Whats my future?

Hi friends, I’m usually an upbeat problem-solver, but coming today for a safe place to complain about this darn PN.
This week has been a hard one. I’m at a weeklong family reunion in the mountains of North Carolina and I can’t do much of anything. My balance isn’t good enough for the hikes, visits to the outlooks and the waterfalls. My PN leg cramps up terribly trying to swim, so can’t go in the pool I don’t dare trying tubing, and rafting would be unsafe. I can’t drive- the PN is in my right leg, now over in my left foot, can’t do the extended braking needed for driving in the hills, valleys, and hollows. It’s such a difference from what I used to be able to do and wish I could do now. But, as the saying goes, “If wishes were horses….”
Thanks for listening.

Good morning, @andyjustin. On reflection, I can see how I may have had a bit of a leg up when it came to retirement, transitioning from one time of life to the next. Mine was never a career that offered a formal retirement; instead, in my line of work, practitioners most often continued working for as long as they felt up to it (until, as we'd sometimes would tease one another, we fell over on the commissary line 🙂 ). I'm fortunate in that–even with the considerable adjustments I've had to make for my PN–I'm able to continue working, even at 79 and in several unavoidably modified ways. (For what it's worth, I, too, have my bad days, They occurred more frequently in the months following my diagnosis; luckily, they're fewer now–fewer, but I still have them.) –Ray (@ray666)

Mornig,today is Thursday and inthe last week I have developed new symptoms incredible pain from try myalgia. This is a new symptom. I have never known pain like this before and I when I say that I know pain I have broken multiple bones in my life I’ve had to go through withdrawals from painkillers, cold turkey, but nothing compares to the searing pain of tri myalgia. I usually take roughly 1800 mg of gabapentin every day which is which is twice as much as I started a year and a half ago. My symptoms are exponentially getting worse and medicine or should I say the medical profession has no answers I have met people who have had the surgery to leave the symptoms of tri myalgia and I am not willing to do that plainly my long-term prognosis says I have no long-term so now I am busy trying to figure out how I can settle the future for my wife And adult children instead of mine it’s a bitch. I still remain hopeful these new symptoms affecting me wil pass and at least give me a break until they return or they manifest themselves in another way, I am very pragmatic about my situation. I’m still doing everything possible such as great diet. Great supplements, daily workouts support from my friends, but the hits keep coming staying positive. But nonetheless, living with my reality and the reality of my situation You know it’s not really just a question mortality it’s the question of being able to tolerate losing control of The body that was gifted to me

Hello, @centre

I'm the fellow who claimed in a first post that his pre-PN future has remained unchanged, with only modest modifications to accommodate PN's limitations. However, in a second post, I had to confess that many of my so-called "modest" modifications have not been all that "modest." Your post about your family reunion has reminded me of how abundantly true that is: that many of my modifications have been the farthest thing from "modest." How so?

Only this week, my partner and I decided to give up our lease on a mountain cabin for almost 20 years. Why? Because of my PN. Just going from the car to the cabin was a nasty fall waiting to happen. I could no longer walk the mountain trails, not only the narrow, rock-strewn trails but also the comparatively flat but gravelly roads. Worst of all? Traveling to and from the outhouse, especially at night. That proved impossible, especially for a fellow whose ten-step excursion down the garden path to retrieve the day's paper was already an Olympic challenge.

I wish you well, @centre! And thank you for today's post!

Ray (@ray666)

Mornig,today is Thursday and inthe last week I have developed new symptoms incredible pain from try myalgia. This is a new symptom. I have never known pain like this before and I when I say that I know pain I have broken multiple bones in my life I’ve had to go through withdrawals from painkillers, cold turkey, but nothing compares to the searing pain of tri myalgia. I usually take roughly 1800 mg of gabapentin every day which is which is twice as much as I started a year and a half ago. My symptoms are exponentially getting worse and medicine or should I say the medical profession has no answers I have met people who have had the surgery to leave the symptoms of tri myalgia and I am not willing to do that plainly my long-term prognosis says I have no long-term so now I am busy trying to figure out how I can settle the future for my wife And adult children instead of mine it’s a bitch. I still remain hopeful these new symptoms affecting me wil pass and at least give me a break until they return or they manifest themselves in another way, I am very pragmatic about my situation. I’m still doing everything possible such as great diet. Great supplements, daily workouts support from my friends, but the hits keep coming staying positive. But nonetheless, living with my reality and the reality of my situation You know it’s not really just a question mortality it’s the question of being able to tolerate losing control of The body that was gifted to me

Thanks for your post, Ray, I really needed that shoulder pat of commiseration for things needing to be left behind because of the PN. I can only imagine the hard facing of reality in your and your partner’s discussions of whether it was time to give up the beloved mountain cabin lease.
I have two more days to go here. How’s this for making lemonade out of lemons? The middle generation makes the daily excursion plan, off we go, with the very anxious 105 lb Great Pyrenees dog. If the activity allows dogs, the dog comes too. If the activity doesn’t allow them, I babysit in the mini-van, because I usually can’t do the activity. But, I’m getting some good books read and the dog and I are becoming good friends 🤣😂

Hi Andy @andyjustin, I'm not sure I understand what diagnosis you have causing the extreme pain. I haven't heard of tri myalgia but I think I have something similar - polymyalgia rheumatica (PMR) but it's currently in remission. When it is active and flaring up the pain can be incredible like you mentioned. My second time around with it I made some lifestyle changes like you what you are doing now with diet and exercise which I feel does help keep it in remission.

Do you see a rheumatologist? Just wondering if they have some suggestions or treatment to help with the pain.

Have you heard of Botox injections for this? You might do some research on that. Because my neuropathy is progressing, I was having trouble lifting my eyebrows, and I had a permanent scowl. I had Botox injections done between my eyebrows . I could actually feel that tight brow area relax. I look better, but a bonus is the release of tension in my brow. I did some reading then about Botox as a treatment for neuropathy. You might look into it.

Try myalgia aka tic de la rue, anyway, yeah, I’m a mess. My voice is croaking Muscles my neck Muscles are dropping AKA turkey neck but I have a great attitude just taking it as it comes all of these new symptoms croaking and Delarue suck a lot of doctors reality or my reality. I’ve been told this is just the way it’s gonna be. I am sure I take medicine for pain, even though the pain sometimes cuts through so I take more medicine gabapentin but eventually, they’re gonna move onto opiates when the gabapentin doesn’t quite do it and have to say with some of this facial pain gabapentin doesn’t do it in the last week. I’ve had over 12 episodes. My jaw goes from being numb to Feeling like a sledgehammer is hitting the side of my head anyway I’m just Venting a little bit today and I’m sure like everybody else. I don’t think you know more than an hour without thinking about it even when it doesn’t hurt so much I’ll leave it at that everybody have a great day.