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Thread: Long term pain management - HELP

  1. #1
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    Unhappy Long term pain management - HELP

    Just wondering if anyone has been on long term opiates and benzodiazepine (valium, klonopin, xanax, etc.) and try to detox? I'm feeling better (hubby is getting the hang of how to get rid of my muscle spasms through massage and pressure) and want to detox. I've only been on them for two and a half months or so and am SOOOO sick. I was on oxycontin for about two or three years once and got very sick getting off of this. But after only a little over two months I didn't expect this much trouble. If anyone has any words of advice, I'm all ears. I do have a doctor's appointment on Thursday, so I'm going to ask him for help.

  2. #2
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    Glad you are going to ask your doctor for help. I have been on benzodiazepines for a long time and despise them. But nothing else seems to help, actually these don't either as I have a lot of break through pain but am determined not to go on any more tablets.

    I did go off them by a quarter of a tablet every three weeks, was so proud of myself but then honestly the pain sent me nearly crazy so I had no choice. I wonder what the long term damage is going to be, and that scares me. I wish you all the luck in the world.

    Lorraine.
    Operated on in 1966, harrington rods inserted from T4 to L3, here in Australia. Fusion of the said vertebrae as well. Problems for the last 14 years with pain.
    Something I feel deeply,"Life is like money,you can spend it anyway you wish, but can only spend it once.

  3. #3
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    hey rohr
    i've gone off oxy...but stayed on hydrocodone...so i didnt have any withdrawal...but i've stopped hydrocodone cold at times for up to 2 weeks (long story) and no withdrawal, just increased back pain! so i dont think my body reacts the same way as i've read on forum...and as a (retired) drug and alcohol counselor, i kinda know what to watch for...

    i truly hope you can find some relief...what did your doctor say at your appt?

    jess

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    We're all very different. A friend of mine had a relatively small back surgery about 6 weeks ago, and was weaned off of morphine very gradually over a 10 day period. The withdrawal was horrible for the last week. He had complete nausea (he barely ate or drank anything), and was sweating and cold. During the withdrawal period, he was still on other strong narcotics, so this wasn't a pain issue. Yet, I've known others who withdrew in a day or two, and were fine.

    --Linda

  5. #5
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    Well, I got off the klonopin by myself. I'm 9 days clean of that stuff, although it seems to work best for my muscle spasms when I have them. I tried to let my 50 mcg fentanyl patch run out. BIG mistake. I wasn't mentally prepared for what ensued. My doctor finally agreed that I needed to do something since I was down to 114# at the visit. He cut my fentanyl down to 25 mcg (then we will either stop it at 2 weeks or go down to 12.5 for 2 weeks then stop) and upped my percocet from every 8 hours to every 6 hours. I'm doing much better than I had thought, although today is day 2 and is a little worse than yesterday in some respects. I'm cold and sweaty all the time. I have some shakiness. Yesterday my nausea went away, as fentanyl causes nausea in me, but returned today but very mild. My skin hurts in the sense of being sunburned all over. Everything that touches me feels like sandpaper. I am having some pain, but I expected that. I am choosing to try to live with the pain with as little meds as possible. I expect that I will have another "pain crisis", as my doctor calls them. I have had them since I was 16 and know they will come again. I think trying to deal with them in a different manner next time will help prevent me from becoming chemically dependent on meds, though. I'm just looking forward to feeling clean. I know that I will always need a percocet rescue now and then, but that is a whole different ballgame than taking stuff everyday because you have to. Thank you for all your kind replies and concern.
    Last edited by rohrer01; 05-30-2010 at 12:04 PM.

  6. #6
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    hey Rohrer....

    Just wanted to deeply commend you on your efforts. I think it takes a lot of courage and honest self examination to go your route. Sounds to me like after your last visit with your scoli doc that shook you up so much, you entered a period of introspection and are so willing to try a different approach. (I feel very proud of you!)

    This must be so hard....I can't even imagine.

    I've also been wanting to mention that every time I read your comments in some of the research threads that I keep envisioning you eventually embarking on some kind of home study scoliosis research project. I am remembering some of your statements about wanting to work with your degree- the difficulty of being in an office or "out there" working. Anyway, since the thought keeps surfacing when I read your insights I thought I should throw it out there. Who knows, some day?!

