Living with PN, do you find yourself retreating from life?

Thank you, tessie63 (@tessie63), for such a beautiful reply! I remain torn between, on one hand, preferring to stay at home and to invite my friends to come see me, which, up till now, they've been happy to do, and on the other hand, feeling terrible that I'm rarely ever eager to visit them in their homes. Only this morning one of my friends dropped by who've invited me several times to come to his home for dinner. I'll confess when I receive an invitation to "dinner" at this time of year, my mind immediately thinks "darkness," "uneven sidewalks," "entry steps without a railing," and so on. I know I'm over-dwelling on the negatives, negatives that could so easily be nullified if only I would forthrightly explain to my friend and his wife why I'm inclined to stay at home; they would––without batting an eyelash––offer to pick me up and drive me home, escort me to the front door, etc. Tellingly, as my friend was leaving this morning, he paused to say that he and his wife what me to come have a meal with them, making a point of adding, saying his words as if they were in boldface, "But we'll make it a lunch, Ray. What do you say? How would that be?" I, too, wish you well, tessie63. Stay safe. Let's all of us stay safe! –Ray (@ray666)

@bjk3 this is Bashful Bob Your falling may have a lot to do with ears, eyes, as well as your legs and feet. I have neurophy in the hands and feet that started dstroying my balance. I put on vicks vapor rub first thing in Am and that afternoon I use Blue emu and rub on. and for me that makes it livable. It isn't a cure but I often forget I even have it and move just fine. I have found excersize is the only way to build up your legs arms and body every part. I found for me. I started walking like I did and 8 hours after open heart surgery I refuse to use bed pans so I started walking the that day. Sure upset my nurse until she discovered everyone isn't the same. That was back on 2008. and I was walking three miles a day after three months. Today I can walk a mile swinging my arms and my hobby is building. Cabinets , and wood sheds up until a douple years a go I walked three miles a day. Actually walking builds up the whole bodynot just the legs. I also ride a excersize bike up to 5 mile per day It dosen't have to be all at one time. I find breaking it up often allows me to walk or excersize daily more than once as long as you don't over do it After a problem three years ago that destroyed my mussels, lungs, and blood pressure sky high, I also have a heart implant and many heart Attacks. I found doing excersize from sitting in a chair position and doing boxing movements including jumping jacks after a few months I was right back at doing anything I liked without any pain and my balance was returning. Yes I admit I'm a might sore at times ,but as I keep at it even thats disappears. I started small 30 min a day and built up. good luck on what ever you do and I hope things work out better. today I work 6 to 8 hours with out stopping. using my hands feet, climbing latters bending over I even got down on my knees, I can't kneel yet but working at it. By the way I'm going to be 90 mext month, so for me just living has been a real challenge.

Hi ! I haven’t posted in a while. Yes to your answer- constantly not going because of pain and balance - mostly depression from the pain and not finding anything to combat or ease it so I can enjoy a day or evening out.
My advice to anyone lately is if you have symptoms, start early to resolve and live in a city that has a Mayo Clinic or Teaching Hospital that has trials and research - someone /some group that can empathize with you. Chronic pain / idiopathic neuropathy not good combination. They feed each other.

@patriciaschulz1950 I am in the same boat…. can’t walk more than 15-20feet without having to sit. And can’t sit more than 20 minutes without getting up and stretching the pain out. Have severely restricted outings and miss them. MD’s say I have stenosis compromising the sciatic nerve. They want to fuse spinal bones. From what I read that does not work very well and leads to further surgeries. Too afraid to do it.

Hello @xandermac, I see this is your first post on Connect so I would like to welcome you and thank you for sharing your experience. You mentioned your doctors are suggesting spinal fusion to help with the stenosis compromising the sciatic nerve but you are afraid to have the surgery for fear of needing further surgeries. I thought you might find the following discussions helpful:

-- Will lumbar spinal fusion solve my leg pain or just add new pain?
https://connect.mayoclinic.org/discussion/will-lumbar-spinal-fusion-solve-my-leg-pain-or-just-add-new-pain/
-- Lumbar Spinal Stenosis---surgery questions: https://connect.mayoclinic.org/discussion/lumbar-spinal-stenosis-surgery-questions/

How long have you been dealing with the pain?

