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Unbearable Neuropathy

Neuropathy | Last Active: Sep 25, 2023 | Replies (67)

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@ray666

Hi, Louise (louise@lou)

I have just the opposite: low arch, or more correctly: no arch, and that's in both feet. If memory serves, I was in grade school when I was first told I had flat-ish feet (no longer -ish, however). When I was in my 30s, I took up running, at first participating in the more modest 5K and 10K events, but, before long, running half-, full-, and once-in-a-while even longer marathons. Ninety percent of today's joint woes are my own doing. LOL You say your one foot is thinner. Oddly enough, my feet – both of them tend to be swollen. My primary has suggested a number of different possible causes and hoped-for solutions (e.g., compression stockings), but nothing those far has helped to reduce the swelling. Is the swelling in any way related to my neuropathy? I wonder.

I've been very concerned about muscle atrophy. Because distance walking (and by "distance," I'm talking only the length of a city block) is no longer fun, I try to be diligent about daily rides on my stationary bicycle, adding distance weekly. I find it puzzling – pleasing, but puzzling – that my neuropathy appears to have no negative bearing on my cycling; in fact, my balance seems to improve as a result – never great, but better, and these days that's something to be grateful for.

For balance, I have a slew of balance-improvement exercises in the form of a gazillion handouts from years of doing PT. Today, I'm no longer going to PT but doing balance PT here at home as a student of an online course. I've been doing the online course since last fall. One positive result of the course, I'm almost certain, is that I've not fallen; my "recovery" skills (fall avoidance) have improved measurably.

As is the case for many of us, after dealing with neuropathy for several years, we've created relationships with what seems like a battalion of specialists. I sure had. A few months ago, I decided I had the cull the herd. I chose the specialist who seemed both the most knowledgeable and the most interested in me, not as a nameless patient but as an individual. He is a neurologist, of course, but has further refined his practice to physiatric medicine. I found him as a result of asking my primary for the name of a neurologist who makes an added effort to consider a patient's whole being, not only their neurological presentation. I regard this doctor as my "lead" doctor. That alone has simplified my life – and opened up whole days (no medical appointments!) on my calendar.

All the best to you, Louise! Let's keep working away at this.

Cheers!
Ray (@ray666)

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Replies to "Hi, Louise (louise@lou) I have just the opposite: low arch, or more correctly: no arch, and..."

Hi Ray, That's great you found a caring neurologist who can really help, and wish you all the best.
I've been through such a herd of orthopedic surgeons, pain specialists, and early on did see a neurologist who was absolutely no help at all.
But I did find (on my own) where a lot of the pain is coming from - it's called pes cavus, another neurological disorder. It's a foot with an abnormally high plantar longitudinal arch. It can be straightened through surgery, but due to other procedures, and the fact I have a highly sensitive foot, that isn't an option. So along with contracture of the plantar fascia and cockup deformity of the big toe, I can only hope it doesn't get worse. Orthotics don't help nor Pregabalin with the pain. Tried compression socks, and they help relieve the pressure from my high arches, and increase blood flow, but I don't know about wearing them all day. Just sick about it really as I was like you, so active in the past and now I have little incentive left.
Do go on my stationary bike, but life just isn't the same without the freedom of motion.
Your positivity, though, is encouraging to hear, and always glad to read your posts. Shall update in future if this deformity can somehow be corrected. My best to you also.