Living with Neuropathy - Welcome to the group

Hello...I'm new to this forum. I'm searching for any info to help me manage this baffling condition that started 8 years ago. It started with my sudden inability to push off onto the ball of my right foot. It became crippling to the point where I could barely walk. I went to a foot and ankle orthopedic doc who put me in a boot thinking I had peroneal tendinitis. When that didn't help, he recommended a neurologist. I had all the nerve conduction tests which revealed that it may be a pinched spinal nerve, radiating into my leg. From there I consulted two different neurosurgeons who could not recommend any surgery because there was no clear site of spinal nerve compression on the MRI. From there I was off to pain management where I had numerous steroid epidurals, which did nothing.
So I take gabapentin 300 MG 3 X day and mertazipine 30 MG. I'm able to walk short distances, but my feet hurt like I'm walking on rocks. So I swim for 2 hours every day which I've found gives the greatest reprieve. Swimming for me is my therapy. I have trouble sitting...my right foot burns and feels like a tourniquet is tightening on my leg. So I have to recline off and on all day. As the day progresses the symptoms worsen.
My life is so radically changed dealing with this idiopathic neuropathy. In the beginning, I felt suicidal because I went overnight from being a hiker, dancer, active 63 year old to a painfully crippled person.
Thank you for listening, and I hope we all can help each other cope or find therapies that make life more enjoyable.

Welcome @hurts2walk, I know you mentioned that you have already seen 2 different neurosurgeons along with a foot and ankle orthopedic doctor but it sounds like they still don't know what is causing the symptoms but rather think it may be a pinched spinal nerve. I wonder if it would be worth trying to get a second opinion or seeking help at a teaching hospital or major health facility if you haven't already been seen at one.

@jenniferhunter started a discussion on Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/ that might be helpful.

You mentioned swimming gives you some relief. Have you tried any therapy or PT to see if it might provide some relief?

I have been to the University of Florida Gainsville teaching hospital and have also done physical therapy to mostly try to keep the strength in my hips, but it increased my pain. The only relief that helps is daily treading water in a swimming pool. Without that, I think I would not be able to manage my pain or function at all.

Oops...I forgot to thank you for the Myofacial release info/ site. I will look into that. Thank you so much.

Hi Ray--Interesting that you did serious time in theater! As it happens, I've always wanted to act (or at least joke) and for the last year, I've been taking improvisational comedy classes. We perform in a basement theater under a dentist's office and opposite a jiu-jitsu studio a couple of times a month. At 76, I'm a good half-century older than many of my fellow players. Half the time, I can't understand what they're talking about but it all works, sometimes. My odd gait, I like to think, gives me an undeniable credibility when I portray an old man. My wonderful physical therapist came to one of our performances and she was holding her breath every time I came in from the wings, wondering whether my right foot would clear the foot-high step when I mounted the stage. She didn't even know that I'd taken a fall and sprained my ankle 10 minutes before the lights went down. But hey--the show must go on, right?

Thanks for the info on EP-N5. I'm sticking with my Alpha-Lipoic but I'm not expecting miracles. Even so, I just find it's good to have some quasi-remedy in my back pocket. I'd extend that thought into a theological insight if I weren't so tired right now. I accompanied my wife, a first-time novelist, to a book talk she gave today for a women's group called the Colonial Dames of America. Her book is set during the American Revolution, and the Dames appreciated it. Plus, they gave us lunch. I'm done. Hang in there!

Hi, Steve

I don't blame you for sticking with the Alpha-Lipoic. If you don't see that Alpha-Lipoic is doing any harm (and may actually be doing some good), why not? I'm taking the same approach to my EB-N5––with my doctor's blessing. However, he does check in with me every so often to ask if I've noticed any positives or negatives. Since the jury is still out, the most I can tell him is, "No trends yet, either way." I see it as a Devil you know vs. a Devil you don't situation.

There are so many "remedies" whizzing around. While I'm not averse to trying something new, for now, at least my Devil, I know the approach is keeping me from going crazy.

What's the title of your wife's book? I'm very much interested. As is my partner. She's a poet. And, when my increasingly unreliable balance led to my seeing the wisdom of retiring from the stage (the adage, "Don't fall over the furniture," had become un-funny), I went back to my old love: writing. Until Covid put the kibosh on our program, Mell and I taught a seniors' writing class at our local library for several years. And we're still part of a writers' group. So, my partner and I are interested in all things literary. (Thank goodness I'm not yet too wobbly to hold on to a book!)

Congrats on taking improvisational comedy classes! I dipped my toe (years ago) into improvisational acting, hoping I'd be good at it, but I wasn't. I fled back into the tedious, lonely world of memorizing lines!

