"Rubbery" Legs?

Posted by Ray Kemble @ray666, Apr 14, 2023

Hello, all!

I've been diagnosed with idiopathic polyneuropathy. For the longest time, I've been able to get around pretty well. It's only been recently that I've started to carry a can around with me. Most often indoors I don't need it. What has me concerned are my legs: they seem to be getting weaker, especially toward evening. I tell people it's a "rubbery" feeling like I can really trust my legs. My knees especially feel untrustworthy. Has anyone else experienced this? Have you ever come up with ways to un-rubberize your legs? I've not fallen, at least not yet, but going around, especially outdoors, I'm always on guard.

Ray (@ray666)

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@dbeshears1 - You are funny!! My cane - so, on my 50th birthday, 23 years ago, my nephew gave me a wood cane.,,,getting old, all that stuff. Did not need it then so I hung it in the coat closet. Never forget, he said to me on my 50th..."someday you'll need it". True, and as it turned out, he was right. That someday came 20 years later at 70. I dug it out of the closet and said to myself I wonder how I should use this?? Walking sticks are not as easy for me.

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@njed

Figured I throw my two cents in here. When I first started using a cane, I figured there had to be the right way and wrong way. So, I decided to google it and sure enough, there it was. Of course, I was doing it the wrong way. My daughter then got me walking sticks. My coordination is not 100%, never has been but I do use them time to time. Let's see, left stick and this foot...hmmm.

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What I've yet to master –– not that I can say honestly that I've mastered anything about using a cane (LOL) –– are steps. The YouTube tutorials make it look oh so easy. Oh, yeah? An example of what a klutz I am when it comes to using a cane to negotiate steps is the two teeny-tiny steps leading out of my dentist's office. Before Covid, patients came & went by the front door (no steps!); since Covid, patients are asked to use the back door, which leads to those two teeny-tiny steps before your shoes are on the sidewalk. I refuse to go out the back door. I've mentioned my balance problems. The reaction I get is "Oh? So? There are only two steps." Just so I can go out the front door, I've taken to making up the lamest of excuses: "I left my cell phone in the waiting room," "My chauffeur will be waiting for me out front," yadda yadda.

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@njed

@dbeshears1 - You are funny!! My cane - so, on my 50th birthday, 23 years ago, my nephew gave me a wood cane.,,,getting old, all that stuff. Did not need it then so I hung it in the coat closet. Never forget, he said to me on my 50th..."someday you'll need it". True, and as it turned out, he was right. That someday came 20 years later at 70. I dug it out of the closet and said to myself I wonder how I should use this?? Walking sticks are not as easy for me.

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I'm guessing when someone says "walking sticks," they are mean the same as "trekking poles." I have my cane, an adjustable, metal cane with a curved handle that I bought at a local pharmacy for surprisingly few dollars. I set the cane at what seems a comfortable 36" length. I also have two trekking poles, which I've owned for many years but rarely used. Since PN, I've tried a little gravel path walking with the poles; but, now that also use my cane, set to 36", I discovered that I'd had my trekking poles set to much too long a length. No wonder after only a short walk on a gravel path my shoulders would ache so much! LOL

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@geoffv

Ray, going barefoot inside your home is said to be very good for us pn people. There are a lot of nerve ends in our feet so it is good for them. However your orthotics makes the story different, you need to talk to your podiatrist.

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Hi, Geoff. That was just the nudge I needed! I had been thinking about talking to my podiatrist about PN and orthotics vs. barefoot –– but so far "thinking about it" is as far as I've gone. Your mentioning talking to my podiatrist has me determined to phone him this morning. Thank you! ––Ray (@ray666)

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@njed

@dbeshears1 - You are funny!! My cane - so, on my 50th birthday, 23 years ago, my nephew gave me a wood cane.,,,getting old, all that stuff. Did not need it then so I hung it in the coat closet. Never forget, he said to me on my 50th..."someday you'll need it". True, and as it turned out, he was right. That someday came 20 years later at 70. I dug it out of the closet and said to myself I wonder how I should use this?? Walking sticks are not as easy for me.

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Me too: I used to have a couple of beautiful wood canes lying about, never used as canes, just propped up here and there as decorative pieces. When I first realized I might actually have to use a cane, thanks to my PN, I set my heart on finding a solid silver wolf's-head cane like the one Claude Raines carried in the classic 1941 Wolf Man flick –– not that I'm expecting to be attacked by a werewolf anytime soon.

