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Avatar universal

My taper update

What a long road this is.  I keep reminding myself that I didn't get to the amount of medication I'm on overnight and I'm not going to get off them overnight.  (For those that don't know, I'm a pain management patient that wants OFF everything in order to reevaluate my pain and claim my life back from all these medications.)  At my most medicated, I was on 75 mcg. Fentanyl every 48 hours, 30 to 45 mg. oxycodone every four hours, 1 mg. Ativan 3 times a day, 800 mg. ibuprofen every 6 hours, 90 mg. Cymbalta a day, 10 mg. Robaxin 3 times a day, .1 mg. clonidine 3 times a day.

Tapered the Fentanyl from 75 to 50 without much trouble.  Then went to 37.5 mcg and had a tough time.  Couldn't get a refill as the pharmacy I have to use only had higher dosages.  Talked to the doctor and we switched to MS Contin 30 mg. twice a day.  I think it will be easier to taper down from that than the Fentanyl.

I've cut back from 9 oxycodone 30 mg a day to about 5 to 6.  I've cut the Ativan to twice a day.  I'm off the Cymbalta entirely.

But I definitely am having withdrawals.  They're not constant but when they hit, it's hard.  I feel like a baby complaining here with all of you going cold turkey.  (I've been in withdrawal a couple of times due to a late mail delivery and had 3 days of withdrawals.  First time I had no idea what was happening as I was told when you take these meds for "true" pain you don't get addicted.  Never told me dependent/addicted you still wind up with withdrawals when you go off.)

I'm having hot and cold sweats, no real appetite, VERY shaky.  I feel like I'm bipolar; one minute okay, the next minute crying, the next minute yelling.  My legs get very weak and I have terrible back pain.  No restless legs though.

I'm trying to be positive and look at how much I've come off but I find myself thinking how much farther I have to go.  (Not an option to go cold turkey.  I've got 4 kids and an 82 year old dad to take care of.  Plus I have a lot of health issues.)

I'm thankful I don't have the mental addiction to this.  I'm humbled by all of you who fight that.  Those that beat it and those that keep trying.

I've heard when you're on chronic pain meds if you switch your meds you can taper down more easily.  I'm thinking of asking them to switch me off the oxycodone to something else.  Not sure if this is true or not.

Right now I'm staying at the 1 mg. Ativan twice a day, 30 mg. MS Contin twice a day, the ibuprofen, the 10 mg. Robaxin.  At my next appointment on 5/2 I'm going to see about going to MS Contin either 15 mg. twice a day or 30 mg. once a day and ask about switching the oxycodone to something else.

Any suggestions are welcome.  I'm managing the withdrawals as best I can.  I'm taking vitamins and staying hydrated.  Trying to be kind to myself when I can.  I'm at least able to drive my kids where they need to go and get dinner on the table.  (Couldn't do anything when I tried to go cold turkey.)

Happy Easter to all who celebrate.  And thanks for the past support.
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Avatar universal
Having terrible joint pain today.  Not sure if it's rebound pain, the weather change or what.  Also feeling a bit shaky and my legs are pretty rubbery.

I have an appointment Monday morning to talk more about this taper.  This week switched over to morphine ER 30 mg. twice a day and 15 mg. morphine every 3 hours for breakthrough pain.  My goal is to be off everything.  Still using my ibuprofen.  I'm also on clonidine, which I understand from here is supposed to help with withdrawals.  I was given it because it's supposed to help with pain and blood pressure.

Not sure what to do at this point.  I KNOW the doctor on Monday is going to suggest staying at this dosage for a bit (or suggest to go back on what I was on before.)  Not going back on what I was on.  My head is clearing finally.  I can think better and I'm feeling my feelings ... not easy after so long being numb.

Thing is, they had given me morphine before.  It didn't work then and it doesn't help now.  (They had also given me Dilaudid at one point.)  Back then, I don't think I was physically dependent on anything.  Neither of those meds ever touched my pain.  Tylenol worked better.

I'm trying to stay the course here.  It's hard but reading about so many other chronic pain patients who either got addicted or just wanted off helps.  There's a lot of shame attached this, whether you're an addict or not.  My sister, who I thought was my best friend, can't or won't try to understand any of it.  It makes me pretty sad.

On the up side, I'm enjoying music again.  I forgot how much it can move me in so many ways.  Caught part of my son's baseball game last night (a single, a double and a home run!!) and part of one today.  It's been a long time since I've gone to a game.  I forgot how much I love watching him play.