That's so true, Steve, even when it comes to our neuropathy: The show must go on!

Cheers!
Ray

Hi Ray--It's definitely a case of "the devil you know"! (Though I'm exploring some new shoes invented by a professor at UC-Santa Barbara, just up the road from here. They're designed to improve the gait of stroke survivors, people with MS, and those with walking difficulties like foot drop. I feel a little odd putting myself in the same group as people with life-threatening disabilities but if the shoe fits...

Anyhow, I'm glad you're thriving on the writing scene! My wife's book is called "Prisoner of Wallabout Bay". It's historical fiction based on the British prison ships in New York Harbor where some 11,000 Americans died during the Revolutionary War. Bones washed ashore in Brooklyn for years afterward and today there's a 150-foot obelisk in the soldiers' memory at Fort Greene Park. I grew up in New York, but who knew? My wife -- Jane Hulse--is from New Hampshire, grew up steeped in Colonial lore, and had never heard about these floating dungeons till she ran across a book about them a few years ago.

I'm planning to get back to writing soon. I suspended work on some short stories when I got the Improv bug but I'll be trimming my Improv activities in the next month or two. I've decided that at this age only chores should feel like chores.

Hang in there, Ray!

Hi, Steve

My congratulations to your wife on “Prisoner of Wallabout Bay”! My partner sends her congratulations, too. We always rise to our feet and applaud whenever we hear of someone who has succeeded in finishing––and publishing!––a book-length project. I’m in admiring awe, I really am.

I hope you’ll let me now what you find out about those shoes the UC-Santa Barbara prof is working on. I’m like most of us, always hungry for a new shoe idea––like a baby bird, my beak open wide, squeaking, “Feed me a new, juicy idea for a ‘perfect’ shoe!” 🙂

You’d think I’d be tired, at 79, of auditioning shoes, forever looking for that “perfect” pair, the pair that not only is the right fit for my feet (size 13, severely flat, orthotics a must, with lots of calloused skin thanks to years of running), but a pair that also “fixes” the effects of my neuropathy (a pair that has me skipping the light fantastic like I was 29 all over again).

You’d think I’d be realistic by now, but still I keep looking. We’ve no good shoe stores nearby, so my partner and I (because of bunions, she’s looking for that perfect pair, too) have taken to ordering online (Zappos, mostly). It seems we receive a pair-or-two-a-week and return a pair-or-two-a-week, forever looking.

It does feel good to be writing again. I say “again,” but I’ve hardly returned to a all-consuming passion of long ago. Writing was always something I’d turn to whenever I was “between shows” (which was more often than I care to admit). Now, thanks to my neuropathy, there’s a certain finality to my being “between shows.” At least with writing, there’s no danger of me tripping over the ottoman––at least not in front of a paying audience. In front of the cat? Well, maybe, but at least he hasn’t just shelled out $$$ to see me play Lear. 🙂
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Regards from the Rockies
Ray!

I came here to try and get some feedback/suggestions. I feel so bad because although my neuropathy in my left leg goes from foot to hip and right leg from foot to thigh, I do not seem to have the consistent pain that others do! I have the occasional brief snap of electricity but that’s it.
I have a difficult time walking and had to give up driving as I can’t feel the gas/break pedals. I’m 76 with an autoimmune disease as well as end stage emphysema so now I’m pretty home bound!

Hey all! Dad Root from Arvada, Colorado here.
Five Grandkids and counting. Like my Dad before me, I was a railroader most of my life. I have been wrestling with my Doctor's diagnosis of 'Idiopathic Peripheral Neuropathy' for five years now. Numb from the knees down, I wear legs braces to help with foot drop when I walk... otherwise I could trip over a darned PAINTED line in a parking lot.
That 'Idiopathic' part of her diagnosis just seemed lazy to me, so I kept digging for more information. My symptoms seemed congruent with Charcot-Marie-Tooth disease.
When I kept pressing the issue with her (the Doctor) & kept sharing articles that I had found, she actually seemed annoyed that I wasn't going to just keep taking pills (quite ironically) for the nighttime pain and just live with these challenges.
That Doc told my wife & I that this disease will eventually kill me...so I changed Doctors. < insert sly grin here>
I have read several articles concerning Stem Cell research, but it seems there are as many 'expert' opinions as there are articles. I will talk to my newer Doc tomorrow to see what he makes of Stem Cell Therapies for Neuropathy. In the mean time, I'll keep on studyin' this thing. Please feel free to let me know about any articles that y'all find... Peace and Love from Colorado, all. -Dad