Living with Neuropathy - Welcome to the group

@matk
I'm sorry to hear that you have neuropathy.
If I were you, I wouldn't fear what may or may not happen in the future. 99% of the things you worry about never happen and the other one percent is going to happen regardless so what's the point in worrying about it.
I developed neuropathy 40 years ago with all the horrible pain & balance issues. Many years later the pain went away replaced by numbness. The numbness went from my feet just past my waist causing ED, bladder & bowel complications. The numbness eventually regressed and is mild now and mostly affects my feet with some in my ankles and lower legs. I do have weakness in my legs. It's difficult to tell how much of my balance problems are related to neuropathy and how much is due to my seizures and seizure medications.
Take care,
Jake

Jake, thank you for your thoughts. I am generally doing well with the Gabapentin (1200 mg 3x daily), but it's the occasional night when all my pains are flaring up, including the prickling that started it all, and I think if this is what the future is ... I am not sure I will be able to bear it. That is my fear.
But you're right. It is not as though worrying will change things. I take long walks every day because it makes me feel better overall and seems to keep THOSE nights away.
Thank you,
Mat

@matk
Hi Mat,
I hope others who have had neuropathy for decades reply and tell if their neuropathy got better or worse, Not that that will make any difference in your situation, but it would be interesting. Even though my neuropathy is now stage 4 I feel it is much better than it was 40 years ago even with the complications.
At least the Gabapentin helps you. I also took 3600 mg of it and it didn't help my seizures or neuropathy. Nor did the Lyrica. I believe you'll bear what you have to and be grateful the Gabapentin helps.
Your future may be like mine and your neuropathy may improve. Always think positive! I bet it will improve how you feel and your overall health. My neuropathy was believed to be caused by certain seizure medicines. Long after I switched medication my neuropathy got better. since you stopped the antibiotic and hopefully never take that one again maybe your situation will turn out to be like mine.
Take care,
Jake

I took my husband off Gabapentin. He took it for many years. Not good for your kidneys. He is 86 and diabetic.
It did not really help he said. I found a cream called Mama Bear Oasis that is helping myself and my 87 yr old friend to calm down our feet to be able to sleep at night.A God sent. Wish there was an all natural pill to STOP THIS DISEASE IN ALL OFF US.
Praying for u Matt! 💕 Mother Murphy. Am on New Hampshire

I have some sort of nerve inflammation issue with my Sciatic nerve. This condition has cause partial Paralysis of my left foot. I have undergone several MRI’s, EMG’s and an epidural procedure. My docs have found no sign of a pinched nerve. Along with this paralysis, I also have the numbness, pain and tingling sensations typically described by people who suffer from regular neuropathy. I’m wondering if others have had this Paralysis accompanying their neuropathy. If so, what was your diagnosis? My doctors are still working on mine.

I have always had poor balance because of a congenital defect that left me with one leg 2 cm shorter than the other. Now with the PN, it's even worse. I'm 81 years old and my biggest fear is falling. I worked in a long-term hospital and I have seen what a simple fall can lead to. I'm especially fearful of turning or changing direction. Like so many with PN, I have diabetes. However it is well controlled. I'd like to hear what others are doing about footwear and socks, also exercises to maintain blood flow because I sit alot.

Welcome @cariloo, It's great to hear that your diabetes is well controlled as I'm sure that is one of key things to keep the neuropathy from getting worse when you have diabetes. I've been in the pre-diabetes category most of my adult life and pretty much ignored the warnings until my neuropathy started progressing some and I knew I had to make some changes. I shared my neuropathy journey along with other members in another discussion here - https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/.

Since you mentioned footwear and exercises to help with your neuropathy, you might want to scan through these related discussions to learn what others have shared:
-- Socks - What helps with Neuropathy?: https://connect.mayoclinic.org/discussion/socks-1/
-- Neuropathy: Anyone found comfortable footwear?: https://connect.mayoclinic.org/discussion/neuropathy-35/
-- Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/
-- FPN Webinar: Physical Exercise and Peripheral Neuropathy - https://www.youtube.com/watch?v=4TBKbUWE7N4

I think a lot of members also find water exercises helpful when you have neuropathy. Have you tried any water exercises?

Hello, @cariloo,
I've not seen anyone on Connect say that they are especially fearful of turning or changing direction (resulting in a fall), but this is exactly my greatest fear, also. It happened last month as I was putting away groceries and decided something belonged in a different place. Thanking God that it didn't result in a break or even a bruise but it sure alerted me to how readily this can happen and how serious the consequences can be.
I have experimented over the last 30 years with many remedies (hopeful) for my PN, from a menthol spray to
Class 4 red light therapy to PT, and currently am finding the most complete relief in a combination of Pregabalin, Tramadol, a recumbent bike, my wonderful chiropractor of 25 years, and an investment in a BEMER system, purchased through my physical therapist. It's too complicated to explain in a post, so better to just google it and get the facts from the manufacturer. Expensive? Yes. Works? Yes. Helps me to stay independent, living alone (with my dog!) and in control of pain, and more content than I deserve. I'm 77 and female and live in the midwest with all four seasons ~ and some in excessive ranges.
As for socks and footwear, what works best for me are the running shoes with lots of support and basically no flexibility. They keep my feet flat on the ground - you might say well grounded. I buy a full size larger than what they fit me for in the store. For me, the best socks are thin and not at all binding or tight. You didn't mention if your feet feel cold or if you live where it is cold part of the year. For indoor shoes, I love allbirds wool loungers and wool mules. No socks needed! Where I live they can only be purchased online.
I wish you all the best as you navigate the therapies that work best for you.
Barb

Hi I am taking a turn in direction but I thought that you all might have some ideas for me either based on your own experience or same with a parent. I gave both balance issues and mobility issues and I want to order a lightweight portable walker. Till now I have used my mother's but she was 6-7 inches shorter than me and by the time she needed a walker she was no longer driving. So I am looking for a walker with probably height adjusted handles and the key thing is lightweight as I am the person taking it in and out of trunk. Any ideas would be helpful. I am currently looking on Amazon so one that needs to be put together at home is fine. Any recommendations are appreciated. Thanks! Susan

Hi, Barb

It surprised me when I read what you said: "I've not seen anyone on Connect say that they are especially fearful of turning or changing direction (resulting in a fall) … " ––surprised me only because, as my balance has improved, turning or a distraction from either one side or the other has remained one of my greatest concerns. A daily example of this concern is going down the walk to fetch our morning newspaper. Most often I'll find the newspaper lying in rhe middle of the sidewalk. Before I dare bend to pick it up, I'll always look carefully left and right, concerned that a pedestrian may be approaching. With my unreliable balance, the last thing I need is to be unaware and suddenly hear an approaching neighbor call out "Good morning!" or or the patter, pat, pat of an onrushing jogger. Just another of PN's delights!

Cheers!
Ray (@ray666)