Living with Neuropathy - Welcome to the group

Hello, @cariloo,
I've not seen anyone on Connect say that they are especially fearful of turning or changing direction (resulting in a fall), but this is exactly my greatest fear, also. It happened last month as I was putting away groceries and decided something belonged in a different place. Thanking God that it didn't result in a break or even a bruise but it sure alerted me to how readily this can happen and how serious the consequences can be.
I have experimented over the last 30 years with many remedies (hopeful) for my PN, from a menthol spray to
Class 4 red light therapy to PT, and currently am finding the most complete relief in a combination of Pregabalin, Tramadol, a recumbent bike, my wonderful chiropractor of 25 years, and an investment in a BEMER system, purchased through my physical therapist. It's too complicated to explain in a post, so better to just google it and get the facts from the manufacturer. Expensive? Yes. Works? Yes. Helps me to stay independent, living alone (with my dog!) and in control of pain, and more content than I deserve. I'm 77 and female and live in the midwest with all four seasons ~ and some in excessive ranges.
As for socks and footwear, what works best for me are the running shoes with lots of support and basically no flexibility. They keep my feet flat on the ground - you might say well grounded. I buy a full size larger than what they fit me for in the store. For me, the best socks are thin and not at all binding or tight. You didn't mention if your feet feel cold or if you live where it is cold part of the year. For indoor shoes, I love allbirds wool loungers and wool mules. No socks needed! Where I live they can only be purchased online.
I wish you all the best as you navigate the therapies that work best for you.
Barb

Hello, @cariloo,
I've not seen anyone on Connect say that they are especially fearful of turning or changing direction (resulting in a fall), but this is exactly my greatest fear, also. It happened last month as I was putting away groceries and decided something belonged in a different place. Thanking God that it didn't result in a break or even a bruise but it sure alerted me to how readily this can happen and how serious the consequences can be.
I have experimented over the last 30 years with many remedies (hopeful) for my PN, from a menthol spray to
Class 4 red light therapy to PT, and currently am finding the most complete relief in a combination of Pregabalin, Tramadol, a recumbent bike, my wonderful chiropractor of 25 years, and an investment in a BEMER system, purchased through my physical therapist. It's too complicated to explain in a post, so better to just google it and get the facts from the manufacturer. Expensive? Yes. Works? Yes. Helps me to stay independent, living alone (with my dog!) and in control of pain, and more content than I deserve. I'm 77 and female and live in the midwest with all four seasons ~ and some in excessive ranges.
As for socks and footwear, what works best for me are the running shoes with lots of support and basically no flexibility. They keep my feet flat on the ground - you might say well grounded. I buy a full size larger than what they fit me for in the store. For me, the best socks are thin and not at all binding or tight. You didn't mention if your feet feel cold or if you live where it is cold part of the year. For indoor shoes, I love allbirds wool loungers and wool mules. No socks needed! Where I live they can only be purchased online.
I wish you all the best as you navigate the therapies that work best for you.
Barb

@matk
I'm sorry to hear that you have neuropathy.
If I were you, I wouldn't fear what may or may not happen in the future. 99% of the things you worry about never happen and the other one percent is going to happen regardless so what's the point in worrying about it.
I developed neuropathy 40 years ago with all the horrible pain & balance issues. Many years later the pain went away replaced by numbness. The numbness went from my feet just past my waist causing ED, bladder & bowel complications. The numbness eventually regressed and is mild now and mostly affects my feet with some in my ankles and lower legs. I do have weakness in my legs. It's difficult to tell how much of my balance problems are related to neuropathy and how much is due to my seizures and seizure medications.
Take care,
Jake

@scain
I often fall to the side. One day when using an aluminum U-shaped type of walker I fell to my right. I was walking through my living room and all of a sudden I started to fall to my right. So instinctively, I put out my right foot sideways to regain my balance, but the walker prevented me from moving my right foot that way. I ended up falling hitting my head on a glass table and getting a bunch of staples in my head.
So you might want to be aware if any device would prevent you from regaining your balance.
If your looking for the least weight carbon fiber would probably be your best choice, but it is more expensive than aluminum.
I don't like any walking aids but after my experience I'd use a cane if I had to rely on something.
Be safe,
Jake

Hi, Barb

It surprised me when I read what you said: "I've not seen anyone on Connect say that they are especially fearful of turning or changing direction (resulting in a fall) … " ––surprised me only because, as my balance has improved, turning or a distraction from either one side or the other has remained one of my greatest concerns. A daily example of this concern is going down the walk to fetch our morning newspaper. Most often I'll find the newspaper lying in rhe middle of the sidewalk. Before I dare bend to pick it up, I'll always look carefully left and right, concerned that a pedestrian may be approaching. With my unreliable balance, the last thing I need is to be unaware and suddenly hear an approaching neighbor call out "Good morning!" or or the patter, pat, pat of an onrushing jogger. Just another of PN's delights!

