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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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Sorry, it stands for Small Fiber Neuropathy which are very small nerves (2 or so millimeters) that are part of our autonomic nervous system. We have them everywhere. They are tested by 3 punch biopsies in the skin and actualy counted.
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2 ReactionsThe two drugs are given by infusion and a PCP may be able to order it. Try reading up on it first.
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1 ReactionDear @rollo8
xxxx FALLING DOWN? xxxx
Falling down? I’m there. 3 years ago I fell down, accidently (sp?). That hit my rear-ends and started from my rear-ends to my feet.
xxxxx PAINS GONE, BUT xxxxx
Now, the pain is gone, but my right lower leg is little feeling that cause of falling down way more than before. I use a helmet ow when I walk farther outside or inside my music-room with my guitars & amps… I have many these things that’s to easy of falling down.. I did this a few weeks ago that hit my back. Know I have a helmet.
xxxxx ME, 12 YEARS AGO xxxxx
Hey, you are young - we are alive; I’m close to a 69 years-young. I lost since 2012 I had a bicycle accident and hit my top head. I lost 80% of my brain-memory-ability and now a TBI member of brain-injury “friends”.
xxxxx BE CAREFUL xxxxx
Well, be careful and using your need of safety of your brain,
Greg D. @greg1956
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2 ReactionsDear @rollo8
I forgot… my safety, when going outside places like my church, restaurants, stores, and others, I use and take my
4 ROLLER that allows my safety with NO falling down. I hate it, but I need it. That was my falling down 3 years ago in my butts. This is not my accident 12 years ago.
Thx,
Greg D. @greg1956
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1 ReactionYes. I agree. Young still and I need to give the cane a chance, because safety is my real goal. Thank you. 🙏🏻❤️
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1 ReactionYes. The webbed toes and just weird sensations in my feet and ankles. Bother me most at night. No pain. Or maybe I don’t consider it as pain. But, I feel that both contribute to my problem with balance. I am still early in the research and experimenting stage. I decided, last night, that I will start using a cane. I really don’t want to fall. And,
I really don’t think I have a
diagnosis ; it is a guess based on the last seminar my neurologist attended. For real. 😣
Toe spacers do help with the webbed or claw or hammer toes. The ones I use are hard to get on and can only wear for 30 minutes or so. A bit tight. But, I do feel a difference. I have ordered toe separator socks that can be wore at night and said to be more comfortable.
Unfortunately, I don't think there are any other options. I've had an EMG test done on 3 separate occasions by 3 different neurologists in the past few years. It's not a fun procedure, but it lets them see where the nerve damage is.
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1 ReactionAFO = ankle-foot orthosis, a brace for foot & ankle. Sorry for the confusion. I got them on Amazon.
Bob
Hello…I could be wrong but I think the medications she is taking are given if your neuropathy is caused by an autoimmune disorder .
Steve
I will start by apologizing that I don't have any answers or even any options for alleviating any of the problems associated with peripheral neuropathy but I will say that I have learned more about my balance and associated lack of feelings on the soles of my feet, etc., etc. here then I have in any doctor's offices. I do recommend a website found here "The Foundation for Peripheral Neuropathy" where you can enter your state and find a list of doctors that specialize in this problem. Unfortunately most of the doctors listed are in Boston which is about a 30 min. drive for me. More than the distance, I worry about icy walkways, etc. My husband still works full time and currently has his own health issues (attending cardio rehab) that means he attends 2 hour sessions 3 times a week so that he is already taking time off from work. I am hesitant in asking him to take me to see one of these doctors. However, just reading more information on this site told me that diabetes is one of the leading cause for peripheral neuropathy. Being dismissed when at a doctor's office is so demeaning and just a waste of time, I almost want to cancel my appointment with a local neurologist (the appointment that I have waited 6 mos. to see) but I will go and understand if they have no helpful information about PN. At least now I know that yes it is a "thing" and although nor well understood in the medical field, I am not alone in having these problems. I worry about ending up in a wheelchair and living in our house that is not suited for that. I have begun the journey and I will continue to read and post here so that anything that I find out about might be helpful to all of you. I will say again..."do not go quietly into the night" and understand that you are no alone and what is going on with our feet and legs is not in our heads!!! Thank you all again.
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