Living With Large-Fiber Neuropathy
Hello,
I’m 79. I was diagnosed in 2022 as having idiopathic large-fiber neuropathy (LFN). My symptoms are bad balance, weak-ish legs, and a wobbly gait. Mercifully, I’ve no pain. Understandably, much of the discussion on Connect concerns small-fiber neuropathy, which is more prevalent. I would welcome hearing from others who, like me, have been diagnosed with LFN and are learning to live successfully with it.
Ray (@ray666)
Interested in more discussions like this? Go to the Neuropathy Support Group.
I have been wearing Hoka One One now for years, and I find them to be the most comfortable sneakers on the market. Luxuriously padded and thick-soled. For sandals, I bought a pair of Teva and they are wonderful. Good luck.
Ditto, ditto, ditto, Ed! I have mentioned "certain times of day" to my doctors but never elicited much of a response besides, "Mmm, that's interesting." My overall balance, similar to what you say about yours, is never first-rate; I'm always having to be careful. But also similar to yours, mine is often worse (more challenging) in the evening, which I, too, attribute to a full day's leg fatigue. A night's sleep, fortunately, gets rid of that fatigue. Numbness in one leg or both? I'd have to say both––although I'm a bit hesitant to call it "numbness;" what I feel is much the same sort of leg weariness I used to feel after running 10-15 miles: muscle achiness, especially in my quads, and knee unreliability, like if I do pay my knees strict attention they might just go out on me, or "flamingo" (bend the wrong way). Of course, this may be numbness, just a different manifestation than I imagined. –Ray
Hi, Barb (@bjk3)
It really helps to have a good runners' store nearby. Until I retired from my day job in Boulder (I live 40 miles away in Denver), I was in an embarrassment of good runners' stores every which way I turned. Boulder, as you probably know, is a runners' Mecca. Not only were the employees in the stores knowledgeable, they were patient, keep good records of your past likes and dislikes, and cheerful if you found that you had to return a pair of shoes.
I wish you success, too, Barb, in your quest for that perfect pair of shoes! 🙂
Ray
Thanks, Ray (@ray666) 😊. The employees at Running Wild are just like those you have happily encountered. It sure makes a difficult task a lot more pleasant to tackle.
Blessings!
Barb
I hope my experience can help someone. I to have been down the road of looking for comfortable slippers or shoes. My journey has produced some running shoes that have so far worked for me. First, the Brooks line of shoes have been great. Specifically, the Brooks Ghost 15 and for people with stability issues I would try the Brooks Adrenaline GTS or Brooks Glycerin GTS both intended for stability when running.
I have also found the New balance 880 and 1080 shoes comfortable. However, the most comfortable New Balance shoe that I own is the Fresh Foam More V4. It's like walking on clouds with the max cushioned sole.
I have about a dozen pair of running shoes as part of the trial and error. Most are comfortable but, some more than others. I know that they can be expensive, but I have bought every pair on Ebay. And have not paid more than $65. I guess most people run in them a couple times and decide that they don't like them. Every pair has been in like new condition no smells, scrapes or dirt. So, I think if you don't have a problem with used shoes Ebay is a great resource.
If anyone wants to research running shoes? The web site runrepeat.com is a valuable resource. They really test the shoes and even cut them in half to show the construction of the shoe.
I hope this helps.
What do you like about the Topo? I just ordered the Ultrafly5 because I need a very wide toe box in a stability shoe, with a lower drop. These are a 5mm.
Any feedback is appreciated.
I just ordered the Topo Ultrafly5 wide because I am searching for a wide toe box in a stability shoe, with a lower drop (this one is a 5mm). I ordered it from the Topoathletic.com which is the maker's site because they let you wear it outside and return it if it doesn't work for you.
Last year, I tried Hoka Bondi 8 which is heavenly comfortable but not stable enough, so I use it as a house shoe when I want something soft after wearing Birkenstocks. And even the wide cramps my baby toe on one foot.
I also tried Orthofeet and found it comfortable, but more squishy than stable, and the shoe is shaped like a rectangle, not a human foot, so my toes tolerate them because the fabric stretches, but....
If the Topo doesn't work, I will try the new stability Altra, but the reviews aren't very good for the new ones. Or I might try New Balance again, but the toe box is challenging. My old 1540v3s are very stable, but hard, and even the D is too narrow in the toes, and it is a 10mm drop, which is too high (hurts the bunions). So I might go to a NB store and try on the new 1540v4 which is a 6mm and comes in a 2E and supposedly is more cushioned.
Alternatively, I will forget these, and try the Dansko Paisley sneaker and the Birkenstock Bend and maybe a Finn Comfort, if the toe boxes are wide enough, but these may be too hot for walking in central Florida in the late spring/summer/fall. More of a shoe to walk in cities?
Brooks Ghost Max 2 supposedly has a decent toe box and a lower drop, but is a neutral shoe, so I think it will feel more like the HOKA, which isn't stable enough when I walk (worse when I add orthotics, custom or OTC). Brooks customer service told me this is their only model now with a rounder/wider toe box).
Sometimes I just wear my Birkenstocks with the Birkenstocks socks. I'm breaking in a pair of the Milano which is a sandal with a backstrap and shearling, which is soft, so I may end up in those.
Any feedback about any of these shoes is appreciated.
I wear brooks. They have a wide toe box and different stabilities depending on the shoes and a lot of different types. Also for a house shoe I would recommend oofo spelling?
I thought the same about Orthofeet. What a confusingly shaped shoe.
I like Topo’s Atmos. After writing their customer service for help, they thought the Atmos would fit my skinny foot that needs a wide toebox and a narrow heel. It’s a weird combo I know and neuropathy has made it all the more complex.
(I can’t wear Hokas, even their wide widths make the neuropathy worse. )
Topo recommended the regular width in the Atmos because it runs verrry wide and I could get a narrow heel which isn’t available in the wide width. Even so, I have to still wear thick socks.
The sole is fantastic. Not a marshmallow. But lots of cushion and support.
I’m almost ready for another pair and will definitely write customer service to see if they would recommend one of the new styles before I order.
Thank you! This info is very helpful! And I am going to look at the Atmos again after reading your description. Actually the wide toes with narrow heels is a more common shape than you might expect. For years, New Balance offered shoes made on the SL-2 last which is exactly this shape, but then they stopped making most of them, and in the walking shoes, changed it to wide heels. Sigh. I'll let you know how the Ultrafly5 fits. Thanks again.