Peripheral neuropathy, what to expect?

It started at least 15 years ago with a tingling in the toes of both feet. Gradually, the tingling spread to the feet. Aside from the tingling, the only symptom is a certain unsteadiness on my feet, especially on uneven ground.

When it started my GP sent me to a neurologist who gave me a rather unpleasant test that confirmed that nerve conduction was slow but made no treatment recommendation and told me to come back in 18 months. For what? Another test. I ignored that since why bother with a diagnosis if there is no treatment?

My question is: is this likely to keep getting worse and is it likely to eventually lead to constant pain, as I have read that some suffer? And is there truly no treatment? At the time I was no diabetic, but beginning to get there. Now I considered diabetic but it is well-controlled by metformin and the A1C is generally about 5.8%.

“For what?”

Possibly to see if, and how fast, it is progressing, and from there formulate a treatment plan specific to how your symptoms are manifesting. In doing so, potentially keeping it from getting worse or even painful.

Smart money is on take your questions to the Dr, not the Internet. Just one opinion, YMMV !

And Good Luck!

68 here, I started experiencing numbness in the feet a few years ago actually about 10 years prior to that bit it was more intermittent. Last year I discovered that mine is tied directly to my smoking. If I smoke less than 1 pack a day it seems to be isolated to my big toes. If I smoke two packs in a day all my toes and part of my foot is involved. It has encouraged me to limit my smoking even though I know it is crazy I am not quitting all together.

I have this from spinal issues including severe stenosis, a herniated lumbar disk (surgery helped tremendously), nerve root impingement in my neck (surgery helped tremendously here too), and quadrilateral space syndrome on my left.

I have pain every day, tingling, numbness, clumsiness, weakness, and partial paralysis in my right foot.

It isn’t that big a deal, except when something is flaring up and I get another surgery or some other treatment. There’s a big difference between daily pain and constant pain, and there isn’t much this prevents me from doing. I think this is statistically a pretty common part of aging, and it’s a very big reason people grow lame, but there’s a lot about aging that compromises bodily things.

Interests inevitably evolve, and mine tend to keep evolving away from stuff that challenges my body these ways. Just the other day I was talking with a couple of people who are into rock climbing, and we were trying to pin down the part of the thrill that comes from doing something truly dangerous. I have not the slightest desire to climb rocks and don’t think I would if all these medical issues vanished, but I had a great time trying to understand the feelings we were figuring out together.

Depending exactly on what is going on with you, you might expect your extremities to function less well as time goes by. I get very frustrated trying to pull one coffee filter out of the box because separating layers of paper turns out to require a lot of dexterity. When Roz Chast described her father as opening packages so clumsily that they looked like a raccoon had opened them, I completely identified with it. And, yeah, it may hurt some.

Did the neurologist say that time and further testing would never gain you any treatment recommendations? Or did they simply not start any treatment this time? I’ve been on a few meds that help with this issue, though they all bring side effects. Gabapentin was a big help, and steroids can be very helpful for flare ups. Naproxen has been helpful sometimes too, as have opioids. I am not on any now. If you have tingling plus unsteadiness especially on uneven ground, might it simply not have been time yet?

I’ve had success relieving the pain of my diabetic neuropathy with OTC capsaicin cream.

Link to Web MD capsaicin

Link to Mayo Clinic capsaicin

Warning: This stuff is made from hot pepper juice. Start slowly, and until your feet are used to the stuff, apply lotion first. Wash hands thoroughly after using (I use Dawn to remove oil). Keep hands away from eyes and mouth.

Capsaicin can also be used to treat arthritis pain (e.g., knees), and it will cure toenail fungus if used long enough.

If a store carries the stuff, it’s usually with the arthritis medicine.

Have you had an HIV test recently? A close friend of mine was diagnosed with Peripheral neuropathy soon after testing HIV positive. The Peripheral neuropathy progressed quite quickly and now, at 32, he can’t walk.

Or maybe just wear latex gloves?

I’ve dealt with peripheral neuropathy for many years now. Alas in mine it simply started with pain; a burning-tingling feeling in both feet.

Despite a few passes by my primary care doctor not much seemed to help. Then since late last year I’ve had a series of bad back pain that led to some spinal injections (facet joint injections and medial branch nerve injections in lumbar spine). And though those injections only helped the back pain a little bit it completely relieved the burning pain in both feet - at least until the medication wore off in a few weeks.

So… the pain in your feet might be linked to a low back issue. Maybe. I’m no doctor, much less your doctor.

And after the foot pain came back my doctor prescribed a low dose of a tricyclic antidepressant. That has worked reasonably well on an ongoing basis so at least I don’t lose sleep due to pain in my feet. Now pain in my back… that is another story.

No and I don’t plan to. Believe it or not, my wife and I form a sexual island. Well, I am certain about myself and as certain as it is possible to be about her.

Anyway, I should have mentioned that I am 80 and no, the neurologist never suggested there was any treatment, only that I should get tested again to see how it is progressing. Well, I can tell how it is progressing and I found the test quite unpleasant. Since the tingling does not in itself bother me, I was mainly trying to find out whether I should expect to go on to painful symptoms. What I found by googling wasn’t much help.

I have nerve damage from a back injury. Pain, tingling and numbness in my feet and lower legs. Cymbalta has helped. I note that gabapentin was mentioned on the thread, and that helped my husband with nerve damage in his wrists. Lyrica is another medication I often hear mentioned for this type of application.

In other words, I would suggest speaking with your neurologist and discussing your options. There may well be a treatment option that could help.

ETA: I see that you were primarily interested in progression, not treatment. Apologies that I don’t have more information in that area, since my experience is all injury related.

I’ve struggled with peripheral nephropathy for decades. About 10 years ago I started taking a formulation of Vitamin B-12 called methylcobalamin. It appears to alleviate symptoms for many people with this condition. One of the difficulties for me was finding it in local stores so I generally order online.

As for progression my own experience has been mostly been a series of acute “flares” that cause significant pain and debilitation with each event. After the flare subsides my set point of “normal” functioning goes down a bit but it is never as bad as the actual flare appeared to be. However, I am always left with either some loss of sensation, balance or decreased function. I adjust and keep on doing what I can do. Over the years I have had to give up many physical activities that I loved, design alternate sleeping arrangements (a recliner in the living room), change my footwear, etc.