Living with Neuropathy - Welcome to the group

@catro - Hi Charlie, wished I had some suggestions for you. I did have to smile some when I read your "Gee thanks for that" after being advised that the neuropathy was progressive but probably wouldn't cripple you. Those were my thoughts after years of dealing with neuropathy and finally getting a referral from my Mayo family clinic doctor to see a neurologist to get an actual diagnosis. After being told I have idiopathic small fiber peripheral neuropathy, I was told there aren't any treatments to help with the numbness that I was my primary symptoms all along. So, he told me the same thing my PCPs had been telling me prior to getting the diagnosis. That brought me here to Connect where my fellow members helped me learn as much as I could about the condition and what might help.

What has helped me some was maintaining a daily sleep schedule whether I'm sleepy or not along with regular exercise and eating healthier. One thing I wished I could do more of is walk but my back and spine limit how much I do. Still I try to get my 5,000 steps in a day but most of it comes from riding my elliptical cross trainer bike for 30 to 45 minutes a day, 4 to 5 days a week. I do think the mind can help like you said so I also use it help me ignore the numbness by just enjoying what I see around me in nature.

Thank you. Fortunately mine is not the kind that produces numbness. It is just a burning sensation which fortunately is not so severe that I can’t usually just ignore it. I try to eat the right things and get good regular sleep. I also get some exercise, just not as much as you. I think the Mayo neurologist just didn’t think I would live to be almost 89. I fooled him.

Thank you, for months now I have been interacting with neuropathy and prostate cancer groups. I don't know how groups are organized. I hope to be able to learn how to interact among groups.
Thank you for your introduction.

@tammy65 I go back in about a month. Prayerfully, I should be ready for the procedure(trial). Thanks for your response.

For a year now I have been dealing with neuropathy on my right leg, including a drop foot. I have not pain, just numbness and tingling. I would say my right leg is 80% compromised and my left leg was 80% good.
Suddenly, just overnight, 2 days ago I was unable to sleep because pain in my left leg. The pain is about 7/10. Acetaminophen doesn't do any good and only cooling my leg with ice helps me.
I would welcome any comments or ideas.

For those with feet issues, have you consulted a podiatrist? I am scheduled to go for some laser treatment with my podiatrist in the near future.

@tammy65, it is simply a living hell. There is NOTHING that helps me. I have found its impact to be progressively worse after completing Folfirinox. The afternoons and evenings are infinitely worse, if that is even possible. My neuropathy is a basket of everything in my hands and feet. I find myself dropping things, losing my balance, and falling on occasion. The tips of my fingers are numb, while burning at the same time. Also, when touching anything, I feel electric shocks. The numbness from the knees down reaches a peak in the toes. I also think my left foot is beginning to drop. There is a feeling of swelling and sand at the bottom of the feet, particularly in the front. Driving is becoming problematic given the almost non-existent sensation, I am not sure how it all ends. Stan

I was diagnosed with anti-MAG Peripheral Neuropathy. I’ve had 2 treatments of Rituximab which my Rheumatologist thinks might even help my RA. I’m currently doing another treatment as they can do it every 6 months. I don’t feel any improvement but I’m hoping this treatment is helping my condition from getting worse.

The only thing that seems to help my peripheral nerve pain is a hot bath. I’ve also I’m going to get into more stretching and flexibility as un flexible muscles and ligaments end up squeezing our nerves. Nonetheless hot bath has worked for me. Generally temporary relief

@catro hi charlie - i am 89 and dealing with pn much the same way - i have had neuropathy in the feet for years but it was mainly a tingle and a bit of rigidness in the toes at night and i didnt pay attention and hiked, walked, etc for years. It got much worse this year and has progressed to my calves and often to my arms in just a few months. There are not enough neurologists in Denver - it is a 6 month wait to see one and then they often are not taking new patients plus since there is no cure they arent interested. I am amazed I have reached this age in as good a shape as I am = slower and often very tired with little energy which is the worst but i keep going. I have no car so must continue to walk even if just to the bus. I will be moving in a month to senior housing which has an indoor heated pool open all year so I am hoping daily water aerobics will help keep me going. I read this site for information - someone mentioned rubbing the feet with VIcks and it does help at night. Other than that, it is just onward and upward. Dorothy