Living with Neuropathy - Welcome to the group

Tomcat from Gville, Fla, 88 years young,some neuropathy in hands & feet, EMG confirmed, probably wait til death to see neurologist, very scarce nationwide,don’t know why with so many suffering! So far mine has little pain but all other symptoms! This website is a Godsend! Also constant Prayers for all.

@tomcatrv4 Thank you for your uplifting message. I am ten years behind you, but feel a lot like you right now... neuropathy, burning, tingling, and pain. Fortunately, I can sleep fairly well. I will add to all those who need prayer.

Hi
My name is Dorothy. I haven’t been told a kind of neuropathy I have. I am 80 years old. It is very bad and I use a walker. I have been given gabapentin but found it not helpful. I am just browsing to see what is out there.

I am 90 and have idiopathic peripheral neuropathy. No pain, but numbness and instability. I tried the National Neuropathy Center, very dissatisfied and no help. I do acupuncture, physical therapy, and currently trying dextrose injections. All do not seem to have helped. I am a retired veterinarian so have a medical background. I have kind of accepted my aging and there ma not be a cure. I use a cane, drive my car, so, count my blessings. Any thoughts ?Thanks, Richard

@richardrodgers Hello, Richard. Your symptoms sound very much like mine. I'm 81. I have idiopathic large-fiber polyneuropathy, so no pain, only balance issues. I do PT, Wednesdays with an in-home therapist, and on my own other days. I also do balance exercise, too, also on my own. Like you, I'm still managing with a cane, and still driving. As I tell my friends, oddly enough I'm totally at ease when I'm driving; it's when I reach my destination, climb out out of the driver's seat and have to walk about––that's my Uh-oh! time. Although I haven't experienced a dramatic worsening of my balance, I have noticed recently (the last few months) what I'm calling "spells," hour-long episodes of poorer than usual balance. These "spells" have me wondering if my balance is, in fact, getting worse. // My very best wishes to you, Richard! –Ray

I have posted this somewhere else in the maize of groups on here, but I can identify with what you all are experiencing. I am 80 years old and have had neuropathy in both feet for about 5 years. Recently I found an electrical stimulation machine that seems to be helping. I bought it on Amazon for around $100. It is simply listed as EMS and Tens foot stimulation. It's round, white with black footprints on it. It has different modes and different levels of stimulation. I have to turn mine up to 18 or 20 to really feel it. Don't know if it will help anyone but thought I would share. I use it twice a day for 30 min while I watch TV. It is the first thing that has helped me at all. I still am not able to help the burning sensation in my ankles, but maybe someday.

I'm 86 and have had no feelings in my feet for about 30 years. Started with the burning sensation when standing, finally subsided to no sensations whatsoever.
Now, about a year ago my fingers started tingling and progressed into now having no feelings.
Anyone out there with the same symptoms and a possible cure besides the Scams on Internet?

@richardrodgers
Hi Richard
I have both severe idiopathic large & small fibre neuropathy so experience a constant degree of pain, numbness, burning etc etc. Have had this for nearly 20 years (I'm 67) .
Have tried everything from opioids, Gabapentin, Lyrica, acupuncture, Chinese herbs, supplements, TENS machine, vibration pads, Noom pads, creams, gels, oils, dextrose injections and laser therapy. There's probably more things I've tried but I'm here to say nothing has worked so far to ease anything except low dose Naltrexone (LDN) . I'm on 5mg and have been on this for about 5 months now and I feel it has taken the edge off the pain and burning at night so that I'm able to at least lie in one position for a few hours and get some sleep. Some nights are better than others.... some nights aren't much chop but it has definitely made a difference.
The dextrose injections were super expensive- as was laser. I honestly hate to think of the fortune I have invested over the years in pursuit of a pain free life and wanting to be able to walk more in comfort.
It's amazing what you get used to though and you do learn to adapt. I try to not think about it too much or I'll do my head in!
I also take Duloxetine 60mg - not sure if it does anything but am not game to cease it. I looked into nerve ablation but decided the risks did not outweigh benefits; same with the spinal cord stimulator... I'm not game.
I also have a medical background and from all that I have read and researched over the years I can only come to the conclusion that there is no cure.
As you say, we can only count our blessings.... there are many worse afflictions....
All the best,
Prue

I'm 75 and have experienced idiopathic peripheral neuropathy for more than a decade. I initially experienced strong, inconsistent tingling in my feet. It progressed to numbness, constant tingling, and pain. Sometimes the symptoms include muscle cramps. I have fallen quite a few times- it's scary every time. I manage to sleep by using strong marijuana gummies. I am limited in the amount and types of physical activities I can do comfortably. I have tried many medications without success. I feel defeated too often.

@ray666 Hi, Ray. Poor balance seems to be a common problem among those of us with PN. I just started PT. Mostly breathing and a few balance exercises. I am wondering, what specific exercises are you doing to help balance? Thanks.