Billye:

I'll make is simple for ya!!!

Pain stinks!!! No doubt about that.

It also changes your personality and makes you go from a loving, sweet person, that you probably are, to a grouch. Can't help it. That's what happens to people when they are in pain.

AND YOU ARE IN PAIN!!!!!! Not some headachy, little elbow, arm achy, kind of pain!

YOU ARE IN PAIN!!!!

The kind that needs to be addressed.

So get crackin!!! Go to the doctor, and start on a dose that you can live with.

You have no idea if you can be maintained on this dose or if you will someday need to increase it. I've read on these boards where many people have stayed on that one dose and they have had their lives back.

Just remember that pain meds DO affect the digestive tract.

And if you are on pain meds, eat more fibre and have some Dulcolax in the house.

It's a lousy subject to touch upon, I know, but Alan lived with it for a few years when he was on the fentanyl patch, and believe me, when you have your pain taken away, you can LIVE!!

You deserve to be happy and to be pain -free.

We love you.

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

The morphine pumbs are fine,i fough my Dr. on taking Morphine for 3 yrs.
I don't know why,nurse thing ,silly your in bad pain ,they would start
with morphine er tab.30 mg. it not going to know you for a loop,like
after sugery. But it does help,i'm on 30 mg 3 times a day. now but
that's enough. She said i could use Fentanyl transdsdermal or like mrsd
said the l patch and cut it up small. I am finally amazed that so many
Drs. are taking pain more serious. Billlye it doesn't havee to last for
a long time..When I finally said ok i'll try it what a relieef on her face.

I aways felt if you found yourself angry,you got to speak up to your
dr. and tell him-or-her the truth this is bad not only am I in pain,I find
myself angry at those who love me...Tell he -she- it the way you told us
that was brave and that's wonderfull ,but that kind of pain is mot,
I sure he already knows but at the same time he can't guess..A dear
one has let me know that,if you can make it to Mayo in a strom.
You can tell your Dr. this is just to much pain right now.. You
been hurting for some time now. Good luck and hugs Sue

Sue,
Typing so much when you are in pain yourself is just so sweet of you. I have a thing about pain meds. I don't want to become "addicted" to them. Around here you run into so much trouble trying to find someone who will prescribe them. And I do understand why.

But I also don't want to get caught in a pinch needing a medicine that is reasonable for me and be unable to get it. I found myself in this position years ago before my knee replacements and let me tell you, withdrawal without help is it's own kind of *ell.

Mentally..it's just something I'm having trouble doing again. I have to drive 50 miles to just see a pain specialist. Scheduling appointments and mail order prescriptions creates all kind of issues with my other medicines. They won't refill some of them until you are down to the last few pills. And just this last week, we discovered the special mail order pharmacy didn't receive my Humira prescription. So we are up against the wire with getting a new prescription, getting it mailed, their processing and special shipping for a medicine that has to be refrigerated from them to us.

That's one of the reasons I was looking for info for a pump. But I really don't know what all is involved with a pump. I guess I need to google and research. It might make me change my mind.

Well enough about this subject. We'll move on to something else.

Billye

billye, have you done a search on nt for the pain pump or the scs?

ok I understand,no way would my pharmacist or Neuro would let you mail a
cripth for morphine or fantanyl. But i'm closer to the neuro then your pt.
Bob and I have each other's power of attorney.Which means he can
pick up the morphinescrip,if i call it in leave my name birthdate leave her the dr.
name and my phone no. But she has been off for 3 months so the 2 Drs. that are taking her place are told by her nurse practioneror replacement drs. i have called..My Neuro teaches 3 days a week and see's patient's only 2 times a week..Most patien't should have power of attorney drawn up by lawyer put in hospital file..If your husband has passed away or no children,
or living relatives,you may have trouble getting what you want done..Living
wills last only so long in some states check with your hospital.
I have never been given enough morphine where i became addicted but it
took me 3 yrs. to believe that. I call 2 days ahead no sooner than that..
I get sick and have taken compazene with morphine if i have major surgery.

If you think a pump would work,please ask your pt dr. how they work any
infections so on don't blame you,everything that works on some well
we are all different. Bob except for sugery rarly takes more then Darvoct.
But when he fell and broke that bone in pelvis area he told me he hurt so
bad,i mean he could't sit had to lay down or stand up,but would scream
trying to sit down trying to go bathroom. I finally got him in pt hospital,
because I couldn't help him for the 3 months for it to heal..And we all
heal so different...I feel so sorry for you,my younger son can only take
1 kind of pain pill or he get's so sick. I would talk to him about a pump
just talk because it's always been looked after by home heath nurse.
Unless they changed that as well.

Karen my nurse called Dr on call can eat some baby food,sorry to break in.
Luck to you Billye my heart breaks for you...Hugs and we do love you. Sue
Going to watch movie with Bob than Superbowl.

I too was wondering about the scs for you? That is what they wanted for me. I am not sure if it would work for your issues. Sending many thoughts your way and I am sorry.