Increasingly Difficult to Accept Peripheral Neuropathy

Posted by fisbo @fisbo, Oct 10, 2022

I am finding it increasingly difficult to accept peripheral neuropathy it's all very well people coming up with suggestions but carrying them out is quite another. I am no longer who I was and think I am boring and miserable because I am now. Pain takes over and I have become fearful nervous prone to panic attacks which are awful because I start to shake with worrying about the future. I have other worries anyway but if this damned PN would go away it would help.

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Profile picture for John, Volunteer Mentor @johnbishop

@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.

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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.....

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Profile picture for BrendaY @brenday43

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.....

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Hi Brenda @brenday43, Hoping you have a happy 83rd birthday! I just turned 82 at the end of April and I can relate to not knowing what is in store for me in the years ahead. I think that is the 64,000 dollar question that we all would love to have answered...or maybe not. I'm thinking it's sometimes better not to not know and take each day one at a time doing the best that you can and enjoying friends, family, neighbors or even that smile you sometimes get when you out shopping like me and happen to look lost. Then a friendly employee will come up and ask can I help you find something? It has made my day more than once.

It doesn't really take away the numbness for my neuropathy and probably won't help with pain but I find it does make my legs and feet feel somewhat better when I rub lotion on them before I go to bed every night to keep my legs, feet and hands moisturized. I then slide a pair of loose socks on and sleep with them. Hoping you have a great weekend.

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Profile picture for Jim, Volunteer Mentor @jimhd

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

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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.

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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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Profile picture for hookedongolf2004 @hookedongolf2004

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 had a deep brain stimulator a long time ago for my neuropathic pain and it did nothing it was a big surgery for nothing. But that was a long time ago maybe there are people that have better luck today

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Profile picture for SKY @michhino

______________________________________________________________________________________________________

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 …

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lillaady-

I have had PN for many many years and visited with many specialist, doctors, hospitals, neurologist, etc, and if there was any actual remedies, cures, and solutions in the medical system, they would have known about the cures NOT make you believe taking pills, medications, insulin, etc. will eventually cure the painful discomfort health issues.

There pills, insulins, medications, consultations, etc.. are stupid Band-Aids with many side affects but who cares, right?!? We are contributing to their rich life styles and that's all. I rather trust a doctor with my life that would say, there is no cure and you are pretty much SOL but not one ever bothering telling me except for body part amputations.

Sadly, we trust these specialist, doctors, etc. to heal our medical and health issues but the truth is, they make millions and millions without a care in the world as long they receive their insurance claims and money. This may sound a bit harsh but its the real truth ! They are no different from majority of society which take and steal money for their own pleasures and benefits. Its extremely heart breaking!!!

It is a sad and ugly world we must better learn to deal and understand while we age. The goal for majority of the world is "how much money can I make" from clueless people. And I was one of them!

And into the golden years, I will continue to deal with the pains and discomforts plus attempt and fake to enjoy the rest of my short life the best I can with my precious dog.

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I know your pain as I’ve had it since ‘95. Neurontin helped (really, it worked really well) until they got cheap and put me on Gabapenten, then I was screwed for Neurontin after that. These doctors prescribe these medicines without looking at the patient as a human, and then we have to deal/pay for their apathy.

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Profile picture for John, Volunteer Mentor @johnbishop

@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.

Jump to this post

I couldn’t agree with you more since my diagnosis which by the way it took several years things have changed quite dramatically. It does become increasingly difficult even with my British stiff upper lip in full swing however I absolutely agree with your comment on don’t focus on what you can’t do focus on what you can. One of the great joys in my life is a daily visit to the gym where I do aqua fitness once in the water and with the aid of the buoyancy of the water it is one of my great joys I can move run do all the things that I couldn’t do Yes I admit when I arranged to meet friends I have to carefully consider where to park the car how far it is to walk and to be sure I don’t become overtired. I have yet to use a cane even though my doctor has told me it will be far more painful to your body than your pride if you fall I will get there with it but just not yet.

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Profile picture for hookedongolf2004 @hookedongolf2004

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.

Jump to this post

The only person that I will ever take advice from with regard to my peripheral neuropathy is my doctor. Although I live in England, I research John Hopkins and the Mayo Clinic and if I see or hear anything that makes me think that could be helpful I will then refer it to my doctor so far I have found no miracle cure. I go to the gym five days a week to aqua fitness and as I often say in my heart whilst sitting on my recliner, I can run a marathon. It’s all about keeping your spirit up. Keep going and good luck.

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Our tax dollars are not at work. Theft by deception is a crime yet these phony drug scammers are everywhere taking our money and we still suffer. Why isn’t the FBI investigating these criminals who sell garbage drugs. Its time these corrupt scammers get shut down.

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