Long term pain management - HELP

[jrnyc]

hey rohr
so sorry to hear of all the grief you've been through with meds and all! vent any time..
the allergy..what a rotten situation...but i agree about the goal of being off all meds...and i'd rather be on meds than be in pain! i watched plenty of addicts while a counselor...in and outpatient...and i know very well what it involves...but i am not addicted to this stuff...as i said, it doesnt even kill the pain...just takes the edge off...i hate morphine and dont like oxycontin...so there isnt anything stronger i'm interested in...

does your pain doctor have any ideas of anything that could help you? have there been no injections that worked well enough? i cant remember if you said anything about injections or not...i am getting another one june 10th when i see my pain doctor in NYC...he wants to address the sciatica pain that has worsened lately...i dont expect much, so wont be disappointed, as none of the injections for lumbar have helped much...

jess

[rohrer01]

does your pain doctor have any ideas of anything that could help you? have there been no injections that worked well enough? i cant remember if you said anything about injections or not...i am getting another one june 10th when i see my pain doctor in NYC...he wants to address the sciatica pain that has worsened lately...i dont expect much, so wont be disappointed, as none of the injections for lumbar have helped much...

jess

Hi, again. My pain doc wanted to put in an intrathecal morphine pump. My pain is mostly isolated to my neck and upper spine now, although not that bad that I can't tolerate it. I had an epidural steroid injection for my L5/S1 disc that has degenerative disc disease and bulging. It has all but eliminated my lower back pain. The thing is, about the intrathecal thing, is it is still drugs. It still gets into your system. It would be nice if it all stayed in the spine, but it doesn't. Besides, according to the hospital's protocol I don't even qualify. The spine has to be stable, which mine is not. Surgery on the spine can not be an option, well surgery is always an option when the time comes. Therefore I don't even know why he was trying to push this treatment on me. He seemed soooo determined that this was what was best for me, and I'm not at that level, ...yet.

So I decided to try going off the patch tonight. Wish me well. What made my mind up was that I was sitting in the bathtub and had taken my patch off and layed it face up on the edge of the tub. Along comes this spider out of nowhere dropping down right toward my patch. As soon as his little legs touched it, the little spider instantly recoiled as if it were on fire! I guess if the arachnid world can see that it is poison, I shouldn't put another one on. It might be silly, but that's my story and I'm stickin' to it! If I wuss out, I will let you all know.

Take care

P.S. If you don't hear from me for a couple of days, it's because I'm feeling too crummy to get on the computer.

[Back-out]

Along comes this spider out of nowhere dropping down right toward my patch. As soon as his little legs touched it, the little spider instantly recoiled as if it were on fire! I guess if the arachnid world can see that it is poison, I shouldn't put another one on. It might be silly, but that's my story and I'm stickin' to it! If I wuss out, I will let you all know.

Little Miss Muffit. Great story!! (Didn't realize the patches come on and off!)
One of the sustaining things about detox is that when you formalize it, you start to get such a great feeling of achievement, it goes a long way to act against the crummies (which are SO MANY)

Day by day, there's a countdown and each one is a great achievement - just surviving! Right? Milk t for all it's worth. Every minute you are NOT taking that crap, you are doing something great for yourself (and one that takes tremendous fortitude)

Don't let yourself forget it.

P.S. If you don't hear from me for a couple of days, it's because I'm feeling too crummy to get on the computer.

I sounderstand!

Hoping it might help (and thinking it might have gotten lost in a sprawling post) I'm going to quote from myself - the part of the post, I think may help.

Me, repeat:

FWIW there are online detox support sites for narcotics users/abusers. By the time I got in full swing I was too out of it to post there but reading other people's struggles was immensely helpful (and helped me prepare. Like having anti--diarrheals on hand! ) They were almost universally people who'd begin with them, because of chronic pain and that's what I've heard from rehab professionals too.

While you're engaged in your challenging job, you might get even more support on such sites than here. I felt so sorry for them! And angry with doctors who hadn't properly educated them when first prescribing.

One day I had the AHA! of realizing there must be many more people like me. The inevitability of tolerance combined with the fact of intractable pain, made it all too clear. So I looked online, Googling combinations of “chronic pain” “tolerance” “detox” and found many, many, many sites. Some go by specific med names.

