Is loss of balance your primary complaint with neuropathy ?

Posted by rollo8 @rollo8, Feb 9 1:07pm

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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Thanks for sharing. I agree with doing exercise daily! I've noticed if I miss a day, my balance is way off. I never thought to do excercise for the eyes and neck to help with balance. Will incorporate into my routine.

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Gabapentin just covers up the pain and side effects. I personally did not like it because it made me feel like I was loosing my mind. It causes forgetfulness and for me I can’t urinate so it affects my kidneys also.

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Hello, I am 74 and was told my neuropathy was radiating from my back. Test show stenosis, scoliosis and spondylitis. I’ve had progressive deterioration for yrs. I can deal with the numbness, pins and needles but the imbalance is terrible. I do use a cane for any distance walking. I too, use toe spacers and wear zero drop, barefoot shoes. Before, I wore Hokas but any shoe with cushioning makes me more imbalanced. I feel like I’m falling off of them. This whole thing is quite the challenge. Best wishes to all.

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@kathyv66

I only have numbness, no pain. I wear barefoot shoes inside and outside and find they help quite a bit. I also practice standing on one foot while I am waiting for my coffee to brew in the morning and take yoga classes 2-3 times a week (which also include balancing poses). Having said that, have you been checked for inner ear issues?

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My feet are numb. My left foot doesn’t know what kind of surface I am standing on.
Truly wish it was the ear.
I am a retired nurse. I have moved on to acceptance and doing all I can to maintain what feeling I have in my feet, and keeping my legs strong. I am taking supplements that may not help, but will not hurt. The prescription med offered is of no use for numbness.
Thank you for your suggestions. At some point, soon I hope, I’ll return to the senior center and look at the classes offered. They have a great program. And, a couple of machines in their gym can help with knee and leg strength.

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@artemis1886

Gabapentin just covers up the pain and side effects. I personally did not like it because it made me feel like I was loosing my mind. It causes forgetfulness and for me I can’t urinate so it affects my kidneys also.

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Yes. I have read so many complaints about gabapentin. From many forums. And, doctors keep offering it for numbness. Why?
I think all neurologists should be reading these forums.

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@scain

Yes after suffering with undiagnosed IC I was finally referred by my urologist to the pain management clinic who prescribed to lyrica which is pregabalin. I always research any drugs that are prescribed and I am fully aware of the dependency issues. That said I refuse to have excruciating pain that keeps me in bed and nonfunctional. Since starting lyrica 2 yrs. Ago I have had no pain and can now function. Everyone must decide for themselves. I have never found anything noble in suffering when there are options available.

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I have read lyrica may help with pain. But, no prescription drug eliminates numbness, even temporarily.

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@rollo8

My feet are numb. My left foot doesn’t know what kind of surface I am standing on.
Truly wish it was the ear.
I am a retired nurse. I have moved on to acceptance and doing all I can to maintain what feeling I have in my feet, and keeping my legs strong. I am taking supplements that may not help, but will not hurt. The prescription med offered is of no use for numbness.
Thank you for your suggestions. At some point, soon I hope, I’ll return to the senior center and look at the classes offered. They have a great program. And, a couple of machines in their gym can help with knee and leg strength.

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oh I didn't mean to suggest you don't have neuropathy - just wondered if you might also have something else happening that causes the sliding feeling. I have multiple things going on so I find it difficult to separate and differentiate what causes what.

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@rollo8

Yes. I have read so many complaints about gabapentin. From many forums. And, doctors keep offering it for numbness. Why?
I think all neurologists should be reading these forums.

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Gabapentin helps to dull the pain pain in my feet. My dosage has steadily increased over the years, and I'm currently taking 3600mg a day, which is the maximum dosage my doctor will prescribe to anyone.
Where we go from here, I have no idea.

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Since lyrica is pregabalin perhaps you might want to investigate with your doctor. It's not for everyone but it is at least worth talking about. And I agree. It helps with the pain and discomfort but there is no drug to my knowledge that helps with numbness. More medical research is needed to understand PN!

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