Psychological effects of living with neuropathy

Hello, domiha (@domiha)

Whine away!  We all do a bit of whining from time to time. I know I do. I did a lot more whining before I got my diagnosis. (I have idiopathic sensory-motor periphery neuropathy. When I'm pressed for time, I just say ISMPN.) I'm one of those who's blessed with not having any pain. I'm a study in wobbliness, however. You put it beautifully: even when you're doing the best you can, "I take my feet with me … "It's the same for me. I have good days and bad days, and on the best of my "good" days, I still have some degree of wobbliness for a companion. I'm a year-and-a-half into knowing that I've got ISMPN –– although the earliest symptoms were there as much as ten years ago –– and, although I'm getting better at
accepting my physical limitations, the psychological wallop was a true gut punch. Others here have heard me mention this a gazillion times, but to underscore what I mean by gut punch, I'm an actor; I've worked as an actor all of my life (since my teens). When I got my ISMPN diagnosis and learned there was no pill, no cream, no therapy that would make my wobbliness go away, I had a heart-to-heart with myself and decided that wobbliness on stage, in front of hundreds of people who'd paid good money to see an un-wobbly actor, just wasn't worth it –– so I retired. (I know I could have continued working, using a cane or other device, but … ) The psychological hurt was punishing. However, I've learned to get over it. On the advice of friends, I've started my own freelance voice-over business. Between you and me, I'll admit that voice-over work is not as much fun as acting; it's not even a close second (maybe a close eleventh?), but it keeps me busy; it's restored a sense of purpose and given back to me a way of saying –– both to others and to myself –– "This is who I am, and this is what I do." I'll end here. I'm glad you've joined the community. Stick around. Read. Post. Share. Learn. Oh, look, there's a vacant comfy chair over there. Why don't you grab it? In all things, I wish you well.

Cheers!
Ray (@ray666)

Feel free to whine. It helps a bit. Sending love ❤️ and support 🤗

If there’s room on that comfy chair, I’ll sit. ☺️. A little wine 🍷 while we whine. Thanks for sharing 🫰🏼

Hi, @valec ..... I would love to have little wine 🍷 while we whine, but one of the things I kept reading for those of us with PN was to cut out ALL alcohol. I typically had a glass of red wine with a meal and an occasional cocktail. But it has been several months, now, and I honestly don't notice much of a difference. Perhaps in my case the wine really wasn't playing a part in my symptoms. I suppose I need to try going back to my old habit and see if it makes things appear any worse! 😂

