Neuropathy with back pain exercise

@phyllisq My pain management doctor has told me, at least in my case, they aren't related.
And my back pain is the same as yours. I can't stand and do things for much more that 15 minutes and I have to sit down. Are you seeing anyone for that pain?

@brennankb55 Good luck with the epidural. Mine has done nothing to help. In fact, my pain is as bad as it ever has been! Very frustrating!

I've been pricing the Naltrexone and am interested in giving it a try as a way to get off of indomethicin, which is losing it's effects now after taking it for about a couple of years.

I had back surgery and had a new disc plates rods and screws put in. Back feels great but still have a perpetual twitch in left foot. Had one nerve severed and still have the twitch. Dr wants to severed a second nerve. Anyone have a perspective on this?

@brennankb55 Thank you so much. If you can, let us know how the epidural works out for you. I had them, 3 months apart, for 2 years before I finally came to the conclusion that surgery was my only option left. At first they provided complete relief for a few weeks, then gradually wore off. By the last two epidurals, there was virtually no effect at all. This falling off over time is, from what I've been told, is to be expected. It does feel like you've suddenly aged more than 10 years! And yes, naps are great. But once chronic pain is part of your life, whether controlled or not, it is hard to keep up with everything else, because of the energy it takes to cope.
Before I reached senior status, no one spoke to me about these possible eventualities, and I have basically chosen the same path with my adult kids. Most of us don't want to be seen as complainers, and we also don't want to add to our kids' worries as they have plenty of their own, busy launching their sons and daughters into adulthood and trying to figure out how they will ever afford retirement. I kind of wish I had been warned about what to expect, but would I have welcomed the news as a kindness? Likely not. So it is great to have this forum where we can learn from each other!
Peace, Barb

@steveinmontana - This is really frustrating and has always been hard for me to understand. The sciatic nerve runs through the spinal canal, all the way down into our feet. If the nerves in the spine are being compressed, and they're producing low back pain, sciatic pain, calf and foot pain, why on earth don't doctors see the connection with neuropathy! When I had my first MRI in 2021, it showed a "slight disc bulge at L4-L5" that was pressing on a nerve, but because I had "no back pain" at that time, the concensus was that it wasn't causing my neuropathy. Instead, I was told I had "textbook idiopathic peripheral neuropathy" - to me, that just meant no one was willing to get to the bottom of it because they could simply prescribe drugs like Gabapentin and Lyrica. Now, after the recent MRI that shows ALL the nerves in the spinal canal are compressed, to the extent it's now the cauda equina compression, the current spine doctor is saying, "Hmmm ... I wonder is this is all related? You need to see a neurosurgeon right away." SMH!! Well DUH! It's what makes me soooo doubtful of what we're told, and are we just being duped into going along with the system that puts money in their pockets and very little relief for us. Sorry to rant - I wish you well on your journey. I can't stand more than 5-10 minutes at present. Can't take any pain meds either until I get the shot - no anti inflammatories 5 days prior. Ugh - not that they were doing much good anyway. < sigh>

@steveinmontana - Thanks, I'll start taking the LDN after I get the epidural next Thursday. My left foot in particular is driving me crazy with the sharp, stabbing pain and numbness, although I hear it doesn't do anything for the numbness. That's ok with me as long as it helps relieve the pain!

@bjk3 ~ So very true ~ if we had only known what to expect, but then we're all different in what we experience too. I had never had any issues except for the neuropathy, and thought that was going to be my only concern ~ hoping that it didn't creep up into my hands. But I never expected THIS! I just ordered a second rollator/transport chair for upstairs so I can get around and do things. The main rollator is downstairs for use outside as well. We're also having a company come give us a quote next week for a stair lift. As of this past week, I can no longer get up and down easily. In fact, I stand at the bottom of the stairs crying for awhile, and praying for God to help me climb, and He does, but I'm exhausted by the time I get there. We have 16 stairs to a landing, then 3 more to our loft, bedrooms, laundry, etc. At least we have a downstairs bedroom and in-suite bath with a walk-in shower. It came in most handily when my husband was recovering from knee surgery. So I'm hoping that even if I end up having back surgery, the lift will get me upstairs to my own bed. I know the epidural is just a temporary fix, if it works. The condition of my spine is stenosis from L3-L5,S1 - with cauda equina compression which my doctor is extremely worried about. I'm waiting for insurance to approve the referral to the neurosurgeon and then getting in to see him. Thankfully, my husband is seeing the same guy on the 24th, but that still seems a long ways off for what's happening in my spine. My primary said this could be really dangerous and lead to paralysis, so I'm praying it doesn't get to that point and I end up with just anyone operating on me!

@brennankb55 Things seem to be moving mighty fast (your condition, not the medical interventions). I applaud you and your husband for looking into/investing in the additional walking and other aids that help you to safely navigate your living space. These constant accommodations of what we need according to how our bodies change are exactly what I was talking about in not knowing what to expect. I am now the proud owner and user of one walker and one rollator each in the car, one rollator for the garage and yard, and two in the house (mine is ranch style) - one that has a seat and the other, not. How did all this come about???
I've never heard of cauda equine compression - I will look that up. For sure, have that top of the line surgeon do your procedure, not "just anyone". Mine was decompression and fusion of L2 - Sacrum - a 7 hour operation because there were other issues that couldn't be detected before the procedure: the large number of bone spurs and resultant scraping was part of it. The only resultant pain was the healing of the sciatic nerve on my left side. It took weeks and weeks. I was so afraid the damage (and pain) were going to be permanent, but I was assured by the surgeon that they were not, and he was right. He said it would take some time, and he was right about that, too. But sure enough, no sciatic pain!
I think one of the most perplexing & disappointing results of all this (mobility issues due to breaking my hip about 10 months after the back surgery, P.N., inability to plan how pain meds may affect me based on exhaustion, combination with other meds, arthritis sometime as a response to changing weather, etc.) is that I'm just not dependable. Responsible, yes, but not able to be relied upon to be present at group events where there may be expectations as to participation. It bothers me to think it may look like I show up only when I want to.
Well, I don't want this to be a rant without end! I am plenty grateful for the way the Lord has provided through my whole life, given me an unbelievably wonderful family, and continues to take care of things, even as this body declines. Life is good. I believe I'm not the first to make that observation!!
Keep us posted. I am praying for you ~
Barb

@brennankb55 make sure you have the best surgeon for your surgery. I had the same reaction from my internist about paralysis and I’ve been thru two surgeries for spinal stenosis and they both have been successfully done. One in Sarasota and the other at University of Washington Teaching Hospital. Go for it but get the best.

@brennankb55 At least I'm lucky enough to not have that stabbing pain but once in a while for a few seconds! That would be awful if anyone experienced that all the time!

Hey, I've learned that neurosurgeons do back surgeries! I thought they only worked with the brain! And that orthopedic surgeons and neurosurgeon are different and treat back issues differently! I'm seeing someone in neuroscience to have a nerve conduction test next month. I'm going to see if I can have a surgeon look at my MRI and see if a minimally invasive procedure would work for me!