Here I go again ... another change

[mellie4]

I don't get many responses here, maybe because I'm a pain patient and not a "real addict" by definition.  But I am just as physically dependent as everyone else here, and I want off my pain pills to reassess my pain.  I've come down from a lot of stuff and had bad withdrawals initially and as the taper has gone along, I've had mild to moderate withdrawals.

A couple of weeks ago they switched me to 30 mg. morphine ER in the morning and the same night and then 15 mg. morphine IR every four hours.  The past two weeks I've had a constant headache and feel sick from the morphine and realized from an old journal I found that when they tried in the past I had the same side effects.  When I stopped the oxycodone, I was at 30 to 45 mg every 4 hours (and I had been on 75 mcg. Fentanyl every 48 hours ... went from the Fentanyl to the morphine ER along with the oxycodone.  Then switched the oxycodone for the morphine IR, 15 mg.)  I was afraid then that I'd end up in bad withdrawals because it seemed a big drop.

Now the doctor has decided (and me) that the morphine is not tolerable for me.  But because I still want to taper and get off, she's put me on 10 mg. oxycontin, 2 every morning and 1 at night along with 10 mg. oxycodone every 4 hours.

I'm trying to be positive in my thinking but I just realized that she had me about a month ago at 45 to 60 mg. every 4 hours of the oxycodone and now that's what I'll have in a day.  I'm concerned now that going from the morphine back to the oxycodone will cause withdrawals.

I'm a wimp.  Everyone here has done this CT and I just can't (for physical health reasons as well as trying to care for 4 kids and an elderly dad.)

Yesterday was a killer day for me with pain.  The morphine didn't work well for my pain and all my other stuff (ibuprofen, gels, lidoderm patches wasn't touching it.)  Today has been better with pain probably a 5 out of 10.

I guess I'm just looking for someone to say, "Keep it up."  I know tapering is a long process and I hate that I'm thinking negatively.  I keep trying to tell myself I've come off so much (Fentanyl, Ativan, Cymbalta.)

I don't have much support here.  My family doesn't get it, though I've tried to explain it to them.  My fiancee is a great guy but just thinks, "The doctor knows what she's doing."  But the doctor was the one that had me on way too much medicine to begin with.

Anyway, reading posts here helps a lot when I see what other people go through and make it or even when they relapse and keep trying.  

[mellie4]

Hah, the Turnpike??  I try to avoid that as much as possible.  I do better some days than other days.  The kids help in a lot of ways because they are sooo in the moment.  Everything is about right now.  Being busy is a good thing.  It's when I shut down for the day that my thoughts start going in the wrong directions.  I'm learning to let things go.  Things don't need to be perfect.  Good enough is very often good enough!

And would you mind bringing some good weather?  Sun today but looks like 4 days of rain and cold to come.  Not the right weather for me ... I really want to settle things here and try Arizona.

[dominosarah]

I will meet you both on the turnpike and will show you how to dance like noone is watching~~

[vicki595]

Hey Mary--  I'm going to be in Mass during June. You want to meet me on the turnpike somewhere and I'll show you what living in the moment is???   You CAN do it...believe me.
It's just a recipe: let go a little, laugh more,don't think; just feel,never ever think a negative thought, if you're angry,say so and move on...The most important thing is this: If you don't think about tomorrow or yesterday, you only have today with all it's moments to live in. Once you begin to do this it becomes second nature. I'm not kidding!!!  You can do it...come on...drink the Koolaid!!!  LOL

Stop trying to figure out everything!  It's exhausting!  Now,go take a nap and be good to yourself!

[mellie4]

Thanks to all!  I envy people that stay in the moment and I TRY but I am a huge LEAPER.  Maybe I figure if I think something is he worst, it will never be as bad as I thought.  I have a long-time friend who says if any kind of bad thought enters her head she just "pushes it out."  Wish I could be like that.  I think it's the way we're all wired.

