Is loss of balance your primary complaint with neuropathy?

Posted by rollo8 @rollo8, Feb 9, 2025

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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Profile picture for ohkay2 @ohkay2

I had a neurologist that googled each symptom I told him about. This was my first visit when I was just realizing symptoms and I suspected it was neuropthy. I told him I already googled my symptoms and was hoping for testing and a professional diagnosis. 🙄🫩😄

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@ohkay2 😳😲

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Profile picture for orangerainbow @orangerainbow

@sue4 hi, I have been looking for a light weight rollator, course you tell me the brand, style and where you purchased. Thank you.

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@orangerainbow The medline rollator with seat and storage basket. Folds flat to place in trunk or back seat. $69 on Amazon and super easy to put together and sturdy.

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Profile picture for blessedsista24 @blessedsista24

@rollo8 I have vestibular hypofunction and neuropathy
I've found that converse shoes help with balance a little bit but are so flat .I feel as if im high stepping.

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@blessedsista24 I went to a Dick’s Sports store in our mall, and tried on several pairs of shoes and took good walks around the store. And, physical therapy helped so much. I do use a cane outside the home. Cane and a rollator on the ground flooring the house. Oddly, I don’t use any assist upstairs. Carpeted and narrow hallway and small rooms. Always something to touch correct balance. 😀

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Profile picture for NJ Ed @njed

@jakedduck1 On Amazon, I purchased several of these suction cup grab bars, about 10 inches long. Not sure if this has been mentioned before. They recently had a sale 2 for $20 and they work out well. I put several in the shower and each time, before I get in, I pull on them to make sure they did not become loose. I can't close my eyes in any safe fashion without losing my balance in or out of the shower. I have extras so when traveling, they go with me. Ed

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@njed
Ed. I have BIG problem with Balance. Also my Hands are Very Stiff. I have CIPN. ALSO I travel with those sticky handle. They work great. You just need test them on all different surfaces. Damn I just wish my Neuropathy would go away !! It’s been at least 2 1/2 years since I completed my Chemo.

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Profile picture for 3740 @3740

@njed
Ed. I have BIG problem with Balance. Also my Hands are Very Stiff. I have CIPN. ALSO I travel with those sticky handle. They work great. You just need test them on all different surfaces. Damn I just wish my Neuropathy would go away !! It’s been at least 2 1/2 years since I completed my Chemo.

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@3740 I hear you loud and clear and sorry to hear about your CIPN. We all have different causes for our PN yet many of us have similar effects as a result of the nerve damage. Agree, the balance is very problematic. I am idiopathic, going on 10 years, yet have some suspensions as to cause. I hope your PN improves over time. Stay well!

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Yes, the grab bars work well for the shower. I also am seeing a physical therapist for balance. I hope it wors. My neurologist wants me to have my hips checked by an orthopedist. No pain, just ideopathic neuropathy.

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Does anyone have a problem with driving

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Profile picture for marina88 @marina88

I have Sjogren's Disease, lupus, and RA and have many nerve related symptoms. I'm getting IV Ig that really helps my burning and numbness but not sure how much it's helping with other problems like balance and memory.
I also take ALA, B1, and B12.
The Siogren's Foundation has just published the first Clinical Guidelines for the Peripheral Nervous System.
Lots of useful information to share with your rheumatologist, neurologist, and other specialists.
I hadn't realized before that my fluctuating blood pressure is neurological. That information will probably be of interest to my cardiologist.
I'm going to check our those grab bars too. Thanks

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@marina88 Hello! How does one qualify to receive to IVIg? Is it only for autoimmune issues or can it also be used for peripheral neuropathy?

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Profile picture for 3740 @3740

@njed
Ed. I have BIG problem with Balance. Also my Hands are Very Stiff. I have CIPN. ALSO I travel with those sticky handle. They work great. You just need test them on all different surfaces. Damn I just wish my Neuropathy would go away !! It’s been at least 2 1/2 years since I completed my Chemo.

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@3740 my peripheral neuropathy causes pain, numbness and balance problems. I’ve had it 15 years. It’s idiopathic- they don’t know what caused it. I have learned to live with it, although I’ve fallen five times since last July. I didn’t break any bones, thank you Jesus, but I sprained my ankle, and it’s still not completely healed. I’m sorry you have PN - I know what You’re going through.

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Profile picture for sewsforfun @sewsforfun

@marina88 Hello! How does one qualify to receive to IVIg? Is it only for autoimmune issues or can it also be used for peripheral neuropathy?

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@sewsforfun
My peripheral neuropathy is caused by an autoimmune disease and my neurologist prescribed IV Ig. I’m not sure if it has to be autoimmune.
Maybe talk to whichever specialist diagnosed your PN and have them request it. It’s expensive, so not easy to get insurance to cover it.
Good luck

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