Might be worth a shot...

Going off the patch is hair-raising hard. I thought you were going to titrate down from 25 to 12.5 mg first. Maybe that's what you meant.

[jrnyc]

hey rohr
oh, right...now i remember that catheter pump implant thing...kinda didnt like the idea of that....but if an individual epidural cortisone type injection has helped you, can you stick to occasional injections by the pain doctor, whether epidural or nerve ablation or facet block, or whatever...if it helps?

hope another injection will be tried for you to help relieve some of the pain...
and as i said, i kinda dont like patches for delivery systems, so it was great when i quit fentanyl!!

jess

[foofer]

So I decided to try going off the patch tonight. Wish me well. What made my mind up was that I was sitting in the bathtub and had taken my patch off and layed it face up on the edge of the tub. Along comes this spider out of nowhere dropping down right toward my patch. As soon as his little legs touched it, the little spider instantly recoiled as if it were on fire! I guess if the arachnid world can see that it is poison, I shouldn't put another one on. It might be silly, but that's my story and I'm stickin' to it! If I wuss out, I will let you all know.

Take care

P.S. If you don't hear from me for a couple of days, it's because I'm feeling too crummy to get on the computer.

Again, Rohrer,
Thumbs up, hats off to you!

That is a great story...if one was ever looking for a "sign". woo

[rohrer01]

Just letting everyone know that I've gone ahead with my plan. I am now fentanyl free for 14 hours. That might sound silly, but the drug leaves your system VERY quickly once the patch is removed. I was in full blown withdrawal last night by 11:00pm. Thank goodness that I have percocet to carry me through this, although I would do it even if I didn't, but it makes it much easier. I get chest pain and difficulty breathing when detox first starts. That is freaky because I have a heart arrythmia, which alway acts up, too. I am past that. I have to admit that I "accidentally" fell asleep which was a good thing, but woke up starting to have a panic attack because of how wretched I felt. Then I started to think to myself, this is just the poison leaving my body, give it time, this is the "real" effect of the poison, let it out. Once I started thinking thoughts like that I settled right down and let it happen. The chills and sweats are terrible. I was able to hold off the percocet until 1:30am, and have been taking it every 4 hours. As I feel better I will lower the dose until I'm not on it any more either. That will be my last drug to go. I have conquered 3 out of 4 now. I do feel really great about that.

Drugs gone:
klonopin
fentanyl
soma

To go:
percocet - although I will retain this as my "rescue".

Thanks for all the support!

P.S. I have looked on other boards for fentanyl detox. Quite frankly it scared the crap out of me! I haven't experience anything as horrible as some of those people out there. My doctor was kind enough to give me as many step-downs as I want. I chose not to drag it out and go the 12.5mcg route. I figured if I took a drop of 25mcg once, I could do it again.

[rohrer01]

Little Miss Muffit. Great story!! (Didn't realize the patches come on and off!)

The patch doesn't go on and off. Once you take one off, you have to put a new one back on. They are designed to lose their stickiness.

[rohrer01]

hey rohr
oh, right...now i remember that catheter pump implant thing...kinda didnt like the idea of that....but if an individual epidural cortisone type injection has helped you, can you stick to occasional injections by the pain doctor, whether epidural or nerve ablation or facet block, or whatever...if it helps?

hope another injection will be tried for you to help relieve some of the pain...
and as i said, i kinda dont like patches for delivery systems, so it was great when i quit fentanyl!!

jess

I will find out on the 15th what they intend to do about my neck and upper back pain. It's primarily in my neck. I think getting occasional injections are better than a pump, as long as they keep working.

[jrnyc]

i think that is a better and safer idea, rohr..

so sorry to hear of the tough time you've had with going off stuff...it makes me so grateful that, for whatever reason, my body goes off meds... cold... without notice...and i was ignorant of what could happen, so just merrily went along, blissfully unaware of the bad things that could have occurred!

i hope the docs hit on a good injection for you that will bring you at least some relief!

jess

[Karen Ocker]

it is dangerous to detox self. After surgery I tried to cut back on the fentanyl patch too soon--deadly depression followed. My pain doc prescribed Paxil-helpful for pain and depression, continued using Neurontin for 3 months, Tylenol Arthritis up to 4gm/day, lido patch and Tens machine. I was opiate free 3 months after surgery with a reasonable comfort level. After 4 months started aleve while continuing the Tylenol. Pain must be treated and opiates are not always the answer.