I've got a long time left with these withdrawals.  I'm taking it day by day, moment by moment.  I'm trying to not think of how far I still have to go and be happy for how far I've come in a fairly short while.  I've got some hints here on how to deal with bad chronic pain, and I'm going to look into them.  I'm also going to ask on Monday for a procedure they did before that helped a little.  

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Avatar universal
Woke up really early today, 3:30, not feeling great as I missed a dose of medication.  Overall, though, today seems better.  Pain's a bit better.  It may help that it is absolutely gorgeous out.  Still feeling pretty anxious, though.  And the shaky legs.

Goals for today:  again, no yelling or snapping at anyone just because I'm irritable.  Change sheets, a bit of laundry, take my dad on a couple of errands, and have my daughter's birthday party (family party tonight and her friend sleepover party tomorrow night.)

I find it's helpful for me to have a couple of specific goals.  If I feel really lousy, it may just be to get in the shower and dress and wear makeup.  Maybe I'll get lucky today and have an easy day!
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Avatar universal
I was originally up to 9  (prescribed) 30 mg. oxycodone every four hours.  I got myself down to 5 to 6.  Then we switched over to the morphine, 15 mg. every hours (though I'm going more to 4.)  It doesn't work as well for me for pain.  (They had given it to me last year and it didn't help.)  But we thought since the oxycodone wasn't covering the pain anymore and I wanted to get off everything maybe the morphine would help the pain and it would be easier for me to wean down from that than the oxycodone.

It just seems so strange to me the way the withdrawals come and go.  I have way less energy ALL the time, but the rest of it comes and goes.  One minute it's the rebound pain.  Earlier tonight that was fierce.  It's subsided a lot but now every joint is aching.  Still anxious but not as much as earlier.

I got all the kids settled (I think) and now I'm going to take the melatonin and hope to drift off.

The downside to tapering is you can't think, "Oh, a week from now I'll be in a better place."  You know it's going to last as long as the taper and a bit beyond.  But it's what I chose, and I think it's best for me.

Good to hear people who've had a successful taper!!
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Avatar universal
You switched from oxycodone to morphine for Bt pain, if I'm understanding. I'm not sure how much medication your taking or how often, but is it possible the up's and down's are cycling with the dosing? Your first post above said you cut back from 9 times a day to 5-6, is that the same now with the morphine? If they are for bt there fast acting,correct? Are they breakable? The whiplash isn't fun. I tapered for around 2 month's and felt it all the way, just dosing the minimum to not be sick or excruciating. It was a long and painful experience, but I had the pain issue's as well. It isn't for everybody, but that's what I did, and so far so good. The pain seemed worse partially because I was titrating down, but the med's also mess with our minds.
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Avatar universal
I'm just about 24 hours into the switch from the oxycodone to the morphine for BT pain.  Today my goal was to not yell at anyone.  I've been really irritable the past couple of weeks and snapping at everyone for the smallest thing.  I think I've done it.  Didn't even yell at my son when he was supposed to take the trash out and instead left it in the kitchen and the dog got into it and it was everywhere.

I'm curious as to why these withdrawals are so up and down.  You'd think with a taper it wouldn't be bad.  But it's up and down, up and down ... woke up feeling pretty bad but then most of the day wasn't too bad.  Now, though my rebound pain is out of control.  Headaches gone but in it's place is HUGE anxiety.  Feel like I can't breathe.

I'm telling myself this will pass, at least for a bit.  And I know by doing a taper I'm prolonging things.  For right now, I'm trying to watch a movie and get myself to a reasonable time to take some melatonin.  I'm pretty sure I'll sleep for at least 4 or 5 hours.

Thanks to everyone here.  Helps a lot reading other peoples' stories and how they're doing.  At least you feel like you're not the only one feeling miserable :)
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Avatar universal
I think we are our own best advocates for pain.  And I questioned, questioned, questioned, and they tried (and did for a bit) to convince me that it was okay.  It's not.  Sometimes with chronic pain you just need to deal with it.  My surgeon didn't know what to do.  Nine surgeries and nerve damage and RSD ... no more operations so he was done.  Shoved me off on pain management.

Started the morphine last night.  Today hasn't been too bad.  Mostly headache, rubbery legs, and achy.  Nothing compared to real CT withdrawals.  Enough to bother me but not stop me; just slow me down a bit.

