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.
Interested in more discussions like this? Go to the Neuropathy Support Group.
I fall all the time. Unlevel ground is not my friend. Nor, stairs. I have moved a bed downstairs to sleep in and only go upstairs when someone is home with me.
@ray666 I am no medical professional, but I experience the same and I'm in PT for balance, they have me doing leg strengthening exercises. My only guess is that because of the PN in lower extremities, it can affect the muscles as well…thus weakness.
I also have neuropathy and my legs are very weak. Especially in my quads. I was in a wheelchair but now can use a walker. I can’t walk far before needing to sit down and forget stairs. My lower legs involuntarily jump at night. I have no suggestions on how to help other than stretching. Your not alone.
My PN is a roller coaster, and when I have the spells you mention, I try hard to figure out if there was anything I can put my finger in that might have exacerbated it (diet? overuse from a recent strenuous event? fatigue/lack of proper sleep or rest? new medicine/temporary like an antibiotic?) I can’t pinpoint why hardly any of the time, but what comforts me is PT and home exercises that makes me feel good that I’m maintaining my strength all I can for these moments. My new home/HOA offers a stretch & tone class every week that is designed to be life style smart, simple exercises to help walk and work modestly on muscles we need for chores and basic activities. They even have an exercise to help prepare ourselves if we think we’re losing our balance and might fall, or if we are falling, how we might train our minds for the safest way to fall to reduce injury. I said it was a roller coaster for me; on days I’m feeling weak, my mind tells me to persevere because the good days come back.
Ed (@njed), Because weekly PT became too $$$, and because I'm limited (by my PN) in what I can do, I devote some attention every day to leg strengthening: stationary bike, stand-to-sit, stand climbing, etc. It's odd: my legs don't feel unusually weak (no problem stationary cycling); it's evenings when my legs feel weak-ish (my PN?). ––Ray (@ray666)
I do what I can to strengthen my legs, which is not nearly as much as I wish I could do. We are definitely not alone in this!
Since having to give up weekly PT and the local PT center (copays were just too, too much after several months of PT), I do an at-home online program, Better Balance for Life, out of Perth, Australia. BBL offers dozens of 1-hour videos, available 24/7, so I can do an hour's workout whenever I have the time. And I make the time! It's that important to me. ––Ray (@ray666)
Deb – the fact that your HOA offers these exercise programs is great and help to prepare people for possible falls and reduce injury is a suggestion for many of us with PN. What a great idea! I belong to an HOA in NC so I might see if they have something similar on the horizon as well. Keep moving!
Ed – We moved to an “Active” Community (55+) and with 300+ homes we have people just volunteering classes and clubs on what they have experience with, across the spectrum of activities/arts/hobbies. This class is perfect for even the healthy. For the prep for falling, this former PT also demonstrates how to get up, and many healthier folks get on the floor with him. I reserve that for an official/licensed setting, which I’ve asked for a couple of times over my 6 years. My knees won’t let me edge down to the floor, so unless I slip off my chair, a fall would be a hard drop. But once I’m helped to the floor, it’s a very interesting exercise to strategize and learn the best way to get up since knees don’t help me to even crawl. You said you’ve tripped/fallen – especially if we’re alone, we have to figure out the most resourceful way to get up! We just move from Charlotte area of NC, on lake Norman. We just weren’t able to find quite an Active enough community there so my husband could still have sports activities in his regimen.
@dbeshears1 – Deb – We are not in a 55 + community. Some are well over 55 and reside year-round. We are in a more resort area in the north part of the OBX. Yes, I have tripped or fallen a few times but not lately. I guess I'm being more careful and wiser and aware. When I've gone down, I have just yelled out to my wife…will you give me a hand? But what if you are alone. That is the importance of maintaining what we now have, and your HOA is on the ball. The falls can be a never-ending issue. I had a ladder collapse in 2013, still have issues after surgery. Sounds like you are in a great place! Like you, for me, exercise and keep moving is important.