There as a shortage of oxycodone here a few years ago.  I had a friend dying of cancer and they couldn't get any and her husband had to go into Dana Farber to the hospital pharmacy.  It's odd how one pharmacy has it in stock and the other has it backordered for months.  It's probably some racket by the drug manufacturers!!

I am going to stay on the recommended dose for a bit.  I've got my dad and uncle coming home on Sunday for a few days before they go on their next trip and my daughter at college is coming home Monday.  I'll need all my energy to get things ready and help her pack up.  Maybe once she's home I'll have the opportunity to cut back a bit as she can help with just about everything.  (I am hugely blessed with her and all my kids.)

I try to be honest, especially with myself.  And I think God led me to this forum for me to check myself.  Things will become more clear as I taper down as to what's best for me.  But the people on here are really amazing.  Think of all the people who've been helped here.

[dominosarah]

The nice thing about you is your honesty.  That is so refreshing on this forum.  I hope you have a good day today~~~sara

[vicki595]

When the pharmacies are out of pills,I think it's a bad sign but I'm not sure what of!!  LOL

I can relate very well on the tapering thing and the constant withdrawal feeling...I tapered
over 9 months and I wasn't exactly good at it. I needed a ton of help and support. I felt so damn needy it was pathetic!  But, the time went by and much later on I learned so many things.  One of the things Mary: Live in the moment!  I know it's hard with kids,and all the other responsibilities; our minds are in constant turbulence!!  But, it's so much better when you (or I) don't think!!   I'm telling you, if you can learn how to do it...it changes everything!!

What I don't relate to and don't pretend to, is the constant,daily pain. I have a ton of compassion and I know how pain feels but I am reallly lucky and I know it!  It's humbling...
Most days I feel just fine...

I know so many folks and have cared for a gazillion, who are in constant pain all the time. It's exhausting.  My Mom is one of those people. Everyday. Pain. It hurts me...!!!  She takes Tramadol, I hate that, but it really helps her and gives her a higher quality of life. So be it...I can't really imagine what it's like but I understand. Anyway...

Please think very carefully right now...and be patient. You're already talking about trying to cut back the oxycodone to 5mg. You can take 60mg a day as she ordered...so that would be 10mg every 6 hours right?  I need to check that...But, you know what I'm saying.  Get on the meds at the full dose and THEN taper. I think it's better and it's only my opinion but you need or want to do TWO things here: Taper down AND keep your pain at bay!  If I was your dictator,that's what I think I would do!!  What do YOU think?

I'll just share this very quickly...I worked at a private psych hosp. many years ago. A lot of addicts etc..and,also,many PM patients who came in to simply detox from their meds so they could check their true pain level.  I always appreciated what they and their docs were trying to do because it was comfortable,humane,and FAST!   These folks,for the most part,did very well. Yes,they were addicted,but the distinction was that they were in pain and most went back on their meds but at a much lower dose. I guess I'm just trying to say there are many,many people in your shoes and I really appreciate how much you're trying to gain control. I always have.
Hug yourself from me!!  

[medicos]

Whatever we say, sometimes we need the response from others for encouragement....human nature is like dat.

[laurel453]

i remember that one of the "side effects" of abusing the pills was a total overthinking about everything,,,.... my mind was really exhausted, drained because of overthinking and worrying and even imagining things like that nobody paid any attention to me, that i was always left behind....almost paranoid :) Maybe those feelings are also increased a lot becasue of the meds in your case, Mellie cause i can tell you that since i quitted i am relaxed about the people and not worrying about their reactions and so....at all.

[mellie4]

Thanks, Sudie.  I can be a little needy at times :)  I have to learn to stay in the moment and be thankful for the progress I've made.  On the days I feel worse, I make REALLY small goals for myself, like making a phone call, one load of laundry, not yelling or snapping at anyone.

[sudie58]

mary, i do understand how it gets, if your anything like me i do need a pat on the head now and again, you are doing really well, it is a long process and its easy to feel alone and forgotten, but your not!!!  i know sometimes when a post comes up it can be bad timing as to how many replies it gets,but you truly are valued, pain patient or not. i think a lot of the folks here are pain patients,
i truly do feel your doing ok, and you will get there, whatever route you need to take, sending hugs to you, look after yourself, god bless.

