Increasingly Difficult to Accept Peripheral Neuropathy

@fisbo - We have all been there at one time or another but it is not a good place to be. I don't have any magic words or treatments that are going to cure your neuropathy. I'm no longer who I was either. I have difficulty walking and doing many other things that were fun when I was in my 50s and younger. Growing old with PN is the pits to say the least.

What helped me was to not focus on what I couldn't do anymore or the health issues I struggle with on a daily basis. Instead, I try to focus on things I specifically can do. One of those things for me was to examine my surroundings and find something everyday that I enjoy. Sometimes it's watching one of nature's little critters bouncing around looking for food and sometimes it's just helping a friend or neighbor.

John, you are the mentor that I always want to read... I have followed you for quite a few years now, off and on..

My foot issues began with hot burning feet many years ago. Erythromyalgia was the initial diagnosis self made, as I couldn't find anything about my pain online.. Then eventually some folks started the Erythromyalgia Association and began discussing the problem so many of us were trying to deal with.. I am glad that it has finally been recognized, because it was really lonely always wondering what the heck was going on with us.

I've been having checkups for Diabetes for the past bunch of years, but my A1C has never been above normal.. I will get it checked once more now, but have always believed my problem was idiopathic.. due to spinal pain and inflammation.. Nobody ever cared what I thought.. then or now. I am about to be 83 years old this month! I have suffered a very long time, as many others have and do..

My feet are both very numb now, as are my ankles and it is moving up my legs, also my hands.. I know we all have to go sometime... but these seem to be my only health issues! What lies in store for me in the years ahead.....

Acceptance of a disease that includes chronic pain is difficult. I was dealing with depression, anxiety, PTSD, and suicidal thoughts before pn struck. I have therapy regularly and have seen a string of doctors, looking for ways to lessen the pain. Over the years I've, for the most part, come to terms with both the physical pain and the emotional/mental pain. I find it very difficult to face living with a progressive disease for which there is no cure, and at the same time acknowledging the possibility that the mental issues will be maintenance issues. It's a work in progress, and the more I learn acceptance, the easier it is to live with life's difficulties.

Jim

Is anyone in the process or has had the Medtronic Stimulator put in? If so, what is your experience? For those who have had it put in, did you use a neurosurgeon or an orthopedic surgeon for the process?

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I'm 58. I am a diabetic since 2017 and peripheral neuropathy started with my feet (tingling, numb, painful nerve discomfort, etc..). Until this day(2025), I have been dealing with incurable, unmanageable, uncontrollable diabetes II and painful body peripheral neuropathy from feet, legs, waist and hands starting to become more and more numb especially feet as I have to wear two soft socks. And fell 5 times as legs went dead as no longer functioned properly. This was the most terrifying and scary feeling as I thought became suddenly paralyzed.

After 8 years with such painful conditions, you DO NOT want the neuropathy (PN-nerve damage) to grow, spread and affect your entire feet, calves, thighs, waist and hands as it is an extremely terrible feeling along with an uneasy painful and frustrating state of mind, major anxiety, stress, sleepless nights, nervousness with daily activities, etc.. And not to mention, impotent for the last 7 years and specialized doctor(s) want 20K to make you believe that they can help with it. I declined!

Sadly, advise for these serious mental and health complications and conditions were experienced as "NO CURE" ! The final solution mentioned by Neurologist was to amputate feet, and legs, and maybe hands. I could not live with myself with such a decision. I will continue to endure and suffer which I have accepted to convince my mind this nasty discomfort is strictly a part of my remaining style way of my life and golden years.

As I feel discomfort and pain, I purchased a 3 year dog (German Shepherd) to help encourage, smile, and walk at least 4 times a week which helps body, muscles, and seldomly nerves but still painful. He is amazing! I seriously regret not adopting a dog many years ago...

Sadly, I found NO devices, creams, massagers, meds, specialist, doctors, etc. to ultimately eliminate nor majorly reduce the discomfort and sleepless nights of Peripheral Neuropathy not to mention diabetes II(except for short/long term insulin to lower blood sugars on a daily basis). Again, I molded and learned to ignore both awful symptoms as it has been a part of my remaining life. An extremely sad way to live into your golden years.....

My advice is to eat healthy, "exercise', possibly adopt a pet for serious encouragement, and most definitely "Save your Money"…! As far as diabetes, I take insulin each day and eat healthy to help maintain blood sugars and when very low or high, PN brings out more of the dreadful and nasty pain in feet, legs and waist plus hands. And ultimately alters and brings extremely sad moments in my mind in which I try to fall asleep with sleepy pills and when at work must excuse myself some way to regain some control.........

My very temporary relief is 'icy hot' cream rubbed around feet, legs, hips, and hands which becomes expensive $12 week or two. With lengthy research, studies, doctors, specialist, I am still with the discomfort and pain as I found 'no cure.' We can place a person on the moon but can not find a cure for PN which I sometimes feel my life is pretty much over.

i do not mean to scare anyone but this is simply my long dreadful experience with PN.

My prayers are with all of you …

@fisbo - We have all been there at one time or another but it is not a good place to be. I don't have any magic words or treatments that are going to cure your neuropathy. I'm no longer who I was either. I have difficulty walking and doing many other things that were fun when I was in my 50s and younger. Growing old with PN is the pits to say the least.

What helped me was to not focus on what I couldn't do anymore or the health issues I struggle with on a daily basis. Instead, I try to focus on things I specifically can do. One of those things for me was to examine my surroundings and find something everyday that I enjoy. Sometimes it's watching one of nature's little critters bouncing around looking for food and sometimes it's just helping a friend or neighbor.

I totally agree with you! The most depressing situation is all of these ads telling us they can fix the problem and we get excited and they are all fake from what I can tell. I so wish they would just go away and leave us in our pain and quit trying to tell us they can fix it with 6 bottles of pills for only $300, today and today only. Do they know how awful that is for us to see. Very cruel. I never thought I would have something that no
one can give us a light at the end of the tunnel.