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Is loss of balance your primary complaint with neuropathy ?
Is the loss of balance your primary complaint with PN? And, fear of falling?
I have no pain in my feet. I do have numbness of primarily my toes and forefoot, and to a lesser degree of the whole foot and ankles. My feet have weird sensations of walking on mashed potatoes and sliding sideways; when I haven’t actually moved at all. Scary. I claw at the air thinking I am falling. My toes are curled and they feel stuck together. Carpeting really adds to the sliding sensation.
I am a 73y old woman and, up until the last year, I volunteered with an animal rescue and walked on uneven cement dog runs, cleaning enclosures and feeding and walking dogs. Eight years 2-3 hours, several times a week. Retired nurse and never had a sit down job. Could walk for hours in DC, just exploring.
Now I have to hold onto something when walking or I feel like I am falling. Not going out as often. Sliding sensation is mostly at home on LVP flooring and carpeting on stairs. I wear slipper socks at home. Referred to a neurologist and saw him after a 3 month wait. He has great reviews. At first he was encouraging, sure that I had an inherited condition, which I was sure I did not. 2nd visit, after lab work, he attributed it to SFN related to metabolic syndrome. He had just attended a conference. He then added ALA to the B12 prescribed by my primary. He didn’t even know if ALA was over the counter, so he sent an Rx to my pharmacy. Said he would see me in a year. I felt dismissed. Never even looked at my feet. I did research, and now take R-ALA 300 mg twice a day and B12 2000 mcg once a day. Not sure if I have been taking the supplements long enough to notice a difference. Research led me to toe spacers, toe exercises, Hoka Clifton shoes, floor based foot massager, open toe compression foot socks, and Bengay at night; Bengay for discomfort but not pain when going to bed. Actually, I bought the Hoka shoes before the numbness started, because my balance felt off. They are the only shoe I can wear now. Starting today, I am experimenting with a Zero Sunrise shoes as opposed to slipper socks in the house, to increase feeling in my feet. I have a purchased a Bob and Brad massage gun, but have not opened the box yet.
I am thinking of asking for a referral to a podiatrist to actually have my feet seen and suggestions for improving balance.
I welcome your experience and suggestions for what has worked for you.
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I know that feeling. So scary.
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3 Reactions@mrmacabre I have similar symptoms with sensory motor PN and quite often, I find myself stepping backwards to keep my balance. It is a weird feeling and when it happens, I've found that when I start to feel that sensation, if I lean forward, it might help in not having to step backwards. I think it adjusts your center of balance. I do use a cane when walking outside especially on uneven surfaces. Stay safe.
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5 ReactionsI am living proof that you can have SFN and no symptoms. Mine was proven by the biopsie of 0 nerves at my ankle and knee and 8 at my shoulder. My major complaint was my balance. Made it hard to diagnose. SFN cause by Sjogren's. (I have antibodies) If you have SFN long enough it effects your large fibers which can effect your balance. These are proprioreceptors (sp?) that tell your body where we are in space. They exit the spine at the lumbar spine and act on the feet. Two good neurologists and a good rheumatologist helped me figure it out. And don't give up!
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7 ReactionsWhile ?I was going through chemo my oncologist kept asking me every month do you have neuropathy and I said no so I thought I was fortunate. But then after chemo was all over I got neuropathy so is there anybody else who got neuropathy from chemo?
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1 Reaction@rollo8
Yes Balance issues are bad for me as well as well as I found out that I have vestibular hypofunction.
But I started wearing converse shoes and it helps me i have every color 😆.
But my sketchers are not working for me i haven't tried hokas yet. But i do use a staff to walk with outside of my home ,I can't use a cane tooo wobbly. Hope this helped i only for m d out 1 year ago and it's been life changing especially standing and the sheets at night
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1 ReactionYes, balance or lack of is my main issue. One dr. explained those with large fiber idiopathic neuropathy are not grounded, feet do not get signal from brain. Makes sense I guess, all I have to do is put a finger on anything, counter tops chair, even trash cans when hauling to street, I am fine. Hoka Bondis for me are the best.Best Wishes to all Hoping to find Hokas on sale Presidents Day coming!!
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3 ReactionsYes, it is life changing. I have bought a wood cane and a tripod, but I am so stubborn. Not ready yet.
I do have uncomfortable, not painful, sensations from the top sheet on my feet. Hard to explain. I have tried different socks, no socks, compression socks, feet out, feet under, just the top sheet, only a light fleece blanket, a weighted blanket. 🤔 This sensation is not as profound in the last 2 months. Is it the supplements, the exercises, the foot massager? I don’t know.
At this time, I wear loose socks that have to cover the cuff of my pj pants 🤔 and just a top sheet. And, Bengay on my feet and ankles, for that strange discomfort, not pain.
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3 Reactionswas wearing Altra and Sketchers for the wider toe box, for comfort. When I first felt like I was losing some balance, I started reading. The Hoka Clifton 9 and the Bondi 9 were the ones that were recommended most often for a woman my age for stability and balance while walking. Also the Hoka Arahi 7. Dick’s Sporting Goods only had the Clifton and the Arahi in stock. I walked around their store in both shoes, switching back and forth and liked the Clifton 9. I actually have two pairs, because I wanted an all black shoe too. I did not need to break them in. Now, my balance has gotten worse in just the last 4 months or so, and I cannot walk at all in the Altras or the Sketchers. I still like the Hoka Clifton. I walk very slowly until I can get a shopping cart in my hands. A cane would probably help, but I am not ready yet.
Today I wore the Zero brand natural shoe, Sunrise style, in the house, instead of socks with nonslip treads. Experimenting with training my feet to ‘feel’ the surface I am walking on. I did not have any weird sensations in my feet today, but will have to evaluate further to determine if they improve my balance.
I have tried insoles for a high arch but I don’t even notice my arches now that I have this balance problem. Every day I scroll and look for answers, and I want to hear what has worked for others in this group. I need to research stimulating insoles for use in my Hokas. It is a journey. If you bought your shoes in a store, you could go back and possibly compare with other models. Up until I bought the Hokas, I bought shoes online and returned them if they didn’t work out. But, getting in the store is a better way to compare. Dick’s was close to me and had the two models. But, I don’t believe they had anyone who could answer questions.
I hope you find some relief.
I have seen a discussion of chemo related neuropathy.
In that search bar, at the top of this support group, search chemo and neuropathy.
I have also seen a moderator ‘bump’ a conversation to another conversation that more closely answers a question.
Have had balance problems for as long as I have had nueropathy. For me I have worn braces that can be bought on line, these are worn inside your shoe. I don’t go anywhere without them. I also have drop foot which results in me stubbing my toe & tripping. I have found that Cadence Shoes which have a neoprene bottom which lets your foot slide instead of your toe grabbing. Hope this helps.
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