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@ray666

What I've yet to master –– not that I can say honestly that I've mastered anything about using a cane (LOL) –– are steps. The YouTube tutorials make it look oh so easy. Oh, yeah? An example of what a klutz I am when it comes to using a cane to negotiate steps is the two teeny-tiny steps leading out of my dentist's office. Before Covid, patients came & went by the front door (no steps!); since Covid, patients are asked to use the back door, which leads to those two teeny-tiny steps before your shoes are on the sidewalk. I refuse to go out the back door. I've mentioned my balance problems. The reaction I get is "Oh? So? There are only two steps." Just so I can go out the front door, I've taken to making up the lamest of excuses: "I left my cell phone in the waiting room," "My chauffeur will be waiting for me out front," yadda yadda.

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I concur Ray. I totally avoid steps when possible. I haven’t been in my backyard for ages. There is a deck off my back door with 8 steps going down to the yard. It’s too dangerous to maneuver. I have trouble with the 2 inch drop down to my porch off the front door. To leave my house I need a transport, which can be very expensive. So far I’ve been able to manage alone, but fear that day may be coming. I tried for many years to find out what is wrong going from doctor to doctor, having test after test, bloodwork after bloodwork to no avail until December. At this point, I am well past the cane stage and need my Rollator all the time and the wheelchair on occasion. I was also extremely discouraged when I was searching Lyrica and Cymbalta and discovered there are some serious side effects and there may be a class action lawsuit starting.

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@ssjohns

I concur Ray. I totally avoid steps when possible. I haven’t been in my backyard for ages. There is a deck off my back door with 8 steps going down to the yard. It’s too dangerous to maneuver. I have trouble with the 2 inch drop down to my porch off the front door. To leave my house I need a transport, which can be very expensive. So far I’ve been able to manage alone, but fear that day may be coming. I tried for many years to find out what is wrong going from doctor to doctor, having test after test, bloodwork after bloodwork to no avail until December. At this point, I am well past the cane stage and need my Rollator all the time and the wheelchair on occasion. I was also extremely discouraged when I was searching Lyrica and Cymbalta and discovered there are some serious side effects and there may be a class action lawsuit starting.

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It is so easy to think it is all so very discouraging. Even though I've done the crazymaking go-around of different doctors and different rests (perhaps not nearly as many as others have), I'm still refusing to give up. If I can only manage to slow down the progression of my PN, I'll be a happy camper. Steps without handrails have been my bugaboo from the very start. In fact, my dread of "naked" steps was the reason I quit acting. On the evening of our first rehearsal (three years ago), I took the set designer aside and asked if he'd make sure that any steps that he might be planning would have handrails. That night driving home, I thought to myself, "That's it, Ray! Never before have you asked for an accommodation to be made in a set. It's time to retire!"

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@ray666 - Yes, you are right, trekking poles is what I should have called them, not walking sticks. The trekking poles I have can be adjusted to desired height as well. Weather improving, I think I'll give them a try. Anything to keep moving.

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"Anything to keep moving" is the name of the game! I've two excuses for not going out with my poles this afternoon. Excuse #1 is we're snow mixed with rain bearing down on us. Excuse #2 is my partner is out of town, and she's my trekking sidekick: a "must" when your legs are as wobbly as mine.

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@ssjohns

Hello. I am a new member and wanted to comment on the “rubbery legs syndrome.” I, too am suffering this symptom and having difficulty walking without a Rollator or rolling myself in my wheelchair. Sometimes I feel like I have the sensation of walking on stilts. I was only diagnosed in December with Peripheral since three neuropathy. Still not sure of the exact cause but I have had a back injury and herniated disc surgery, in addition, I have been a lifelong statin user. Which I’m told could be the culprit.

I am a retired, widow, and living alone, which makes it difficult, because I have to be extremely careful not to fall. I have had at least six falls in the past. My other symptoms are dizziness, instability, and blurred vision. I do not drive anymore and have literally become a prisoner in my home. I will hire a transport to go to the doctor and have everything else delivered.

I was wondering if anyone has had the spinal cord stimulator (SCS) implanted, and if you are having any success and pain relief. I am seriously considering this option. I have also been given the option to take the generic of Lyrica but after reading all of the side effects I’m not really sure. Does anyone else take this drug and doesn’t work?

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I take the generic Gabapentin and a month ago had my left knee replaced. I take it with a pain killer and it helps and gives me relief. I have had a morphine pump since 2012. It gives me a life, otherwise I'd be on a couch horizontal. After 20 years and seven implants, my main goal is mobility. As I am sure you can imagine, I've done it all, so the choices left are few. Living in pain is a losing game, so now I play to win that means seriously considering the choices offered to you. Think of this as a journey. To keep going you have to go forward and don't give up. I wish you success and hope you find relief,

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