what is like to experience neuropathy as we age

Hello, nekcarolyn (@nekcarolyn)

Welcome to the neuropathy forum! I've been hanging around here for about two years. I discovered Connect shortly after I was diagnosed with chronic idiopathic axonal polyneuropathy. That's quite a mouthful, isn't it? 🙂 My brand of peripheral neuropathy, or PN, is large-fiber, so, in one sense, I'm fortunate in not having any pain, nor any bothersome numbness, for that matter; my one symptom––and it can be pretty annoying––is poor balance. I'm still able to get around, however, although with the aid of a cane when going about in unfamiliar surroundings. My balance woes have been with for more than 10 years, at first only as brief, easily dismissed episodes of feeling slightly off-balance. These episodes were so slight that I never bothered to mention them, and since, despite feeling off-balance, I hadn't fallen, so I never mentioned any concern to even my primary doctor. As the years went by, my balance did grow worse; I had the occasional fall (never with any serious injuries). About two years ago (about the time I was "officially" diagnosed as having PN), the worsening of my balance seemed to level off. In these past two years, my balance has remained about the same: not so bad, but could be a lot worse. I tell you all this as a way of answering your question: Must my PN get worse? I believe the only reasonable answer –– going only by my experience –– is: Not necessarily. I hope, as time goes by, you'll be able to say the ame, too. (By the way, I predict you'll get lots of replies. Your question is not only a great question; for those of us with PN, it's a universal question, too.)

Cheers!
Ray (@ray666)

I have peripheral neuropathy and have tried many cures which work for a while and then stop working. I have tried rubbing liquid magnesium on my feet. Taking six Alpha Lipoic Acid tablets each day. Wearing compression socks at night. None of these now work and last night was the worst. My foot feels as if it is being held into the centre of a fire. It is unbearable. Does anyone have any suggestions?

@nekcarolyn
First of all I don’t believe in trying to predict the future at any specific time. I will deal with whatever (if anything) happens in my life at that time. What good is it going to do to worry about the future. As they say 99% of the things you worry about never happen and the other one percent is going to happen regardless, so I don't see the point in worrying. What I can say is that as I have aged my neuropathy has gotten worse. Although my neuropathy, as far as my pain is concerned, it has actually gone away even though my neuropathy has advanced to stage four. Now I only have numbness which is much more tolerable than the pain. But that's not to say yours will react the same way. Not all neuropathy progresses, especially not to paralysis and amputation that many neuropathy cure pushers claim just so they can steal your hard earned money on fraudulent products.
If it sounds too good to be true, it probably is. I have tried Gabapentin and Lyrica but I tried them primary to help seizures. Neither worked on my seizures nor neuropathy.
If you must worry manifest it in a positive way. Neuropathy can also improve.
Take care,
Jake

Sophie please check my recent posts..I have some neuropathy in hands and don't want to re-type. Steve

This is a really interesting question and I have been wondering myself.

@nekcarolyn, I was diagnosed via EMG with age-related ideopathic peripheral neuropathy in 2021 (age 74). I told my PCP that I was NOT conceding to old age!!

I know now that I had the symptoms for at least two years prior to the EMG. The soles of my feet itched like crazy which is what precipitated the EMG.

Until 2024, the discomfort was mild, bearable but expanding. Last year I started waking during the night with burning, squeezing pain in my lower legs and feet. My PCP prescribed 300 mg of gabapentin to be taken twice a day. I found it did help with the nighttime issues but made me very drowsy in the daytime so I backed off to taking it just once a day, before going to bed.

A neurologist I consulted prescribed an additional 100 mg of gabapentin so I could fine tune to the dose needed to help me get through the night so I currently take 400 mg as well as magnesium and super B complex supplements. That regimen gets me through the night but by morning is wearing off and the pain and burning sensations return until I get up and moving around.

At age 78, I'm still very active during the day so I don't notice the discomfort as much. And so far my gait is (mostly) unaffected but I can best describe it as feeling like I'm walking on marshmallows. Weird. I've also been noticing that the PN sensations are starting to move up the outside of my thighs.

I'm glad I found this forum because I've learned that I'm definitely not alone in this journey with PN. I also recognize how I could be so much worse off. Counting my blessings. Maybe someday there will be a "fix" to this.

I have had neuropathy for about 5 years and was panicked when it first started and imagined I’d be in a wheelchair by the age of 70. Although it is slowly progressing, my feet seem to adapt, I am balanced and I can walk, but not very well when barefoot. I have no pain, just numbness, and according to my EMG it is coming from my back but I haven’t followed up on any additional testing.

Interesting comment about the "neuropathy cure pushers." I went to a "free" presentation. First, out came a long video with testimonials. Then, the horror stories with photos of people with amputated legs. Then, badmouthing the medical profession. Finally, a "free" diagnosis, but one's spouse must be present. I really knew I was in a scammer session when he said that they can give loans at 0%.

I have stayed away from gabapentin, 'No pain just numbness. and it is going up my legs, too.
people who responded to me are in their 70s,
I wonder what it will be like in our 80s +

thanks I like all the different perspectives