@xandermac This is just me, one person, but you sound exactly like I was before spinal fusion surgery in 2018. I had a 20 minute window to be on my feet, before excruciating pain. I’d go early to the grocery store on a week day, pull into the handicapped spot with my plan in mind, walk as quickly as I could to a few needed items, head to the self check-out, and be back at my car at the 20 minute mark and feel the excruciating pain start as I’d lower myself to the car seat.
I decided I couldn’t live like this. My mother, a smart BSN, RN, always said to have surgery at a major medical school teaching hospital- top surgeons, excellent infection control, lots of attention from residents and interns. I researched the spinal surgeons in the closest one to me, made an appointment with the head of the department (took 6 months to get in), went for the evaluation, testing, confirmed diagnosis of spinal stenosis, plan explained, went for the surgery. Full recovery from surgery took 3-4 weeks.
The surgery was totally successful- I have no back pain, no thigh pain, no leg pain. I do the PT home exercise program still, walk a mile and a half daily, do the exercise bike when there’s bad weather. I’m 73 years old.
People will want to tell you terrible stories of their husband’s sister-in-law’s cousin’s awful experience with surgery, but it gave me my life back.

@centre You are right on target ~ and congratulations! Mine was done in 2022 at the University of Iowa Hospitals and Clinics (a teaching hospital) and, like you, I was so fearful of an outcome not worth the drives, appointments, tests, pre-op yada yada but really I had no choice but to do it (decompression and fusion L-2 to the sacrum). After years of spinal injections, which became less and less effective over time, there was no other option.
I will say there is a chance that any neuropathy that a person already has may progress post-surgery. Mine did, and I'd had it for at least 20 years before the operation. But still, the back pain before the surgery was worse than the neuropathy pain (feet, hands) that I have now, thanks to my pain doctor and neurologist working with me to fine-tune a treatment plan.
Blessings and peace to you,
Barb

@quietriver Good Morning, and thank you for your thoughtful offering. I'm impressed with your stamina and also with your kindness in explaining what has been your success in treatment. Lots of common sense and also insight into a fuller picture. And, Happy 90th Birthday a month early!
The two falls I referenced had weird circumstances - that is, I wasn't just moving around as in a normal routine. The first time, I had dropped a partial bowl of tomato bisque on the floor and hadn't noticed that a glob of it had landed on the tip of my cane. You can imagine the outcome. The second was an attempt to carry my 16-pound dog along the countertop, using the countertop with my free hand to steady myself, not being able to use my cane and carry my dog as well.
His weight threw my balance off - especially since he was wiggling, and the toe of my right foot caught the heel of the left - and of course I had no extra hand to grab onto anything. You can bet I learned some key lessons from both.
Thank you for your concern - hope you have a wonderful birthday and year ahead!

Hello,

My falls, too, have always involved some "other something," never, in my case, a glob of bisque or a 16-pound dog, but nevertheless, it's always involved some "other something." The "other something" involved in my last fall was a broken dish. I'd successfully swept up and tossed into the trash the majority of the shards, and was bending over with a tiny brush to whisk into a pan the last of the fragments––and THUD! down I went. Other than my ego, I hadn't injured myself. However, realized immediately that I'd fallen because I'd momentarily stopped talking to my body's internal gyroscope, the mechanism that––if I oay it strict attention 24/7––I'll avoid "surprise" falls. (I suppose all falls are "surprise" falls, aren't they?) Since PN stole my youthful good balance, I've had to resort to talking to body with more care anddeliberation than I ever had to in years past: talking to my feet, my akles, my knees, my hips, my center of balance, the position of my head, on and on and on, to every mobile part of me. Doing this demands a level of concentration that, until PN, was wholly unknown to me, and now that I live with PN all day, every day, I can find quite exhausting.

Ray (@ray666)

@ray666 Hi, Ray - Yeah, I don't think anyone outside of experiencing PN can appreciate the exhaustion that the constant deliberation and concentration (great words, there!) can exact on a person. All part of the bargain, but it does tend to isolate a person, at least emotionally. At the same time, I don't believe anyone should feel any shame in this. It is how our bodies respond to living to an age for which we were not necessarily prepared. Here where I live, short courses are offered in ways to prepare for, say, selecting an assisted living facility, or for deciding on long-term care insurance, or for preparing a trust, or for planning a funeral, or for leaving a will, documenting a healthcare power of attorney, or for choosing an executor ~ but not for the 24/7/365 hour-by-hour attentiveness needed to keep oneself standing or seated by plan. There is a lot of great advice on Connect about researching what works for some, for staying educated about PN, and for sharing our interconnectedness in our challenges. I'm thankful for the comments and testimonies. Prayers that we all stay safe and well! Barb