Does anyone find that a type of shoe helps your foot neuropathy?

Posted by lorirenee1 @lorirenee1, Mar 25, 2019

I am on a constant quest for shoes that don't kill my feet due to the neuropathy. I find that Spencos and Wolky shoes seem the best. Are there any other suggestions? Shoes can be just crippling for me. Horrid.

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@dbeshears1

@bluesky222 - Just another example of how unsure Neurologists are in understanding causes and symptoms of PN. I have shared just about possible idea I’ve had with the Neurologists I’ve had from the different states I’ve lived in over the 7 years I’ve had this idiopathic thing. Anything from chemical exposures throughout my career to possible poor drinking water in vacation rentals to eating a lot of seafood. I even asked to be tested for arsenic poisoning since there were no good explanations. When I have suggested any types of my beer/wine consumption over the years, they’ve ruled it out because I did NOT have gradual or worsening symptoms over a period of time. They said the numbness & tingling usually presented awhile then would gradually get worse to varying degrees as time goes on. I guess also because blood suggested no vitamin or nutritional deficiencies that usually go with extraordinary alcohol use, and probably other symptoms. They also are unable to know for sure if an infection I had at the time my PN hit me had anything to do with it. My point is that there are a only a few causes of PN that doctors seem to be sure about in diagnosing, and for the other causes, doctors seem to be grasping at straws like we are. I finally got to @njed state of focusing on how we can improve or maintain the hand we’ve been dealt vs wasting valuable energy on trying to figure it out ourselves since trained Neurologists aren’t able to even get consensus on what we might think are the simplest things. They seem to agree that once you know you have PN, that alcohol won’t help it, so I’ve chosen to avoid it altogether now. I can’t say it helped anything since it had been awhile since my PN hit that I had a glass, but don’t want to test to see if having one now might make me worse. I’m going with Ed’s idea that we probably got it from chasing mosquito spraying trucks in our youth 🙂

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" I’m going with Ed’s idea that we probably got it from chasing mosquito spraying trucks in our youth 🙂"

Is that what causes it? I didn't know that. But what about me? I grew up in the Bronx. I don't recall us ever spraying for mosquitos. I wonder if it could have been all the pepperoni pizza. Or a boyhood of jostling on the NY subway? That could have been it, too. I think I'll call my neurologist and ask: Was it the pizza or the subway? What do you think, Doc? What's your best guess? 🙂 (Debbie, thanks for the midday laugh!)

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@njed
Hi Ed,
Did you ever take Dilantin, Phenobarbital, Topamax, gabapentin, lacosamide, Keppra, Carbamazepine, or Depakote for seizures?
Jake

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I feel your pain. My closet is running over with shoes that I can't wear. Crocs seem to be acceptable. Hush puppies are too. Other than those, I haven't found any shoe that I can wear for any great length of time. I can barely stand anything touching my feet, tops, bottoms and toes! My feet without shoes, just loose socks, are freezing all of the time! I often wonder, "Why me?" 😒

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I have several pair of Merrill jungle moc shoes. Easy on/easy off and VERY comfortable.

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@jakedduck1 -- Hi Leonard - interesting question - yes, I was prescribed phenobarb and dilantin together in 1972 and in 1986, the phenobarb was eliminated and put only on dilantin, the dilantin was then increased to 600 mg daily so I've been on that dosage since 1986. These are the only 2 meds that I have ever taken for seizures. I've done well since 1986 strictly on dilantin...it is holding me. I've often wondered if the neurological disorder of then grand mal could have been the trigger for the PN I'm now experiencing. The neuro docs including Mayo say no....but....?? I did try Gaba but that made me nasty and short tempered....primary doc prescribed it for PN. Went off of it in 2 weeks, had to before my wife threw me out the front door!! LOL - Ed

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@njed
Hi Ed,
You took a hefty dose of Dilantin. I took 600 mg too for a while.
Several doctors claim my Dilantin & Phenobarbital is responsible for my Neuropathy.
I also took Depakote, Zarontin & Mysoline along with the Dilantin & Phenob at the same time. I believe it’s a reasonable conclusion that those medications caused my neuropathy. I took those drugs for 20 years. The length of time probably had something to do with it. If the medication alone didn’t cause it, then I believe my numerous episodes of Status Epilepticus may have been the sole cause or at least were major contributing factors.
Did your doctors at Mayo ever say why they didn't believe your seizure medications didn’t have anything to do with your neuropathy?
Take care Ed,
Jake

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@jakedduck1 - Jake, when I went to Mayo in Rochester in 2020, I had been on dilantin for about 48 years and at that point, the opinion was that if dilantin was the cause, the PN would have started up long before 2016 which is when I was officially diagnosed with PN. However, I did explain that in 2008, I started with slight numbness on several toes left foot, then progressed from that point which was 36 years after starting on dilantin. Yet, most neuro docs feel dialntin isn't the cause in my case and no doubt, their thinking is the number of years that past before numbness began. Jake, problem is simple....no test exists to prove it is or isn't the cause. So, we can only speculate ... and wonder. Be well.

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@njed
Yes your right. But neuropathy use has been proven to happen after short and long term dilantin use. I don’t think anyone will ever know if or when for sure it will occur, doctors included. But long Tonic Chronic seizures are known to damage neurons that can cause neuropathy so I’m fairly confident in my diagnosis. although I suppose my three shoulder surgeries back in the 70s could have played a part. But like seizures, we’ll never know for sure, why.
Take care,
Jake

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@debduh11

I feel your pain. My closet is running over with shoes that I can't wear. Crocs seem to be acceptable. Hush puppies are too. Other than those, I haven't found any shoe that I can wear for any great length of time. I can barely stand anything touching my feet, tops, bottoms and toes! My feet without shoes, just loose socks, are freezing all of the time! I often wonder, "Why me?" 😒

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Same. Just ditched all my cool shoes from my closet and replaced with Birkenstocks and crocs slip-ons. I just came to terms with I gotta do what I gotta do. Got any other shoe recommendations??

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I have the same problem. I can't wear any shoes and if the socks aren't soft enough I can't them either. I been wearing my sandals that I got from Orthofeet. Now winter is approaching I have a problem!!!!! Neuropathy overload or cold feet. Which shall it be?????

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