Living with Neuropathy - Welcome to the group

Welcome Geoff @gmehl, That is certainly a mouthful to remember. I only having to remember idiopathic small fiber peripheral neuropathy but I do get to add to that 🙃-- polymyalgia rheumatica, primary aldosteronism, lymphedema and a few others that come with old age. It does help to keep a smile on your face. We are definitely glad you found Connect!

There are a lot of different discussions on Connect in the Neuropathy group that you might find interesting if not helpful. You can also search for topics in the group search box. Here's a list of the discussions in the group.
-- https://connect.mayoclinic.org/group/neuropathy/

How long have you been on your neuropathy journey? Found anything that helps some?

Hi John -- thanks for the welcome and I'll concede the title of medicalese to you with that list of yours. All I know about mine is that its one of the rarest and there's no research on it (for lack of subjects, not adjectives). I'll spare you the highlight reel of how-I-went-from-happy-n-sassy to aw-man-this-rots, but bottom line is I was getting up from a nice night's sleep on April 22, 2020, and promptly fell the floor with rubber legs. Literally all downhill from there.

The low point was a year later at a rehab facility (broken hip in a fall) where I was actually totally helpless. I'm a very active gardener (native plants, ecology, all that) and I got it into my head that I was not going to quit, period. So the docs were loading me up on mostly the usual gabapentin, cymbalta, later a flirtation with prednisone and, of course, good old IVIG (I personally think the lemon-lime flavor is best). I'm thinking now that I hit something of a remission early last summer (while in cardiac rehab for bypass stuff), but since then, not much progress.

Still, I'm trying to work as normal as I can, going for little accomplishments, figuring out adaptation, forcing stuff like walking without hobble, etc. Giving up driving a car was tough. Reading the literature on all things neuropathy was a challenge and shirt cuffs are a pain!

All in all, not terribly exciting -- so thanks for reading and have a great day! Now I get to go shred two acres of leaves.

Why did you have to give up driving? My neuropathy is so bad I walk sideways or just sit and pray the pain will stop. But it doesn’t. Constant pain. I’m not diabetic and Gabapentin, Cymbalta and Lyrica make it worse. I have tremors from the medicines and life is hard.

Thanks for your question! I had been holding out hope for "normal" in the spring and even began to practice in the driveway and the very lightly-trafficked road we live on. The problem was simple: my feet would vary from barely there to totally numb, like a switch blinking on and off.

I couldn't find the brake pedal, and even then the subtle pressure on the accelerator and brake was impossible.

Then I discovered the sheer joy of reverse. Looking over my shoulder, my right foot would slip off the brake and onto the accelerator -- hard. The neurologist said the nerve damage may be permanent and so it was time to get out of the driver's seat.

My venerable 2004 Corolla had depreciated to nearly nothing but was in excellent condition and I had thought I'd get maybe another 10-12 years out of it with the now-low mileage travel. My granddaughter was in desperate need, so I gave it to her with the counsel to take good care of it and it would serve her well.

She totaled it two months later on an icy patch of road and the entire saga came to a melancholy end.

I had thought about those hand control modifications but at my age and with the nature of day-to-day activities (very avid gardener), I decided it wasn't worth it.

I don't envy your constant discomfort and the frustration that goes with it; my particular brand of PN often means I can lose feet feeling at any time, often in mid-step. If lucky, I won't fall but do stagger like a drunk. Learning to adapt has been an interesting challenge.

Best wishes in finding a solution that works for you!

I am an 80-year old pianist who has neuropathy. My problem is that I can't feel the pedals, so my foot slips off without my knowing it. This will probably end my playing unless I can find a solution for the problem, perhaps a shoe or shoe attachment that "locks" the foot to the pedal so it can't slip off. I'm sure this is not a unique problem, so I would be grateful to hear from others who have dealt successfully with this. I don't have any problems so far with pain.

My problem with neuropathy and piano playing has not been pain, it's that I can't feel the pedal and my foot slips off without my knowing. I've been experimenting with shoe additions that hold my foot to the pedal. I have been taking Simvastatim for years and now I hear that statins can cause neuropathy, which my doctors never mentioned. Maybe they felt my dosage was not high enough to be a cause. Oh well. Love to hear from anyone who has dealt with this problem.

Hello @alces, Welcome to Connect. Sorry to hear your neuropathy symptoms are making it difficult to play the piano. There is another discussion on the numbness only symptoms that might be helpful.

-- Neuropathy: Numbness only, no pain:
https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/

My doctor also wanted me to go on simvastatin but since I had been researching possible causes of my neuropathy and learned that statins can induce neuropathy I decided to opt for natural ways to work on lowering my cholesterol numbers. I think it's always best to discuss alternatives since there are cases where your life could depend on the medications.

A few years ago I saw a product under development at the Minnesota Neuropathy Association meeting. It was for people with diabetic neuropathy but could actually help others with feet feeling issues. Here's the website which might be worth discussing with your doctor.
-- Walkasins Device: https://rxfunction.com/our-product/

Have you done any research on items that may help?

I gave up driving for the same reasons you did. Now my wife does all our driving.

@alces. You bring up a good point. Over the past 5 years I have tried out many new meds and no drs have said anything about possible side effects. I don’t think drs are doing this anymore. Am I missing something?

I don't think so. Seems to be a trend!