Living with Neuropathy - Welcome to the group

I'm not sure yet. I have Peripheral Neuropathy but I have never taken any tests. I have had neuropathy for the last three-four years, and during that time the attacks have been slowly growing in intensity. I am a married 87 year old woman and in good physical shape outside of the neuropahthy and scoliosis. I have an adult three-wheeler bike that I ride for an hour 3-4 days a week. A retired librarian, I live with a 90 year old husband and a cuddly cat. (The husband isn't so cuddly anymore.) I still play golf once a week and read books every day. I volunteer at our local library which keeps me well supplied with reading materials. I have a busy and comfortable life. What I don't have is much information about neuropathy and how to manage the pain. That's why I have joined this discussion group. Already it feels good to know I am connected with folks who share my concerns. Always nice to know one is not alone.

Welcome @arkansaslady, It sounds like you are doing a great job of keeping up with your health and especially by learning as much as you can about neuropathy and what might provide some relief. We are our own best advocates when it comes to our health. There are quite a few discussions where you can learn what others have shared about what helps with neuropathy. Here's a link if you want to scan through the list of discussions - https://connect.mayoclinic.org/search/discussions/?search=neuropathy%20what%20helps.

Another great resource for learning more about neuropathy is the Foundation for Peripheral Neuropathy. They also have a YouTube channel where you can watch webinars they have had in the past.
-- Living Well with Neuropathy: https://www.foundationforpn.org/living-well/
-- FPN YouTube Channel: https://www.youtube.com/@foundationforperipheralneu4122

Have you thought about seeing a neurologist for a diagnosis?

Hello, John. Thank you for your welcoming response to my first post. A little more context might be needed: About 7 years ago I had an appointment with a neurologist for a brain tumor that turned out to be benign. I was relieved and ready to leave when he informed me I had the beginnings of neuropathy. I thought he was crazy. I felt fine, no pain, no symptoms, and besides, had never heard of neuropathy, and didn't believe it had anything to do with me. How wrong I was! I didn't feel any effects for another couple of years, and then it began, slowly but relentlessly. At first, only at night. My internist put me on 300 mgs of Gabapentin per night. That worked for awhile, then she upped the dosage to 600 mgs at night, with an additional 1/2 pill each morning. But she also let me know that she did not wish to increase the dosage any more. Since then I have developed a few strategies of my own to fight the pain, especially at night so I can sleep. Before I go to bed, I apply a prescription cream from my dermatologist to the bottom of my foot, and then wrap it in an "icy" with an ace bandage. I take the gabapentin, but I also take anywhere from 2-6 marijuana gummies (10 mg each) throughout the night to keep the pain at bay. Without those gummies, I don't know how I would make it through the night. Guess that's all for now. Thank you for listening/reading.

my name is Sharon, I am 82 years old, have diabetes, bad. Have pn from falls, 13 surgery procedures on the torso.
my vagus nerve system was injured from all of the above, but especially when my fall on my back in 2012. I smached 5 vertibre in the thorax area. that with the 5 discs I injured in a fall in 87 became painful. I truly believe that the nerve damage at that time was a God send. The back pain before was unbearable. I have very little feeling in my torso therefore my quality of life was much much better. I have regular PN in my feet and hands from the diabetes ( since 2000). The vagus nerve damage is bothersome, but mostly managable. I tell people almost every organ in your body is some muscle to make it work, muscles do not work without nerves telling them what to do. My nerves are not communicating with the muscles, almost all of my automatic functions are not working and I have to manage them. thankfully the nerves to the heart are stronger than all the other non-working. They keep my heart beating if I don't get stressed. But the doctors have found, that if they stop the heart the nerves are not strong enough to restart itself without mechanical help. I use an oxygen machine attached to my CPAC machine so I am still alive in the morning. I am grateful for each and every morning I wake up. All the automatic systems, I manage as best I can. I use a lot of alternative medicine. thats my story.

Hey all,
I get the Neouropathy (sp?) from my bottom legs. There’s a reason from falling down on my rearends. I adds problems on my brain that’s weaker before. I am a TBI person 12 years ago and it’s here.

My right-side get weaker than before. So, the pain is gone, thankfully, from 2 mths ago a surgery from my lost est back. That’s great! No pain.]. So the other 50% is still here’s feeling, no-feeling, weakness in my right-side of my leg, to easy of falling down (that could hurt my head & possibly hurting my brain

Hey Greg. Neuropathy sucks!! I take Gabapentin, Cat's Claw, and marijuana to combat the pain, hot and cold pain, stabbing, etc.

You do have to be careful since you are a TBI individual and a fall could as you said hurt your brain and cause further damage.

Good luck and Cheers!
Jill the Pill

Hi, gcattnu39 (@gcattnu39)

No, feeling cold––or “chilled” might be more accurate (“cold” seems a bit extreme for what I feel)––doesn’t get worse no matter how long I remain in any given set of surroundings. The only way I can lessen that feeling of being chilled––assuming I can’t just get up and leave––is to don a sweater or heavier shirt.

I did do TENS therapy many years ago, but for balance (enlivening sleeping soft tissue), not specifically because of neuropathy (I hadn’t been diagnosed yet) or anything like unusual sensitivity to heat or cold. I didn’t continue with TENS because it wasn’t helping.

Ray (@ray666)

Dear Jill the Pill,
It’s sad for me, GABAPENTIN is twice-a-day to anti-seizure meds. No pain, no feeling of the med, but anti-seizure has helped me for 2.5 years ago since I had seizures and going to the hospital. I would love to quit these meds and I hope, everyday, stop these meds.

And I agree “ Neuropathny sucks!!” ❤️

Greg D.

Hello, Greg (@gregd1956),

I, too, have a slew of meds and would love to reduce the number by a quarter or a third. Of course, I won't do any reducing without my doctors' buy-in. The total of my daily pills was added to recently when I was in the hospital by doctors who were unknown to me (although I'm not doubting their best intentions). Before my hospitalization, my pill count (roughly reckoned) was four or five prescription meds and a half dozen supplements. Since my hospitalization, the count has risen to seven or eight prescription meds and a number nearing a dozen supplements (some are beverages). When I meet with my primary in a few weeks, I plan to place The List before us and ask, "Must I?" pill-by-pill. If I cannot reduce the number by at least a few, I'll soon need to replace my medicine chest with a Tuff Shed. 🙂

Ray (@ray666)

Hi, @ray666,
Meds, pills, drugs - I’m there. Before my TBI accident, 12 years ago, I had nothing except I had a med to keep - I had no idea; my memory is gone most of that from my bicycle accident.

I was healthy on my body & brain and was working well at my city, but before my bicycle accident.and yes, I take meds -like you and the rest of us. No pain know 2 mths away one if my doctors (most during my TBI accisdent) “fixed” my lower back from my rear-ends down to my feet. The pains gone - 5-% - and the other 5o% keeps me to exercise my lower body from my right-side from my knee to the bottom of foot.

Thx,
Greg D.