    Which ever way the wind blows for you, no matter how hard it gets- my hat is off to you....
    Amy
    58 yrs old, diagnosed at 31, never braced
    Measured T-64, L-65 in 2009
    Measured T-57, L-56 in 2010, different doc
    2 lumbar levels spondylolisthesis
    Exercising to correct

  7. #7
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    Quote Originally Posted by foofer View Post
    hey Rohrer....

    Just wanted to deeply commend you on your efforts. I think it takes a lot of courage and honest self examination to go your route. Sounds to me like after your last visit with your scoli doc that shook you up so much, you entered a period of introspection and are so willing to try a different approach. (I feel very proud of you!)

    This must be so hard....I can't even imagine.

    I've also been wanting to mention that every time I read your comments in some of the research threads that I keep envisioning you eventually embarking on some kind of home study scoliosis research project. I am remembering some of your statements about wanting to work with your degree- the difficulty of being in an office or "out there" working. Anyway, since the thought keeps surfacing when I read your insights I thought I should throw it out there. Who knows, some day?!

    Which ever way the wind blows for you, no matter how hard it gets- my hat is off to you....
    Thank you! You are right about introspection. I still have pain. I will always have pain. I do have to admit that I have done this before, but then again it shows my determination to NOT be on drugs. My doctors' hands are tied because they can't DO anything more for me except give me drugs. Everything else has been tried and retried and retried... I'm not going to just curl up and let this disease take me to my grave. That's truly what these medications will do to you if one is not careful. Thanks again, you made my day!!!

  8. #8
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    Quote Originally Posted by rohrer01 View Post
    Well, I got off the klonopin by myself. I'm 9 days clean of that stuff, although it seems to work best for my muscle spasms when I have them. I tried to let my 50 mcg fentanyl patch run out. BIG mistake. I wasn't mentally prepared for what ensued. My doctor finally agreed that I needed to do something since I was down to 114# at the visit. He cut my fentanyl down to 25 mcg (then we will either stop it at 2 weeks or go down to 12.5 for 2 weeks then stop) and upped my percocet from every 8 hours to every 6 hours. I'm doing much better than I had thought, although today is day 2 and is a little worse than yesterday in some respects. I'm cold and sweaty all the time. I have some shakiness. Yesterday my nausea went away, as fentanyl causes nausea in me, but returned today but very mild. My skin hurts in the sense of being sunburned all over. Everything that touches me feels like sandpaper. I am having some pain, but I expected that. I am choosing to try to live with the pain with as little meds as possible. I expect that I will have another "pain crisis", as my doctor calls them. I have had them since I was 16 and know they will come again. I think trying to deal with them in a different manner next time will help prevent me from becoming chemically dependent on meds, though. I'm just looking forward to feeling clean. I know that I will always need a percocet rescue now and then, but that is a whole different ballgame than taking stuff everyday because you have to. Thank you for all your kind replies and concern.
    Incredible, rohrer! Truthfully I tried to write you a helpful reply when you started this thread and I had SO much to say, I had to stop., Judging by my other threads and posts, you can imagine what that meant.

    You've probably seen some of them on the subject of my experiences with narcotics (scared you, I'll bet. Good! ) so you probably know what I mean.

    I am terrified of those fentanyl patches. My neurologist (doubles in this town for my back doc since we don't have any) has been trying to push me into using them for years. I KNOW I'd get hooked. Everyone reacts differently to every med (with some commonalities) but I KNEW I would have been endangered by FENTANYL from the few times it was given to me in inducing general anesthesia or for a spinal. I became very hypomanic.

    Seems to be no in between with the patches. If you're sensitive, you can't break a pill and take less like with Norco. My pharmacist told me frankly he'd "seen more people ruin their lives on Fentanyl than with any other narcotic". I appreciated his frankness. He saw me struggling.

    Can't imagine how you're getting off! I will NOT let them give it to me after surgery no matter what.

    Good girl!

    Amanda
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  9. #9
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    Almost forgot to remind you (certainly hope your doc told you this!) to titrate down very slowly on Klonopin, as it can cause seizures. Sneaky med, that one, and surprisingly hard to get ALL THE WAY off of.