[mellie4]

Thanks, Carl.  Initially it amazed me how many pain patients are here.  There's a lot of people who can make pain management work.  I'm hoping I don't have to stay on something.  Only time will tell.  It gives me hope so many people find their pain more tolerable after coming off the narcotics.

[el_em_en_oh]

I lurk on the PM-Forum and respond from time to time on the renal/kidney pain stuff, as that's my bag. And being that I originally came to the SA-Forum from Pain Management (as MANY, MANY of us here have done), I want to welcome you with open arms!

Mellie... we're all here for you and wish you all the best, whatever road you chose to travel down.

Take care & good luck.

Carl

[mellie4]

@dominosarah, just a couple of bad days, I think.  Weather has been awful, which always increases my pain and not getting good sleep makes for a bit of a pity party, I think.  Sun's out today and I definitely have less pain.

@quitnoxys, I'm going to check out the krill oil; it's worth a try.

@vicki, I ALWAYS overthink things!!  It's one of my worst traits.  Initially I was very angry at the doctors over this.  But the truth is, I'm not stupid and in the back of my head I knew their answers just didn't add up.  After so many years of pain, it was nice to have a lot less.  But with every surgery they upped my dose and never lowered it.  And I let them.  I've always used ibuprofen along with my meds and it always helped.  I had a short period when I had to go off them for blood pressure issues and I noticed a huge difference.  But I'm back on it again, and I take 800 mg. every 4 to 6 hours (funny how you don't get dependent on that!)

I'm starting the new meds today.  I didn't want to mix the morphine with the oxy, even though the doctor said it was fine after 4 hours.

What's really strange is the pharmacy.  I have to use Walgreens for my worker's comp.  All three near me were totally out of oxycodone 5 mg.  Apparently there's a shortage around here and CVS has due date for their back orders and are sending people to Walgreens.  One Walgreens told me they'd have them for me later today.  And for the oxycontin, most Walgreens around here order them and mail them to you.  Because I missed the cutoff of 1 pm they told me I wouldn't get it until Tuesday.  But then they called a different Walgreens where they actually dispense it from the store.

So I filled the oxycontin and will pick up the oxycodone today.  I'm hoping since I haven't had any of that for a few weeks, I can stretch it out by either taking only 5 mg. every 4 hours or stretch the hours out.

I know it's not a race for me, but I'm hugely impatient.  And all of the mild to moderate withdrawals and increased pain are worth it.  My head is so much clearer than it was and I've stopped falling asleep once I sit down.  When I was on the Fentanyl I never "felt" anything, except a bit less pain, but once I stopped doing things, I'd nod off.  I feel like I'm getting my life back bit by bit.  Somewhere along the line the narcotics made me very antisocial and I'm not usually like that.  Even though I never drank much or did the party thing, I always enjoyed going out for a few hours and seeing people.  The pills took that away.

I'm wondering if anyone knows how long you need to be off everything before you know what your real pain is?  Days?  Weeks?  Months?  I'm not totally against ever taking anything again.  If I need it, fine.  I just don't want to be on as much or as often.  I was guessing after a month whatever pain I had would be real pain as opposed to narcotic-induced pain?

When I see my doctor on the 24th, we're going to talk about the taper and also about doing another stellate ganglion block or lidocaine infusion (the lidocaine infusions are really strange for me.)

Thanks for all the support ... I was feeling overwhelmed and feeling like I'll be doing this forever.  

[vicki595]

((((Hi Mary))))    Wow,  you're still plugging away !!   I think you underestimate your own strength!!  You are very strong!

Okay...We've been friends a long time now so when I tell you that you're THINKING too much, you (I hope! ) know what I mean. You've been at this awhile,diligent,concerned for yourself,constantly trying to change things up because you want to feel okay with less meds. I know that...it's scary with so much addiction in the family. But,give yourself a break here and try to stop worrying,Honey!    Just keep going down the road. It isn't a race
and don't be so hard on yourself!   Eyes on the prize!!

