Living With Large-Fiber Neuropathy

Posted by Ray Kemble @ray666, Feb 27 1:45pm

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.

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@njed

Hi Ray - I noticed in your post that you are "wobblier at certain times of the day" and that I also find interesting. I'm sure you mentioned this to your doctors. Any comments from them? I have similar symptoms to you, but my lack of quality balance is constant. It might be slightly worse in evening, but I contribute that towards being tired at end of the day. Also, does your numbness increase in one leg or both legs at same time you feel wobblier? Ed

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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

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@bjk3

Hi @ray666 ~
You speak the truth. Stability is essential. I just bought my first pair of Brooks today. I have a fine Running Wild Store close by so if tomorrow they don't seem to work out, I can return them and try again. Up till now, I was wearing Saucony but at the present time that company has decided to compromise the stability factor for a more flexible option. It does seem an endless quest. Wishing you success, Ray! And a good week 🙂
~ Barb

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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

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@ray666

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

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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

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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.

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