    What was your dose and what is it now?
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  10. #10
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    fentanyl patches never helped me...too little relief, and i always had "break thru" pain...or too much by increasing frequency, and i couldnt function that way...i hated them!
    then the stuff came out about overdoses, deaths, etc, from patches, and they went off market...at least for a while..
    i never bothered with them again...i generally dont like using patches as a medication delivery system anyway....
    i stay on hydrocodone mostly...oxycontin had me down to 87 pounds, it destroyed my appetite so bad! i throw up oral morphine before it could have any effect at all! the hydrocodone allows me to at least stay in the 90's for my weight....

    jess
    Last edited by jrnyc; 06-01-2010 at 12:30 AM.

  11. #11
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    Rorhrer,

    It makes my heart hurt to read about you and so many others suffering constantly and taking all kinds of pain medications.

    If you are in Madison, you are about 100 miles from two different, very experienced scoliosis clinics which can almost certainly give you much of the relief you need -- naturally -- in a couple of sessions. Very often the therapist will suggest quite simple things you can do, like shifting your pelvis back towards midline, its natural position where it probably is not situated now, and teaching you how to sit (and it's different in a car), lie in bed, and how to carry yourself when you walk. We are all posturally out of whack in many ways that we do not realize till a perceptive PT points them out.

    www.scoliosisrehab.com and http://www.sdwpt.com/

    You can read lots of patient and parent impressions of Scoliosis Rehab and Spinal Dynamics on this board. Good luck!

    Below is a full-text article reporting that programs like the ones above can reduce pain in scoliotic adults by an average of 2/3. In a lot of the patients, pain disappeared altogether. This is the main Schroth in-patient clinic in Germany reporting, but I know from my experience and that of others I've talked to that you don't have to go through the whole program to get pain relief.

    http://www.mediafire.com/?1mkdz1hkm5j#1

  12. #12
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    Well, I'm on day four of my step-down to 25mcg of fentanyl. Thankfully I've had the percocet to help me withdraw. I woke up today actually feeling normal again, no withdrawal weird feeling, no cold sweats, no shakiness. Awesome! I took my percocet according to my own step-down schedule. I don't need to add withdrawing from that to the mess I'm already in, although I usually don't get bad symptoms from stopping. I go down on the percocet every 2 days. Tomorrow I will be on an "as needed" basis only, but only up to 2 per day.

    Yes, the problem with fentanyl is that it comes in a patch and you can't "lower" the dose yourself. Breakthrough pain is a given because the body adjusts to the drug being present and you eventually need the drug just to feel normal, which unfortunately takes you back to ground zero as if you weren't even taking it. I'm not afraid to take it post-surgical, though. It doesn't seem to have it's addictive properties that way. It's probably because they give it in one whopping dose to get the pain under control and then keep the pain under control with different medication. That's what they've always done for me anyway. Morphine doesn't help me after surgery or with the severe pain that I get.

    Thanks so much for the links! The third link didn't work for me though. I've been reading about the Scroth method on the other threads. I know I'm a skeptic when it comes to some of their claims. HOWEVER, I KNOW from experience that excercise does reduce pain. So, with that said, if I look into it, that will be my only expectation, since the surgeon won't touch me. My only options are excercise and drugs. Chiropractic apparently messed me up pretty good. I always believed that it was quackery, but my daughter talked me into trying it one more time for pain. I found a really nice chiropractor who was willing to listen to me. It seemed as though things were going along okay, but when the verdict came in, I had progressed. She was mortified, as am I.

    I feel so much better today that I am tempted to just take the patch off tonight and start the step-down sooner. I eventually have to do it anyway. My doctor wants me to do it 2 weeks at a time and I want to do it faster. They told me at the ER last week that it won't kill me, so that's why they wouldn't inpatient me to help me. I have plenty of percocet on hand. I am just in a position where I don't know what to do. I really want off of this stuff NOW. It's so hard to wait until next week when the urge to quit is soooo strong. Any thoughts?

    Thanks again. You all are so thoughtful and HELPful!

  13. #13
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    Quote Originally Posted by Back-out View Post
    Almost forgot to remind you (certainly hope your doc told you this!) to titrate down very slowly on Klonopin, as it can cause seizures. Sneaky med, that one, and surprisingly hard to get ALL THE WAY off of.