What you're doing is difficult at best and then to have your meds changed around is yet another shock to your body!  So...how long have you been on this new med regime?
It's going to take several days to adjust and then,after you talk to the doctor, maybe you could stay where you are a little longer until you're really comfortable. You don't have to do this fast. Also,what about Motrin as an adjuvant to the pain med?  Can you take NSAIDS/aspirin?

Now you take 60mg of oxycodone which is about the same as before. Now there's the oxycontin at 30mg per day. Isn't that longer acting for you?  Maybe you're in pain because you just dropped the MS...give it some more time but don't suffer,okay?    

I sure hate that you're in this constant withdrawal...it must be tiresome!!  And,you know,it doesn't matter if you're addicted or dependent.  Not with you!  You've got this now,you know exactly why you take these meds and,from where I'm sitting,you're doing a great job!

Keep checking in and if you want to shoot me a PM, go ahead!!   Please try not to over think things and stay positive!  

xoxo

[dominosarah]

You have had alot of responses from us.  It doesnt matter if you are addicted or dependant.  You still need support getting off the meds and i thought that is what we have done.  I am sorry if it appeared that you were being neglected.........sara

[quitinoxys]

Mary---I just sent you some good info on krill oil and how it helps with nerve and inflammation. Check your inbox.---Rick

[quitinoxys]

Mellie---Don't worry about whether your addicted vs dependent now. You will find that out as only you can know for sure. As far as the pain being worse because of the meds that is entirely true. I found that after I stopped the pain was less. Your brain creates pain when it wants the opiates and thats what is suppose to do. Once you allow your brain to heal it becomes less dependent on the opiates and more on your natural endorphins.

I replied to your message about alternative pain remedies and tried to explain about them so check out your inbox. I am sorry it took so long for a response but I haven't been online for a while. So keep it up you are doing great and I am praying for you. God Bless---Rick

[constantbeauty]

Thanks for answering. I think you and I can relate in a lot of ways.

For the longest time, I thought I was an addict. Then I thought I was dependant. I never took over two pills of Vicodin a day. Never. In fact, I would hardly take two, even though I was prescribed enough each month to be able to take up to six. My doctor always asked me why I never called for refills, since my pain was THAT BAD -- and I kept telling him that my panic gets the best of me, and I was always uneasy about taking pills in the first place. Long story short about me, after about two years of taking less than two [sometimes would only take halves at a time] pills a day, I told my PCP I wanted off the medication, because I didn't want to take them for the rest of my life. He then called me a pill addict. Actually, his exact words were that I was a pill head. I found another doctor a few months later, but before than I went through WD and detox alone, on my own, no medical assistance and no medications prescribed or OTC. I don't believe I mentioned this in my original post on the forums a few days ago when I finally did sign up for this site after reading it for so long -- this doctor has lost his license. Not because of me, but apparently there was a big hooplah about his practice and people complaining about meds they knew nothing about, no education and got dependant upon them. My new doctor tells me over and over again that I did what was best for me, and I was not only honest with him, but also with myself to the point where I got involunatirly dependant upon the pills, even though it was an extremely small dose. It took me such a long time to realize that I wasn't the problem, but I still work on me to this day. Hence why I am here.

Please talk to your doctor or a doctor in general about this. My hat goes off to you for your honesty and composure here. Know that I'm here for you, we all are!

[mellie4]

I have an awesome primary care doctor.  I'm planning on asking her to manage my pain management needs once I come down to a lower dose.  I know she'll get me off them.  The pain clinic doctor just thinks my nerve pain isn't going to get better.  It more than likely won't.  I just figure I'm better off with some pain but less medicine.  The higher doses weren't working anyway.  Somewhere along the line it sort of stopped helping.  There are so many people who say once they get off, they can get by on ibuprofen.  I want to be one of those people.  I think my pain management doc really thinks she's doing the right thing.  And I think she's starting to come around to seeing why I want to come off them and reassess things.

