"Rubbery" Legs?

Hi, Ed (@njed) There's great wisdom in what you say: "I can't do everything, let me do what I can and make adjustments as needed along the way but not give in." I'll admit it was hard for me (still is, in some ways). I made it extra hard for me because, for most of my adult life, I've made it through each day by running from illusion to illusion –– or, as some might say, from delusion to delusion. I could go into how surviving this way impacted my relational and professional life, but what seems most beneficial here, in this forum, is how living a life of illusion (or delusion) straitjacketed my physical self, making adjusting to now having PN extra difficult. Two ways spring to mind: dancing myself as an outdoorsman, and believing I could perform on stage well into my dotage. PN shattered both those illusions/delusions! Today, I tottered from my car to the front door of the local supermarket; forget about scaling any 14,000' peaks this summer! Three years ago, I quit acting, not because I had to, but because, in my last show, I was spending all of my time "up there" in front of a paying audience not thinking about what my character was doing but only about me and not falling on my face –– more likely on my butt! Life gets to be one subtraction (of something you loved doing) after another. Adjusting to that –– that New Reality –– is an exercise in late-life maturity.

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?

Welcome to the Forum! I myself don't have any experience with either SCS or Lyrica but others do and posts pop up here often. I'm sure in the next day or two (maybe even later today) others will appear here with information that you'll find helpful. Once again, welcome! ––Ray (@ray666)

Very interesting....I am not always steady on my legs....and hate bringing a cane with me(too afraid of losing it!) but everyone is right...need to get off " my ego-high horse" and carry on to do what I want to keep on doing. Thank you everyone for the insight...things could be so much worse. Peace be with you.

Yes Ray I think that rubbery legs is a very good description, I have the same issues. To deal with it and to keep me safe I use a walking stick for very short distances and a rollator for longer distances . A practical solution to get me out and about and to keep me upright.

I'm still learning how to effectively use a walking stick, or cane. I'm still new to using one. Unfortunately, I don't have anyone within my circle of friends who uses one; if I did, I might have a tutor. One of the several mysteries of my neuropathy that has me scratching my head is whether I should or shouldn't, go about all day, or at least most of the day, in shoes where I have my orthotics. I've been wearing orthotics since the late 1980s (a long time!). But I also love going barefoot, or "sockfoot" around the house. The question I've not been able to answer is when I'm with, or without, the support of my orthotics, am I helping or hurting the health of my joints (ankles, knees, hips, lower back.) I wish you success in your pursuit of pain-free, rubbery-leg-free living! ––Ray (@ray666)

Ditto here.

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.

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.

You people never cease to amaze me. Who would have thought we should google proper ways to use walkers and canes? You just get one handed to you or buy them and it’s just assumed you know. My back and arms hurt enough using my walker, and I saw how hunchbacked I looked in a store window one day, that I’ve started standing straighter with my walker for posture but am afraid I’m going to trip on something since my eyes aren’t focused on the ground when I do that. I’m thankful when I don’t use either tool because then I’m not hurting my arms, but for shopping or distance I need one. I know that tonight I will be googling and you-tubing proper cane and walker use. It’s for my own long term good. Thanks to you both!