I was having a tendency to want to fall when making sudden turns. I have practice Tai chi for some years and have a pretty steady balance and so far I haven’t fallen.

REPLY

Good Day all. Apologies if this is a long intro, but this is all quite new to me. I am in the process of trying to determine cause of numbness in my feet, and now a pinky finger on my right hand. Right now, I have what I think is Neuropathy, but I guess it could be Radiculopathy. Still undiagnosed.

In fall of last year, I noticed the bottom of my heal had become numb. I had no idea the cause. Don't recall being in any accident. No illness etc. In the last 2-3 months the numbness developed into tingling and began to spread on the outside of my feet, eventually to include my 4 outer toes and the bottom of my foot on my right side. The left side is not as bad, affecting just the outer two toes at time of writing this. In the last 2 weeks, I feel numbness in my pinky finger on my right hand.

Needless to say, its got me freaked out. My family doctor checked my blood for B14 deficiency, and Diabetes. All clear on that. She has also put me in for a vascular test on my feet, to rule out circulation issues.. I went to a Chiropractor and a Physio clinic about 5-6 weeks back, to see if they could suggest anything. Both suggested possible entrapment (pinching) of my S1 nerve might cause this sensation. I did not have any numbness in my finger at that point. The physio suggested I might want to rule out MS, so that really was troubling to hear.

I have a friend who is an orthopedic surgeon. He checked me physically for MS symptoms and told me it is highly unlikely that that is what I have. I'm still a bit freaked all the same. He booked me for and MRI, which I just had yesterday. Queried a drug I took last year for toenail fungus (Terbinafine). Wondered if there was a link there. I guess I am waiting on results of the MRI. The only other notable thing I can recall late las year is that I had a quite painful insect bite on my back. Painful enough that it took a week or so to settle. Thought of Lyme disease here, but again, no other symptoms present for that.

As for my physical state, I have had no back pain of note, and I am generally, quite fit for a 63 year old. Could probably shed 15 lbs but my I'm reasonably happy with my weight. I recently hiked around Zion National park, and did several hikes at elevation in Bryce Canyon too. All with my tingling feet. In the last month, I did find out that my blood pressure was up (no kidding) and have stated taking a diuretic for that. Did not affect me hiking whatsoever.

My employment sees me out on a boat, and I am often in very cold (feet and hands) conditions for several hours a day. I do use hand warmers to control some heat loss, but it still gets pretty cold. Don't know if this can be a factor.

I guess, by posting here, I am hoping to determine if what I experienced with my feet and hand are classic neuropathy symptoms that everyone encounters. Again, apologies for the length of this post, and thanks in advance for any help, advice, comments, further questions.

REPLY
Please sign in or register to post a reply.