    What was your dose and what is it now?
    I know they use Klonopin to treat seizures, but NO ONE ever told me they would cause seizures if I quit abruptly. I have always titrated down on this drug. You can't do it any other way. I titrated down too fast this last time, though. I also found out that it is the MOST addictive of the benzodiazepines. It figures, the one that would work the best for me would have to be the most addictive. I'm 11 days out from that one and not having symptoms anymore. I just HATE being controlled by a drug. If I take something I want it to be because I truly NEED it, not because the drug makes you sick if you don't take it. WOW, what a rollercoaster my life has become! I sure wish these meds weren't addicting or have such terrible side effects!

  14. #14
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    Quote Originally Posted by jrnyc View Post
    fentanyl patches never helped me...too little relief, and i always had "break thru" pain...or too much by increasing frequency, and i couldnt function that way...i hated them!
    then the stuff came out about overdoses, deaths, etc, from patches, and they went off market...at least for a while..
    i never bothered with them again...i generally dont like using patches as a medication delivery system anyway....
    i stay on hydrocodone mostly...oxycontin had me down to 87 pounds, it destroyed my appetite so bad! i throw up oral morphine before it could have any effect at all! the hydrocodone allows me to at least stay in the 90's for my weight....

    jess
    Wow, you must be a really small person. I'm a bigger girl and am 5' 7" WITH my scoliosis, so they told me that I would have been between 5' 9" to 5' 10" if I didn't have scoliosis. I can't take hydrocodone anymore. I took so much of it about 10 years ago (it was my main rescue drug) that I developed an allergy to it. It really stinks, too. They can "call in" a prescription for hydrocodone and give you refills. Oxycodone is more highly controlled and I have to go in to get a written Rx. That makes it really difficult if I run out and end up in crisis on a weekend or at night when I can't go in and see my doctor. That's why I end up in the ER. I've had him call in tylenol #4, but that makes me loopy without the pain killing effect. Being loopy and still in pain seemed to only add insult to injury. When my pain gets really bad, NO oral medications seem to do anything. They are literally like I didn't even take anything, it's so very frustrating! I really want to be completely drug free. My pain specialist told me that was a noble goal, but unlikely due to the amount of pathology I have. Well, if I have so much pathology, why won't the spine doc fix it? Arghhhhh!!!!! But now, after getting off the meds, I'm afraid to have ANY surgery again because I know meds are involved.

    Thanks for listening to me vent.

  15. #15
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    Quote Originally Posted by rohrer01 View Post
    I know they use Klonopin to treat seizures, but NO ONE ever told me they would cause seizures if I quit abruptly. I have always titrated down on this drug. You can't do it any other way. I titrated down too fast this last time, though. I also found out that it is the MOST addictive of the benzodiazepines. It figures, the one that would work the best for me would have to be the most addictive. I'm 11 days out from that one and not having symptoms anymore. I just HATE being controlled by a drug. If I take something I want it to be because I truly NEED it, not because the drug makes you sick if you don't take it. WOW, what a rollercoaster my life has become! I sure wish these meds weren't addicting or have such terrible side effects!
    Oh, yes indeed they can cause seizures. And doesn't this fit from the whole notion of rebound effects?

    This is more usual when people drop levels abruptly, especially from a high dose, but if we don't know our seizure thresh-hold, we might find out the hard way, it's more delicately poised than we knew.

    As I mentioned elsewhere, I know of someone who died because of resulting brain damage. It was a few years out from her playing with her dose (she "was tired of being on so many meds!") butt she went into status epilepticus (uncontrollable seizure). In some unknown fashion, this eventually led to her death.

    It's VERY hard to wean all the way off. I've been taking it for twenty years, only one mg a day now before bed, and rarely when I feel very jazzed up. I feel sure it's making my thinking cloudier, ,though, by hang over. (And not sure it's helping me sleep!). Such a long onset time!

    BTW one thing universally recommended in helping detox from narcotics, was (temporarily) anyhow to resort to as many benzos as needed. Doing both simultaneously probably made it much harder for you.

    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. Their drug of choice. (hydrocodone seems to be very popular, maybe because it’s the easiest to take and continue to function re sleepiness) Note I do not think I read of anyone taking as much as me, but I worried a lot about those anywhere near, because i was the only one who was taking it pure (without Tylenol(.

    Did you ever wonder why there is NO pure form marketed? Heh, that certainly is Darwinian, isn't it? They're willing to market it as a class three narcotic as long as they're killing abusers! Many worried tremendously about their livers.
    Last edited by Back-out; 06-01-2010 at 07:47 PM.
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

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