Peripheral Neuropathy is life changing: How do you accept it?

My insurance is good anywhere
Yes at Mayo Clinic
I hope you can get into Mayo Clinic
It’s not easy to get into here
That the clinic….
I have try three times.. one with an referral and two others a phone call…,
My daughter lives in Minnesota close to Mayo, now she can get in and has been seen there for Chrons dieseae
But there are good doctored over here but they got to stop thinking neuropathy. For I have problems with my feet that’s not all neuropathy. But is a foot doctor see neuropathy. They just don’t look any further. But that’s what I ran into.. hope you get answers

Thanks for that. From what you say your insurance covers you to be referred to Mayo Clinic if required.

I will have an knee replacement on July 2nd, I doing some research to check or how much arthritis and osteoarthritis is in my feet also now bone spurs

I am new here. Is this where I ask a question. I am 83.
About the last 6 weeks I have these symptoms.
Some numbness of the outside of upper left leg from above knee to hip
I can walk, very gently jog, sit, stand.
When I get into bed and lie down ( legs are straight) after about 10 minutes , the keg becomes very uncomfortable, sort of pain but more burning.sometimes if I get out of bed quickly , there is sharp pain.
FYI I have a hip replacement about 15 years ago.
6 weeks ago I had a left breast mastectomy which went really well. I think this
Strange keg thing started after the surgery.

I also have Gerd and IBS. It makes enjoying life very hard. I also feel guilty that my loving husband of 58 years
Is slowed down by my condition.

I have peripheral neuropathy - recently diagnosed after an EMG. Because of proprioception issues, I have fallen 4 times over the last two months. I live alone. Everything feels so difficult. I’m feeling very depressed even though I am on antidepressants and meet with a therapist. I cannot seem to find any joy in my life and only imagine it getting worse. I’m working on acceptance, but am full of sadness. I would appreciate any suggestions on how to manage peripheral neuropathy.

@ogl - You will notice that we merged your post with another discussion on the same topic so that you could connect with other members and learn what they have shared. If you click the link below it will take you to the beginning of discussion.
-- Peripheral Neuropathy is life changing: How do you accept it?: https://connect.mayoclinic.org/discussion/peripheral-neuropathy-life-changing/

I have learned that it helps me get through the day by trying to stay positive and focus on what I can still do, taking each day one step at time. @ray666, @njed and others may have some thoughts that helped them with acceptance also.

Hello,
I have similar symptoms and wonder if connected - I also have gastric issues also and underwent gastric diversion for severe reflux/gerd but lost far far too much weight and develoiped IBS, malnourishment. Operation was reversed May 2025 but still cannot gain any weight and no appetite but within a month of the reversal surgery in May 25 my neuropathy symptoms began on right foot progressing to left foot 2 months later. Also hands tingling began.

I now have horrible cramping and burning in lower legs and also wrists and side of left palm.
Also get quite wobbly and unsteady due to balance mildly affected.

I do wonder if the surgical procedure was cause of the neuropathy starting. Teatotal and not diabetic and hate they are saying idiopathic. Its horrible not knowing and having to deal with progressive disease.

Does anyone else wonder if gastric issues or operations could have contributed and if so what can we do?

Hello, @ogl

I remember when I, too, was full of sadness. And disbelief. I had been having worsening balance troubles since round'about 2012. At the time, I chalked it up to temporary light-headedness. It eventually got to the point where I said "Enough is enough!" and saw a neurologist, who administered my first EMG (I've had another since) and gave me my diagnosis: peripheral neuropathy. That was it in a nutshell at the time: just peripheral neuropathy. I've since been able to refine my diagnosis to chronic large-fiber axonal polyneuropathy. I've balance issues, but no pain (for which I'm grateful!).
Acceptance didn't come, and my sadness abate, until I was able to tell friends––without shyness––that I had a chronic disease. Just being able to say those words to friends made a huge difference. I suppose you might say that what helped me was facing the reality of my disease head-on (just to be able to call it a "disease" helped). It was then I realized that the more I ducked the truth of my condition, the sadder I remained. The more I acknowledged my condition, the sooner I came to realize, "Okay, it's bad, but it could be worse." That's when I started making lists of all the things I can still do (so long as I do them safely). My life began to imrove from about that time. Yours will, too. I'm sure that's hard to believe just now, but your life will improve. Your condition may or may not, but your life will!

Keep it touch! Connect's a great place. Stick around!
Cheers!
Ray (@ray666)

@gill83mary I have the same thing. If I stand in one position too long, the outside thighs on both legs get numb. Can't stand to cook like I used to, wash a lot of dishes, walk the grocery store. It's debilitating. That is coming from the back. A nerve is being pinched. When they get really numb, I can lean forward and prop on counter with back arched parallel to floor and the feeling starts coming back in my thighs. That's how I know it's back related. I have neuropathy in both feet, just the toes but are symmetrical so it's most likely due to back and not chemotherapy. I have also woke up during night to turn over and thighs would be numb too. I bought a firm pillow top cover for bed and that helped a lot. I'm asking pain management for another MRI, it's been awhile since last, to compare the changes since last. I'm just afraid one day I won't be able to walk or I'll hit the floor from legs going numb. I want to fix the problem before it gets too far gone.