Addressing the psychological impacts of neuropathy

Hi Andy @andyjustin, I also have my days struggling with the mental aspects of having neuropathy even though I only have numbness and no real pain. The Foundation for Peripheral Neuropathy has a webinar that discusses the mental aspect of neuropathy which I found somewhat helpful that I thought I would share:

I appreciate that. I think I was just trying to break up the point that no one really talks about how they’re feeling mentally and adjusting to whatever form of neuropathy they have I would love to see more people express their feelings on this in these chat rooms

By the way, when I struggle psychologically, I find it’s best to occupy myself with some sort of mental stimulation or diversion for me putting on my earbuds and listening to really great up-tempo music seems to calm my mind or plainly distract of the inevitability of my AN future,

Welcome, andyjustin (@andyjustin). Excellent topic. I hope others chime in. In the early months following my diagnosis and those days when I was a newbie following the posts on Connect, I remember wondering why more PNers weren't talking about the physcological impact of suddenly (and for me, it did feel like 'suddenly') having to re-identify myself as a man living with a chronic disease: Yesterday, healthy; today, a man with a chronic disease. In my case, it took countless hours wandering around in my own thoughts––plus a half dozen Composition notebooks filled in impossible-to-read longhand––before I was able to look myself in the mirror and say, 'Okay, Ray, this is the new you. Now let's get on with it.' I know I make it sound simple. It's wasn't. It was grim. And even after two years post-diagnosis, I still have my glum moments––my 'Why me?' moments––but thank god those moments are now short lived, three or four minutes and not whole days. Again, andyjustin, this is an excellent topic. There's so much more I'd like to say, but, since the me in the mirror advises I 'get on with it,' I'd better do just that. Here's wishing you a super weekend. Cheers! –Ray (@ray666)

Hello Ray,
Believe me and more believe me, I am living my hell on earth with my neuropathy. I am going through it all alone even though I have a wife and two children, a 26-year old and a 16-year old. I understand, off course to a certain extent, what you may be going through. It’s an absolute nightmare and heart wrenching when no one around you cares even a little to try and be with you. In my case, my neuropathy is progressing fast and I’m definitely in constant pain territory and not just tingling and numbness.
From all I’ve read so far, neuropathy is a highly misunderstood condition and the symptoms abound and depending on our respective bodies, each one of us has to put up with her/his own symptoms. And it varies from one person to another. It’s a very difficult condition to deal with.
Indeed, like you, I hope more people like you and me would join an open discussion on the psychological nightmare of dealing with neuropathy. I’m sure many others are going through the same situation.
Take care and thank you for hopefully having started a meaningful discussion for all those dealing with the psychological effects of their neuropathy.

Hi, Gus

One thing we could do is suggest a prompt and invite people to respond to the prompt. For example, a prompt like this:

"In the weeks and months following my PN diagnosis, I'd hoped to keep my condition to myself (other than to one or two family members), not letting friends and colleagues know that I was in pain or telling them that my wonky way of walking was merely fatigue. I was determined for people to see me as the person they'd always known. Today, however, many months (perhaps even many years) since my diagnosis, I sometimes wonder why I tried so hard to hide my PN from my friends and colleagues. After all, who was I fooling?"

If I were asked to respond to a prompt like that, I'd have oodles to say! 🙂

Ray (@ray666)

Hi Ray,
I'm relatively new to Mayo Clinic Connect; therefore, I am not completely familiar how the site works. In other words, how does a "prompt" work and how and where one posts it? It could be a start maybe to see if people might be open to and interested in (and if you are too) somewhat regular get-togethers online video chat about our challenges with neuropathy.
By the way, if you would like to reach me by email, *** you can send me a private message with your email address.
I am in Akron, Ohio.
Take care

Hi Gus, You will notice that we removed your email address to protect your privacy. Members can exchange their personal contact information using the private message feature of Connect.

Well, I am really glad that I’ve stirred up a conversation, having any sort of neuropathy, can sometimes be a very lonely existence for those who suffer and unexplainable tothe people who don’t quite understand the ramifications and implications of those who suffer from it. It’s good to have groups like this to be able to express yourself and vent ones frustrations, I no longer wonder who why where when I got this condition it serves no purpose finding solutions that works for you as always a priority but not necessarily successful. I keep trying to tell myself just keep a healthy attitude and a healthy lifestyle but seriously when my symptoms get bad all bets go out the window. I am 2 1/2 years into it,my symptoms come and go as do my emotions. wishing the best for everybody,going to sit out in the sun listen to some good music and enjoy the moment with autonomic neuropathy there are lots of moments I will endeavor to persevere!

I've been dealing with my increasing pain, not just from my idiopathic poly neuropathy, but also from the osteoarthritis in my hips, knees, and lower back for 10 years now. Like everyone here on this forum, I have good(okay) days, and I have bad days, both mentally and physically.
The one constant in my life ever since I had to retire and go on SSDI has been my wife. I'm convinced there isn't anything she wouldn't do for me if I ask her. We've been together for 45 years, and I know that I'm very lucky to have her in my life.
But there's only so much a spouse can do to help someone with their mental issues, and luckily, I have something that always seems to help, even when I'm in a very dark place in my mind.
This is going to sound very strange, and maybe a little off putting to some members here, but to help maintain my mental health, and also to help me cope with the physical pain when I'm having a really bad day, I listen to music, very loud, heavy, dark, atmospheric, evil, and Satanic Metal music on my headphones.
I've been a Metal Head since the late 70's, and my love for this music has only grown stronger as I've gotten older. It's something that no one can take away from me. I'll listen to it until the day my family plants me 6 feet deep.
Listening to music helps me drown out the pain and be by myself for as long as I need. My wife is NOT a fan of my choice of music, but she understands how important it is in my life, and how well it helps me deal with the crap that we have to put up with.