@ray666 Thanks for your response. As I read it, I was reminded of that song from "The Showman" - "This is me!" I have been retired for 9 years now... and do not miss the paperwork. I was in helping professions all my life, and I do miss the interaction with people... but the paperwork had become too time consuming. I'm sorry that you had to give up your beloved acting career, as it obviously brought you a lot of enjoyment. I can't say, either, that I have a lot of "pain" with my PN. I do have pins and needles, tingling, and numbness in my feet and slightly into my ankles at times. On occasion, I may get the burning sensation in my toes. But for the most part, my feet feel numb and tingly, which is strange.... and I have some issues with gait and balance at times...but not a lot of actual pain. If I'm walking full speed in a pretty straight path, such as for exercise, I tend to wobble less. I have more problem maneuvering from room to room in my home.... or in stores with aisles and stands to travel around. I was diagnosed with spinal stenosis in Nov 2021. I saw several neurologists and several orthopedists before deciding on one. The spine specialist I chose sent me for PT, and when that didn't do the trick after several months, he sent me to a pain specialist for epidural injections in my spine and also in my sacrum. By Nov 2022, the pain in my hips and legs was so bad I could walk only about 30 yards before sitting. I had a four-level laminectomy in Nov 2022 and two months later resumed PT. After a few months of the PT, I seemed to still be having problems with balance, so the spine doc sent me for an MRI of my neck, and he found that I had a disc at C-4 that was pushing against my spinal cord. No pain, but it obviously didn't need to be left to get worse... so I underwent a cervical fusion in May. After 6 weeks, I resumed PT.... and I could tell immediately that the cervical surgery did help. But the balance was still off a bit, and the conclusion is that it was related to the year of compression of my spinal cord from the stenosis. Here I am almost 2 years later .... able to walk again, but needing a break more often than before... and also my calf muscles seem to tire more easily. Could it be from sitting on my keester too much during the lockdown? I'll never know. I try to walk everyday. During the summer I swam. And I do go to the gym on occasion. I've read and researched, and I had my PCP check my Vitamin B-12 and B6, both of which are fine. I've bought "recovery shoes" in several brands. Some help more than others. I've gone the Gabapentin and Lyrica routes.... neither one doing anything for me other than making me feel loopy. I now take a low dose of Amitriptyline, but I can't say it helps very much. I have taken Benfotiamine and R Alpha Lipoic Acid ever since not long after my surgery last November... and it's about time I chunked those, too, to see if I notice any change. I have a foot massager that I slip my feet into several times a week, and that helps a bit. But I'm gradually coming to the realization that, like you, this is something that is a part of me now and I will just have to live with it. You said "the psychological hurt was punishing," and I guess that's where I am now. At 72, I suppose I should be grateful to still be mobile. albeit with limitations. Bette Davis had it right when she said "old age is not for sissies." This old body is beginning to show signs of wear and tear... and most everyone goes through aches and pains with aging. But I refuse to mentally "grow old" any sooner than I absolutely have to. 🙂

Yea. I know. I kid 🤣. Basically yea… They say stay away from alcohol. Everyone is different though. We have to do what works for us.

PN and alcohol make for an interesting topic. I don't drink, but it has nothing to do with my PN. I used to drink like (as they say) there was no tomorrow. I may have had some pretty wobbly moments back in my drinking days, but that was Jack Daniels, not PN. I finally quit – 32 years ago – but only because I was tired of being blotto every night, having no ambition, and just all around feeling crappy. Only a few months ago, while talking to my neurologist's MA, I was asked something I thought was rather spooky. As we were ending my visit, she asked, "Were you once a heavy drinker?" Of course, I fessed up on the spot but then asked the MA, "Why do you ask?" It seems even after 32 years my drinking days still showed as an almost invisible "shadow" on my brain MRI. PN's weirdness goes on … and on … and … 🙂

Good evening @ray666......I am so glad to meet another Jack Daniels fan. I really enjoyed the Jack Daniels Special Select. Every once in a while, (1 or 2 times a season), I have a small, very small glass with some ice. The other 95% of the time I have some Uptime with Zero Sugar fruit juice.
We can pretend you know.

May you have peace and pleasure.
Chris

@domiha - I imagine we can all relate to you! We have lost something very special and I would think grieving our loss is natural. We all mourn at different rates and I would have difficulty believing that every single one of us doesn’t have an occasional pity party. When I get down, I think of words of encouragement a fellow Neuropather on here posted, @njed - “Focus on what you CAN do, not CAN’T do!” That keeps me focused on the positives and help accept the changes. Ed also likes to say “Keep Moving” but sometimes I find that my butt needs a chair, and I’ve found renewed enjoyment in utilizing my seated time for moving my hands & mind with reading and puzzles, watching TV or a good movie, and just giving my legs the proper rest and refueling they need until I’m re-charged. I sympathize with you and I’m hoping you find a good balance of happy activities with this new stage of life we’ve been handed.

@dbeshears1 Hi, Debbie! I thank you for your encouraging words! Yes, this IS a grieving process. It's a change in our lives that affects each of us in different ways. And an occasional pity party is not bad as long as we come out of it with a renewed sense of focus on the positive!
One positive is finding this group of caring, compassionate people (like you) who understand and know exactly how I feel.