I've been taking 800 mg. ibuprofen for years.  Never bothers my stomach.  I'll give up the narcotics for the pain, but I'm never given up the ibuprofen :))
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Avatar universal
Can u tell me what u r tapering from and how u did it? How long ,ect....
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Avatar universal
We are ultimately our own best advocates for our bodies and the final determiner of what goes in. I'm also a chronic pain person but now 60 plus days clean. I was switched all over the place with pain meds till I ended up with oxy, my current dr. wanted me to try Opana. I'm not a chemist but the difference between many of the more common stronger pain meds is mostly semantics. Morphine, morphone, oxy, opana, they all have some type of morphine base [opiod] from opium. I believe methadone is synthetic morphine , of course these are laymen's terms. That being said, it seems in my body they all work about the same when truly equivalent doses are given. Whatever the other ingredients are might change it up or down somewhat. But a person addicted to say oxy, thinking their changing something by going to more norco's really isn't doing anything. If the body is "hooked" on some opiod. I'm one who thinks most doctor's do the best they can with the knowledge they have, which if you ask them [non-pm-dr's] they will tell you their training is minimal in pain management. I think it's valuable to anyone in our circumstance, to look at the conversion charts [available online] from one drug to another. What isn't said is the charts are produced by the manufacturer and the one's i've seen said don't use them in reverse. Ex, if they say our A= there B then that's the dose a dr. give's you, But if your already taking their B, often you'll be way undermedicated if you take our A? Hope that makes sense. Or if your taking our A, you may overdose taking their B. I think they lowball you when you switch, for safety reason's. I started on the morphine and just couldn't stand what it did to my stomach. Also, are you pretty sure the ibuprofen isnt' bothering  your stomach? I tapered as well and felt the wd's the whole way down, but couldn't do the ct, from a high dose. Also, between the rebound pain and my mind telling me I needed more relief, the pain was worse until about a month clean. I still hurt but in fewer places and less severe than the years medicating? Good luck
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Avatar universal
I've made the switch from the oxycodone to the morphine last night.  Woke up today feeling not so great, but I can do this.  Next appointment is Monday morning where we'll review the taper and see where to go.  I have to keep reminding myself I didn't get to these doses overnight and I'm not going to get rid of them overnight.  

The withdrawals for me are different than when I tried to go cold turkey.  Still bad but not as severe.  And they don't seem to hit all at once, which is good for me, I guess.  Woke up with unbelievable stomach cramps.  That lasted only about 20 minutes or a half hour.  Right now the worst of it is the rebound pain.  It is way beyond what I expected.  Everything aches and the hand I had my surgery in is really bad; feels like post-surgical pain with no pain control, throbbing, burning pain.  And my arms and legs are so heavy.

I know since I'm doing a taper I could be dealing with this the whole time I'm doing the taper and a bit beyond.  Took the 800 mg. ibuprofen and some Hyland's Restful Legs, which helped last night.  Hoping the ibuprofen kicks in soon.
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401095 tn?1351391770
good l,uck to you...I hope your doctor is helping u.  Seek support..it helps
Helpful - 0
495284 tn?1333894042
COMMUNITY LEADER
Dont feel like a baby, coming off meds is hard to do.  
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1035252 tn?1427227833
You know I can totally understand...they've switched me to other meds to wean me before (I went off of MS Contin by upping my lortab, then switched from only lortab to tylenol #3 and they weaned me off of that with ativan before) so I think you'll be pleasantly surprised at how switching works.

I'm proud of you...you're sticking to what is a very long difficult process...but you can do it, and soon you'll be breathing a sigh of relief *hugs*
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Avatar universal
Well, still sticking to the taper.  I have an appointment on Monday with the pain clinic.  Earlier in the week, my hand pain was way out of control.  It was as bad as my post-surgical pain before the meds kicked in.  My NP is on vacation until Monday but had told me the other NP or one of the doctors could help if I needed it.

I felt like the withdrawals, though moderate, were manageable, but the increase in pain wasn't.  I didn't want to go back up on the oxycodone.  I had heard in the past that sometimes changing your medication can help the pain.  I told her I didn't want to jeopardize my taper but that the pain was really making me out of my mind.  I felt like the oxycodone was doing nothing.

She didn't want to really interfere with anything the NP has planned and suggested I go back up to my original dose for the breakthrough medication but I was really against doing that.  She decided to switch me over to morphine IR 15 to 30 mg every 4 hours instead of the 30 mg oxycodone.