Cheers!
Ray (@ray666)

Hi Barb, I also meant to add that if you have been living with PN for 30 yrs., you might be the resident person to run things by before investing or wasting time with different stuff to help with this problem. I have just been officially diagnosed with PN. I say that with a grain of salt as I began having mobility problems, I googled the symptoms and diagnosed myself. That is also how I found this site. Anyway, I also take into account that just because we all have PN, it doesn't mean that we all have the same symptoms or that any one thing will be helpful. That said, I also take pregabalin for a different problem, but when I finally met with the neurologist after a 6 month wait, she said that that drug is the most helpful for nerve damage pain, etc. However, I have noticed in the past week or so that the pins and needles are starting to really act up at night and they prevent me from getting a good night sleep. Is that why you are taking tramadol too? As I said, being new to this game, I am just trying to figure out what is helpful and not so helpful for the majority of PN sufferers. I too, am concerned about living independently as long as possible. My older sister (18 mos.) said that when we finally have to go to assisted living, as a group of baby boomers, we are not going to want to listen to the "canned music" that they play. Of course, she was joking. But with that in mind, I just put together my playlist on Spotify so that I can at least listen to music that is my choice. Trying to control the things in our power that we can control I guess. Thanks everyone for sharing. I think that that one thing might make us different from our depression era parents who seemed as a group to go to the grave with their problems. Susan

Hi, Susan (@scain),
I appreciate your trust in the length of time I've had PN, but that really has nothing to do with what will or won't work for you. Bummer, I know. Yes, the Tramadol is for pain, along with Pregabalin ~ but I'm not sure I can compartmentalize which does exactly what.
Actually, I was not medically diagnosed until an EMG in 2021. And I wouldn't have known to have that test had it not been ordered by the orthopedic surgeon who operated on my back a month later. Knowing what I do now, I am sure that the surgery was responsible for worsening the neuropathy that I'd had all those years but which had gone undiagnosed (and therefore untreated except for an over-the-counter eucaliptus/menthol spray for the burning), and that my surgeon was smart enough to have a record of the diagnosis before performing the procedure.
From what I have been able to discern from the comments here on Connect, the EMG would tell you, among other things, whether yours is Short Fiber or Long Fiber. It seems to make a difference as to which treatments prove more effective.
I have noticed that over the years, the symptoms that present themselves seem to cycle, or come and go. Many years ago one thing that drove me crazy was an itching so deep inside my heels that nothing could relieve it. Then for many years that seemed to go away and be replaced by terrible pain that kept me up almost all night. Now, with pain almost completely under control, the itching has reappeared occasionally, and mobility and balance are daily challenges. Go figure!
I wish you all good things as you seek information and answers! It's not always easy or straight-forward.
Barb

Thanks for the info. I do have an emg and NCS tests scheduled for next week. Also blood work to do. I think the only thing that worried me after my initial appointment with the neurologist is that she said when I was in my way out of the office to tell her asst. to make the follow up appt. for 6 mos! I felt that after these tests were completed we would have an appt. To talk about them. I mean how helpful can these tests be to her at that late date. I mean it is me who needs some relief. Is that she doesn't have any relief to give me or that the tests won't give her any new info. I find this whole diagnosis as confusing and frustrating as many if you do who write in. I did find the names of neurologists in Boston who specialize in neuropathy and wonder if enough people who write in here had better experiences with seeing them. If course as a lot of us have mobility issues including me it will involve me getting help with parking walking some distance etc. Is it worth it if no one has answers. It is sort of a mess at best. I guess u will get the tests done as asked and give her a chance to respond and if not I will probably see the specialist. Well I guess I am just thinking out loud at this point. It's late and I Am up with annoying pins and needles in my foot keeping me awake. Thanks again. Susan