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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 never know how to explain the feeling in my feet. I have most of my problems at night time in bed I have to wear socks to bed and I hate that. I take tramadol and cymbalta and I don't know if I stopped taking him it would probably be worse but the best thing I found are these socks you can buy on Amazon that you can put them in the freezer and freeze them and put them on your feet at night and it is so comfortable. Sometimes I explain it like those thousands of rubber bands wrapped around my feet but I don't even know if that's right but I like your description of socks bunched up under your toes
If you see an acronym, just type it in the search bar on your phone with Google. The word will pop up, along with a description. Same with unfamiliar medical terms. Easy way to familiarize yourself with these new terms.
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1 ReactionI also have balance issues due to peripheral neuropathy. I've seen a couple neurologists and have had blood work and tests done (after months of waiting for appointments). And also feel dismissed by doctors. I've insisted on physical therapy to strengthen my legs. That hasn't started yet (3 weeks waiting list). It's been very frustrating. I feel like I have to take charge - eating well, exercises, and rest.
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1 ReactionI was given an RX for Gabapentin by a primary care doctor which I subsequently dismissed. She prescribed I take it 3x a day for lower extremity lymphedema, which I did. I was so spaced out, almost got into an accident driving, so I stopped it and consulted my cardiologist. He was shocked at 3x a day. He only prescribed it for those with trouble sleeping. Same reaction from my new primary care doctor. Be careful taking it during the day.
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2 ReactionsI agree with you Kathieb48 Balance is my main issue. I have been to PT 3-4 times. It did help, the key is when sessions are over, you must do exercise on your own. Sit to stand is in my opinion the best for stregthening legs, much harder when arms are crossed at chest. Heel to toe walking, balancing on one foot, I cant do any of those balance execises, but I keep trying. Neurologists to me are a waste of time, just keep moving and gabapentin for burning in feet and thighs help alot 300 mg a day. Yes, diet is important and taking charge is a must. Best Wishes to all with this mystery disease....
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1 ReactionMe too! And the lack of padding caused arthritis in multiple joints of my feet. The doctor told me to stay off my feet as much as possible, and I have to use a wheelchair to go any distance. But sitting all the time isn't healthy either. I don't know if more of my pain is from the lack of pads or the arthritis, but probably both. With mine, the entire foot hurts, but the bottoms are worse. Have you seen a Mayo podiatrist?
Same issues. I have purchased extra thick socks and wear them (In addition to compression stockings (love Everstride now) along with aetrex inserts my ortho foot dr suggested I ordered one of the strongest support- 2320 and ALWAYS have to wear shoes when I start the day.
I lose balance when turning, eyes seem to be a problem, cause seems to be an enlarged Cavernoma near brain stem--no help
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1 ReactionI have had different doctors tell me different reasons for not being able to walk barefoot. The pain is bad, like walking on rocks. I need to wear shoes all of the time. even when swimming,so annoying. One doctor said it was neuropathy the other said loss of padding, DUH!! Who do I believe? I wear PowerStep insoles recommended by podiatrist. They do help. I will try Aetrex next. I overpronate do they help with this? Thank You
Yes, the ones I ordered (2320) do help w overpronating. I also have to wear shoes while swimming and this year I will add inserts to them, if lucky enough to open the pool this year. You could have both loss of padding AND neuropathy. I have both, and polyneuropathy, which I am starting to realize was likely caused by heavy use of fluroquinolones over the years. Pretty sure they affected my tendons. I see so many people complain of being floxed by fluroquinolones (quiniolones like avelox and CIPRO which cause so much damage. Still alive, so thankful, but- no one ever told me about those risks, so I say, beware of ALL drugs and look for the Black Box Warnings on Everything~ Good luck to you! PRP doesn't help with loss of fat pads, per what I have been told.
Fat transfers do... but.. not many can afford that, especially since such short time of relief before has to be done again and again.