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.

Hi Ray,

Which house and outside shoes do you have for PN - numb/tingling feet ? I already purchased several house and outside shoes but with no real comfort and relief.

Of course, you have read my stories about diabetes and PN. PN is a uncurable symtoms so for years I have bought many body and feet massagers to bring little relieve with PN.

Thank you.

Thank you!

REPLY
@michhino

Hi Ray,

Which house and outside shoes do you have for PN - numb/tingling feet ? I already purchased several house and outside shoes but with no real comfort and relief.

Of course, you have read my stories about diabetes and PN. PN is a uncurable symtoms so for years I have bought many body and feet massagers to bring little relieve with PN.

Thank you.

Thank you!

Jump to this post

Hi, @michhino

I've been riding the footwear carousel for decades, from years before my body showed the first signs of PN. In the '70s, when Shorter won the Olympic marathon and kicked off the running boom, every runner I knew, from the world-class to the occasional jogger, asked, "What's the best shoe?" Even then, the answer was, There's no one answer. For each of us, it's a matter of trial & error. Today, a half-century later, as a guy with PN, it's still a matter of trial & error. (And with the price of shoes these days, trial & error can be costly.) Until I had to give up running, my favorite outdoor shoes were Brooks. Now, with my PN, I wear (outdoor & indoor) Nunn Bush shoes (from Zappo's). Nunn Bush are not very gung-ho looking, but at least they're semi-comfortable. They semi-work for me, but they might not work for you or anyone else with PN; such is the madness of going round & round on the footwear carousel. 🙂

Good luck in finding your PERFECT pair!
Ray

REPLY

You sound like all my previous doctors...try this and that meds ! ; )

I will attempt online shopping with 30 day returns.

Thanks!

REPLY
@michhino

You sound like all my previous doctors...try this and that meds ! ; )

I will attempt online shopping with 30 day returns.

Thanks!

Jump to this post

Yup, it's a pain: ordering shoes, waiting to receive them, trying them, finding out they're not right, sending them back, ordering another pair, waiting again … on and on. Even my pediatrist––when I asked him for a recommendation––"I can tell you, Ray, what brand works best for me, but that same brand may be no good for you." I've long since learned that expecting someone to give me the perfect answer straight off to any question I might have is a kind of magical thinking. When I find myself on the threshold of magical thinking, I just repeat, "Welcome to the World of Peripheral Neuropathy!" 🙂

REPLY
@michhino

Hi Ray,

Which house and outside shoes do you have for PN - numb/tingling feet ? I already purchased several house and outside shoes but with no real comfort and relief.

Of course, you have read my stories about diabetes and PN. PN is a uncurable symtoms so for years I have bought many body and feet massagers to bring little relieve with PN.

Thank you.

Thank you!

Jump to this post

Neuropathy’s made my go-to Keen hiking boots uncomfortable. So I am wearing fuzz-lined Crocs in the house, Orthofeet around town, and Topo for walking/hiking. Seems to be a winning combo.

REPLY
@piranha

Neuropathy’s made my go-to Keen hiking boots uncomfortable. So I am wearing fuzz-lined Crocs in the house, Orthofeet around town, and Topo for walking/hiking. Seems to be a winning combo.

Jump to this post

"Neuropathy’s made my go-to Keen hiking boots uncomfortable."

I have a near-brand-new pair of Brooks Addiction (formerly my favorite shoe) sitting on the floor in my bedroom. I don't wear them; my PN has made them too heavy for me to wear comfortably.

Ray

REPLY
@ray666

Hi, @michhino

I've been riding the footwear carousel for decades, from years before my body showed the first signs of PN. In the '70s, when Shorter won the Olympic marathon and kicked off the running boom, every runner I knew, from the world-class to the occasional jogger, asked, "What's the best shoe?" Even then, the answer was, There's no one answer. For each of us, it's a matter of trial & error. Today, a half-century later, as a guy with PN, it's still a matter of trial & error. (And with the price of shoes these days, trial & error can be costly.) Until I had to give up running, my favorite outdoor shoes were Brooks. Now, with my PN, I wear (outdoor & indoor) Nunn Bush shoes (from Zappo's). Nunn Bush are not very gung-ho looking, but at least they're semi-comfortable. They semi-work for me, but they might not work for you or anyone else with PN; such is the madness of going round & round on the footwear carousel. 🙂

Good luck in finding your PERFECT pair!
Ray

Jump to this post

My podiatrist told me that crocs and gdefy shoes were the best. I have both, however, for some reason, the rubber irritates my neuropathy and the gdefy are sort of comfortable while they are on but when I take them off, that's when the hellish pain returns.

REPLY
@debduh11

My podiatrist told me that crocs and gdefy shoes were the best. I have both, however, for some reason, the rubber irritates my neuropathy and the gdefy are sort of comfortable while they are on but when I take them off, that's when the hellish pain returns.

Jump to this post

Hi, @debduh11

My situation is a little different. The chief difference is I have no pain, only this wobbly way of walking, wobblier at certain times of day (which I find weird). As I'm a long-time orthotics-wearer, I always assume I'm better off in my shoes with their orthotics (kinder to my ankles, knees, and hips) than barefoot (which I prefer, especially around the house). But either way––in shoes with their orthotics or barefoot without, I can still be darn wobbly. I guess you could say I'm looking for stability more than comfort. It seems an endless, quest no matter. 🙂

Ray (@ray666)

REPLY
@ray666

Hi, @debduh11

My situation is a little different. The chief difference is I have no pain, only this wobbly way of walking, wobblier at certain times of day (which I find weird). As I'm a long-time orthotics-wearer, I always assume I'm better off in my shoes with their orthotics (kinder to my ankles, knees, and hips) than barefoot (which I prefer, especially around the house). But either way––in shoes with their orthotics or barefoot without, I can still be darn wobbly. I guess you could say I'm looking for stability more than comfort. It seems an endless, quest no matter. 🙂

Ray (@ray666)

Jump to this post

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

REPLY
@ray666

Hi, @debduh11

My situation is a little different. The chief difference is I have no pain, only this wobbly way of walking, wobblier at certain times of day (which I find weird). As I'm a long-time orthotics-wearer, I always assume I'm better off in my shoes with their orthotics (kinder to my ankles, knees, and hips) than barefoot (which I prefer, especially around the house). But either way––in shoes with their orthotics or barefoot without, I can still be darn wobbly. I guess you could say I'm looking for stability more than comfort. It seems an endless, quest no matter. 🙂

Ray (@ray666)

Jump to this post

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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