Went back to Pilates-private instructor after 6 months with great help.

[jrnyc]

hey Karen
if there is no addiction, it is not detoxing...i worked for over 10 years in alcohol and drug addiction field...both detox and rehab...i know the signs and symptoms...and i know denial is not a river in Egypt!
i take meds as needed...most days i need them, but some days, for example, after injections, i may not...and am so grateful...the worst days are the cold and damp ones...but at a certain point, i stop taking the meds...and get in the shower! at a certain point of pain, hydrocodone doesnt do it...i have morphine and oxycontin, but dont like either...one makes me sick to my stomach, the other exhausts me! so there are days where i am in the shower, in bed, back in the shower, in bed, then on a heating pad!
i have never gone beyond 8 pills a day, most days not beyond 6 pills...my happiest days are the ones when i need nothing! and i hated the fentanyl...happy to stop that...wasnt on patches for long...didnt like dealing with all the "break thru pain"!!
just a note...Paxil can be VERY tough to get off...for anyone on it for any length of time...i dont call it detoxing..it is an antidepressant..but reports of tough times with it are rampant...

jess

[Back-out]

jrnyc

Paxil can be VERY tough to get off...for anyone on it for any length of time...i dont call it detoxing..it is an antidepressant..but reports of tough times with it are rampant...

Just goes to show how different every one is with drug metabolism.

I was on Paxil for two years. Didn't help at all,, but the inertia was so great I didn't get off. Finally call from old boyfriend goosed me into action, as I suddenly had to acknowledge I'd put on 30+ lbs since I'd seen him.

I went off it in a single day and had absolutely no side effects!

The weight took a while to unload though - it was 50 lbs in all from the very start. Ouf! What a drag. Hated the med. "Through a glass darkly" and then some...(But I was imperturbable! )

Not sure what you mean by addiction, Jess. I don't consider I was addicted to hydrocodone, per se. Even at the highest dose I was on, I didn't take it to get high (if I had, I'd have chosen a different medicine!) FWIW I use the term "detox" loosely. Does it have to be related to an addiction? I see it as meaning getting rid of the toxic effects on the body (though the changes in brain chemistry may never be fully undone )

The tolerance was inexorable, built in. I continued because stopping would have felt so awful. I was upping the dose long after I'd hit a ceiling on therapeutic effects, but I didn't realize that until later.

Self detox may be dangerous, Karen, but some of us have no choice. It's very expensive and not all insurance covers it.

Hang in there, rohrer!! Sometimes it gets harder when the exhilaration of the first clean days, wears off. Of course, you still have Percocet to get through. That one can be a toughie. It was my first detox and oh yes, I WAS depressed. Luckily, I had expected it, and kept repeating my mantras:

"It's just chemical" and "It's just temporary".

[jrnyc]

i have been in the field of addiction since 1997...i know what "addiction" means...people throw the terms "addiction" and "detox" around too loosely, in my opinion...
i have not upped my dose of hydrocodone in 3 years, since i know that at a certain point, it is useless, and doesnt help at all, at least, not for me..
while some may build a tolerance to the pain meds, it doesnt equal "addiction"...
and "dependence" and "addiction" are also not identical....

jess

[rohrer01]

I wouldn't say that I'm addicted. I am chemically dependent to feel normal. I have built a tolerance to the medication. I am therefor detoxing from my chemical dependency. I'm not doing it alone. I am under a physicians care. I just upped the game a little, as I am impatient and want this stuff OUT of my system. I figured I took a 25mcg drop in fentanyl once, then felt "normal" after the third day (day four), so I did it again. I must say that today is day 3 and I'm about pulling my hair out. I just want to crawl out of my skin. I have this nervy sensation, like a whacked funny bone, in all of my nerve fibers. It's horrible. I think that my doc half expected me to do this. He knows me well enough. He made sure to give me more percocet than I needed to do it in two weeks.

Take Care,
Rohrer01

[mbeckoff]

You are in my thoughts and my prayers

Hope you can do it

Melissa