I'll be switching over to this later today.  I'm hoping it's going to help my pain.  My withdrawals are fairly manageable.  Not sleeping great, hot flashes, VERY irritable and short-tempered, and a bit weepy here and there.  I'm hoping making this switch isn't going to make my withdrawals worse.

I still feel like a baby complaining while I'm doing  a taper when people here go cold turkey and manage.  But I think since I'm "only" dependent, going the taper route is okay.  I'm not tempted to take more than I'm supposed to.  Even when my pain was so bad the other night that I was in tears, I didn't take an extra pill.  Mostly because I feel like A) I'm on such a large amount of medicine already and if that isn't working, why would one extra pill work; and B) I have to deal with the withdrawals and the pain, whether rebound or not, if I'm going to get off these.

And that is my goal.  I want to get off everything so I can see if my pain "resets" itself and possibly I can get by with OTC medication and other non-medicinal things.  So, my anxiety is going up thinking of changing.

I think with me part of my problem is fear of the unknown and also maybe it's a control issue.  I always like to be in control of everything, and somewhere along the line, like with a lot of people, things changed and I was wasn't the one in control anymore.

So, I'm trying not to anticipate the WHAT IF the switch makes me go into terrible withdrawals and just take things a step at a time and deal with things as they occur.
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495284 tn?1333894042
COMMUNITY LEADER
You have nothing to feel guilty about.  You have been upfront and honest with yourself and us.  Getting off narcotics is hard whether you are addicted or dependant.  The feelings are the same.  This is about you and that is what is important.  Both you and Ashelen are doing great and we are glad that you 2 are a part of our forum~~~~~~sara
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1641357 tn?1470495393
You're doing really good!!!!  I think you're going about everything in the right way too, and tapering down until you feel ready to make another change.  That makes it a lot easier I think!  Good luck and keep smiling ;) You're awesome, remember that :)
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Avatar universal
I'm feeling a lot like Ashelen, if you read her post.  I'm getting past my anger at the medical community for allowing me to get to this point.  But I'm also honest with myself that I'm smart enough to know that what they were saying didn't make sense.  This business of "staying ahead of the pain" really only makes sense post-surgery; it doesn't make sense for chronic pain.  I have to remember the pain isn't going to kill me ... it just feels like it.  Actually, it makes me feel like I'm 80 ... but the medication isn't covering it; so why keep on with it.

I don't know if I'll be forever off pain meds.  But I do know I'll never be on the clock with them.  It will be on an as needed basis, not by the clock.  I'm hoping once I'm off my pain will lessen.  I've read so many people who say after being on pain meds, they're actually able to make do with OTC stuff.  Even now, I often feel the ibuprofen works best out of everything.

Thanks for the support.  I often feel guilty when I read what others here go through.  I'm fortunate I don't have the "addiction" part of it.  But it's still hard.

One of the worst things about the medications, for me, was they made me apathetic.  No one would know but I feel like I'm just going through the motions.  I feel flat. No real joy.  Like I said, no one would know BUT I know.  I want to feel my real feelings.

This, along with the chronic pain forum, is a great  help to me.  I read what other people have gone through and think I can get there, too.  I'm just going a bit slower.
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Avatar universal
Hi Mellie. I too wanted to add my support.. You are doing a wonderful job with your taper. do not push too hard ok. all good things take time. let your body adjust before the next step down. the emotions are what gave me the drive to keep up my fight through wd. opiates steal them from us without even realizing it.. it dulls us. cry when you feel like crying. when you feel anger get outside if you can and go for a short walk It is surprising how much this helps with all the symptoms..  at the end of this.  You will be meeting the person you were before the opiates were introduced. It is Awesome !! :) I have found my pain much more manageable off as so many others have.. Have a wonderful Easter.. lesa
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495284 tn?1333894042
COMMUNITY LEADER
Stay the path you are on now.  I wouldnt recommend switching up meds as all that does is confuses your brain for awhile.  Time and patience is the thing now!!  You are feeling everything right now that comes with wd's, hot flashes, mood swings etc.  When you feel like crying, do so, its okay.  These symptoms will go away.  You are doing a fantastic job at this and i am so proud of you~~Happy Easter!!            sara
Helpful - 0
1580085 tn?1400940838
your doing ok, it is a long road but very much worth it, its very hard to taper , it takes a lot of self control and determination, so you should be proud of yourself, especially as you have a family to care for as well, your going in the right direction ,slowly getting lower and lower, it doesnt matter how we do it, as long as it gets done, my best wishes to you,
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