Connect
← Return to Living with Neuropathy - Welcome to the group
Discussion
Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
Hello,
I have peripheral neuropathy. The doctor who diagnosed this had no explanation for why. She simply said it was pn and progressive. Start with low dose of gabapentin.
I feel that there has to be a reason and have considered trying to go to Mayo Clinic.
I also have high B/P and take lisinopril and spironolact.
A research dr. In Stanford has written a article as to possible causes and mentions the above.
It is getting worse and trying to find a cause gives me hope.
Thank you for this blog,
Shara
Replies to "Hello, I have peripheral neuropathy. The doctor who diagnosed this had no explanation for why. She..."
Hi Shara, my name is Johnmacc. I too have PN since approx. 2015. I tried several meds and settled on Gabapentin low dose. Over the years the pain in my feet has gotten more and more intense and my primary has increased my dose all the way up to 3600 mg daily split over 4 time frames. I still do various tests to find root causes and will never stop learning.
I too have Peripheral Neuropathy, it’s been about 6 years or so since it started. I believe the cause is from either damage to my feet from standing on my feet for 10 hours straight/5 days a week at work or when I was getting burning itchy welts all over my body-my only relief was to scratch my feet on the concrete steps at the front of the house. My pain has gotten gradually worse over the years and I’ve tried EVERYTHING- Lyrica, Gabapentin, T1s, Vitamin B12, CBD/THC, magnesium, custom orthotics, compression socks, hot/cold foot baths, stretching, massage therapy. Nothing works! My pain has gotten so bad that I’ve had to call off work the last 2 days because it’s so painful to walk. I am using a walker just to take some of the pressure off my feet. I too have high blood pressure and am on meds for that and my thyroid. Yup I am a mess!! Sorry I’m not much help here but I am commenting to let you know you’re not alone and to follow your feed to learn more and talk to others going thru the same thing.
Best of luck,
Kristin
Connect
Hello @shara, Welcome to Connect. I'm sorry to hear your neuropathy symptoms are getting worse. I do congratulate you on researching and learning as much as you can about your condition and possible treatments. I have idiopathic small fiber peripheral neuropathy and shared my story in another discussion here -- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/.
Not sure if you have seen these two websites which are my favorites for learning more about neuropathy:
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
Can you share a little more about your symptoms and the tests used for your diagnosis?