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

@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.

@johnbishop
My PN appeared 3-1/2 years ago, one month after I had decompression and fusion spinal surgery. EMT diagnosed. Idiopathic. No pain. Progressive numbness and pins and needles and tightness, moving from feet to calves to knees and, most recently, starting up my thighs and into my hands. Shocked by the quick progress. Terrible proprioception and balance. I have worked hard at being proactive. Balance and resistance exercises. Just started using walking poles. Scheduled for a second miserable EMT, for whatever that’s worth. Trying hard to not be undone emotionally. I keep repeating it could be worse. I’m learning to not reason from past to present—all the things I used to do that I can’t do anymore, but instead take the present as a baseline. Not as easy as it sounds! Definitely worried about how much worse the PN can get.

@johnbishop
My PN appeared 3-1/2 years ago, one month after I had decompression and fusion spinal surgery. EMT diagnosed. Idiopathic. No pain. Progressive numbness and pins and needles and tightness, moving from feet to calves to knees and, most recently, starting up my thighs and into my hands. Shocked by the quick progress. Terrible proprioception and balance. I have worked hard at being proactive. Balance and resistance exercises. Just started using walking poles. Scheduled for a second miserable EMT, for whatever that’s worth. Trying hard to not be undone emotionally. I keep repeating it could be worse. I’m learning to not reason from past to present—all the things I used to do that I can’t do anymore, but instead take the present as a baseline. Not as easy as it sounds! Definitely worried about how much worse the PN can get.

You might also get an EMG if you haven’t already. That might help identify the cause.

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?

@lalper - I've often wondered if my degenerative disc disease plays a part in my neuropathy symptoms which is mostly numbness and some tingling in my feet and legs. I'm 83 now but it all started in my toes sometime in my mid to late 40s and gradually worked it's way up into the legs. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. You are so right about it not being easy to keep moving forward. Looking back, I should have seen it coming - my wife used to tell me when I was in my fifties that I walked like an old man then. I just smiled but now that smile has turned into a smirk and on the good days, a smile that breaks into a short lived laugh.

Being proactive is an excellent approach. My gait is not good and I have trouble walking distances and my balance is not very good. I try to keep moving and make a point of exercising 5 or 6 days a week for 30 to 45 minutes on an cross-fit trainer recumbent bike and a few minutes on a new stepper that I recently acquired.

@johnbishop Thank you for your post. My PN was noticed around 2008. Started with very slight stagger that no one could see but me. Slowly it progressed until around 2013 I started looking for a diagnosis. It took 10 plus years to get it. Oh well, here I am now with numbness in my feet and legs, my balance is not good and use a walker at home when I remember it. Walking any distance tires my legs so I keep a walker in my car. Also use a cane for short walks. I do not have much pain and am thankful. My tests say I have stenosis in my neck and severe stenosis in my lower back. I do some kind of exercises everyday.

@chelsea2357 this is a continuation of a response I just wrote. I believe I did not understand how to respond to a post. Well away, here is the rest of my reply. I am going to look into the trek poles. I am researching the recumbent bike. I will end now and I am thankful for this site. Bonnie K