have you read Jane Brody in the New York Times? She is their longtime health writer and has been doing a series on Pain management (and the lack thereof in this country). I remember when she found out that hydrocodone is not for pain management but only for breakthrough pain, after she had been in tears over the pain after her knee surgery. Sufficient pain relief has been proven to speed healing, and increase the level of healing. You just don't want to ignore it. My rare and completely disabling condition can only be caused by ignoring pain. You can find some really wise, down to earth articles by her at nytimes.com. Try searching on "Jane Brody pain management". You can get opiates that can probably make you MORE functional, not drugged out.
Good luck,
Jane

Oh, forgot to mention that when Alan was on the Fentanyl patch, he took vicodin for break through pain.

He still went to work, and drove the car. The only change was that he HAD LITTLE OR NO PAIN!!

This was a long time ago, and I realize you have a lot going on that is much different than where Alan is at present.

But I was there 7 years ago when Alan was screaming at the top of his lungs at 2 a.m. because of his neuropathy pain. And when he put on that patch, well, he was a different human being. I think it saved his sanity. I really do.

But we each have to find our own way to pain relief.

I do hope you get to yours.

Love, mel

Bilye,

Can I make one more suggestion and it is not about pain meds. I just want to address the "sit pain".

I have posted before that I have lumbar/sacral issues and also evidently fractured my coccyx at one time in my life; just never knew I did it.

I have multiple issues as well as the burning sensations. It took me a year to get some things figured out. But have you tried or even thought about pelvic floor physical therapy? The therapists are specialized so they are hard to find. But my Urogyn had a list of therapists he uses. Between the lumbar/sacral pain and the hip, ankle and foot pain, I didn't know what to do and ALMOST did NOT follow through with this.

On my first visit, and no lie, I was driving there in tears. I almost turned around and went back home. Anyway, I am GLAD I went! I can't get into too many details here because it is graphic but after 3 sessions I could sit straight down without ANY pain. With ongoing sessions she started to do external work; ultrasound, etc, etc. When my 6 weeks was up, I had no pain whatsoever in my backside, pelvis, coccyx; she even somehow fixed my SI joint.

For me it was NOT painful. It was blessed relief...and for about a year. They (my Urogyn and my Spinal PM) both believe this may be a chronic thing. So, I have started the therapy back up again because the pain started in again. I just had the first session the other day and am already feeling some relief. Once you begin to understand how this all ties in and trust me, very, very complex you will come to understand how it all relates.

I still have the issues with the spine of course and ongoing nerve problems and burning but I am just throwing this out there because, I for one, did NOT believe it would help. I was dead wrong! I am completely amazed at how much relief I got. I still take meds of course for other issues but I can keep them low.

Oh, and I also had a coccxy injection which helped a bit. But this PT was something else! Please just give it some consideration or talk to the docs and see if it might not help.

I understand how the pelvic floor ties in with everything. We are starting to explore some things in this area next week. I'm having a Urodynamic Test. This will tell us some things about the bladder area. And more that is too graphic to put here.

Mayo told us I have pelvic floor dysfunction that is affecting my colon. I was to return for two weeks of therapy. My husband's back then needed surgery and my return is history. Ancient history now. I won't be going back. He couldn't tolerate the trip.

We are re-visiting some of the same area in testing that I had done a year ago. Perhaps it will work out that I get some relief from some of it.

I thank you for your long post. I know that sitting to do it wasn't easy. And I do appreciate it so much.

Billye