Living with Neuropathy - Welcome to the group

I have extreme neuropathy. I can't balance, on my feet, the pain goes up my legs to my knees. My legs feel like logs. They are cold in the morning. I get shooting electric pains shooting into my legs. These pains have been getting stronger, and now I get them on the bottom of my toes. My hands are numb most of the time, and I can't pick up things, and I drop things all the time. My colon feels like it's clogged. I used to have small pencil size, bowl movements. now they are more like mush. I feel like my colon is clogged. I don't know what to do. My doctor told me when I was diagnosed that there was no cure for me. I have felt like I've been dying for the last few years. I refuse to go back to him, he was a jerk. I am currently away from home for the next 5 months. Last year I fell and broke my femur, had surgery, and fell again, and broke the same femur in a different place. The surgeries have made my neuropathy spread quickly. I'm afraid to have any surgery.

Thanks got it!

Welcome @eep, I'm sorry to hear you are struggling with your neuropathy symptoms. I know it must be extremely difficult to deal with. I wonder if you might find some treatment ideas that you haven't seen before on the Foundation for Peripheral Neuropathy's website here:
-- https://www.foundationforpn.org/treatments/

Have you looked into any exercises or therapy to help with your balance?

Hi Jake, I am new to the group and still trying to find my way around. Overnight, literally I got out of bed and the pain in my foot was horrible and never stopped for one month. My daughters wedding a month later and then I woke u, and within 10 days the numbness move all the way up from my calves, thighs, privates, belly and then the lips. Every am it was moving.

Has anyone had positive experience with new shingles shot and peripheral neuropathy

Welcome @wmarkham, I have had peripheral neuropathy for 20+ years, no pain, just the numbness and some tingling. I had the new Shingrix shot earlier this year along with the first COVID booster and the only side effects were the normal sore arm and a little fatigue.

Have you had the Shingrix vaccine along with other side effects?

@marianmabryharris
I never heard of such rapid advancement. I wish I could help but I don't have a clue.
Mine went from my feet to just above my waist but it took years.
Now the pains are gone. Numbness took over but again, it took years. Actually decades.
Are you tried taking anything any medication or other treatments?
Best of luck,
Jake

I had PN for 5 years before getting my 1st Shingrex vaccine in early 2021. Because I opted to get my first two Covid vaccines scheduled after that, my 2nd Shingrex shot was 6 months after the 1st, but within the 2-6 months apart guidance from the CDC. Anyway, all 4 shots caused arm pain as normal, but I will say the 2nd Shingrex vaccine added more body pain, fatigue, and frustration for almost a week. However, it didn’t compare to having actual shingles 8 months earlier, so it was a breeze by comparison. I saw no change in my PN after any of those 2021 vaccines; my PN fluctuates day-to-day between tough or great days, and I saw no change in that. That was my experience anyway, if you choose to get them, I wish you the best!

My husband has PN and I ,as his wife, am supportive. He’s tried a lot of treatments- sanexas machine, injections, acupuncture, physical therapy. Only physical therapy helps. He
has tingling in his feet and weakness in his legs that make it hard to walk. Any suggestions of
What else to do?

What's helped me walk (when the weather is nice!) is a set of lightweight trekking poles. They also help with my balance issues when walking.