[mellie4]

I'm not really feeling unloved ... maybe a little neglected :)

By definition I'm not an addict.  I'm in pain management and I've never taken more medicine than I am prescribed, never ran out early.  Even when my pain was at it's greatest, I'd never take an extra one.  I'd always call the doctor and figure something out.  But the end result is the same physically.

I WAS always worried about addiction though  My family has a long history of addiction.  My ex-husband was an addict.  I know many, many people that are the least likely you would think would get addicted ... doctors, lawyers; it hits everyone.  I always thought why do I think I can control this when people far more educated than me can't???

In one sense, my worries about addiction kept me in check, I guess.  Personally I think there are different levels of addiction.  My ex, though he drank huge amounts all the time, never had withdrawals when he stopped.  He was miserable but never had physical withdrawals.  My uncle, on the other hand, would get the DTs after a very short time of having no alcohol.

I think for me personally the jury is still out as to whether I'm an addict or dependent.  The real truth will be known when I get off everything totally and see where my head takes me.

[reallyneedhelp76]

I read your first post and i didnt know wht to say but it's been bugging me ever since.  I'm worried that you've lost confidence in your doctor.  If you feel that your doctor is not attentive in your progress or you wishes than change doctors.  You obviously have a want to find out what your real pain is and your doctor should be responsive to that and if not then that doctor is not taking good care of your health.  Try going to another pain management place and talk to those doctors.  I'm afraid that your not getting good medical care when you obviously really need it.  And on this site we all love you and are with you and support you.  I'm in hour 34 of a 30 a day norco problem for back pain and guess what?  I just realized today that 4 advil took the pain away!  SO keeping doing what your doing but please try another doctor because i dont think that yours has your best interest at heart.  I just had to say it!!!

[constantbeauty]

So are you saying you're not an addict and that you're just dependant?

And one should never be made to feel unloved. I'm very sorry for your situation.

[mellie4]

I had a big long response typed and my computer crashed :((

Thanks for your responses.  I just needed a little boost.  I am humbled by every single person on this forum, whether they're pain patients or addicts, whether they've relapsed a thousand times or never ...

Reading this forum opened my eyes and I am forever grateful for that.  Otherwise, I'd have just let them keep upping my dose, even though in the back of my head their answers were never quite good enough for me.  Maybe I was on my way over the line.  I'm not sure.  I only know that far better people than me have got caught in this.  I've seen it in my work in court ... someone starts with a surgery and ends up robbing pharmacies.  The doctors laughed at me when I spoke of addiction.

I think if every single person on the planet had to endure even 15 minutes of severe withdrawal, the world would be a better place.  Doctors would THINK more about prescribing and help educate their patients.  Family and friends would support people instead of thinking that they should just stop.

My family is full of addicts.  I was married to an alcoholic and drug addict.  My brother is nearing his first year of sobriety from alcohol.  My sister is in denial, but she drinks a ton ... every day at least a bottle of wine but because she hasn't been caught thinks she's okay.  Uncles that were alcoholics.  I've seen it and lived with it and I just never wanted that to be me.

I don't crave the pills mentally and that I'm truly grateful for.  But I do wonder about my pain ... is it real?  I know a lot of it is.  But yesterday was a 10 out of 10 and I wondered about my sanity at points.  Pain can do that to you.  Maybe I'll get off everything and after a month say, "I do need to be on something."  But there is no way I needed to be on as much as they had me on.

I'm hoping the doctor is right in her dose adjustment from morphine to oxycodone and oxycontin.  I'd like a couple of weeks of feeling okay before I'm feeling withdrawals.  I think they're magnified with the pain.  I just need to remember pain flares go away.  Sometimes in a day; sometimes a week; sometimes months.  And I just need to remember that if there comes a time where I do feel I need, I can always take it.  It's not necessarily all or nothing.

I know there are people who definitely need to be on medications every day.  Maybe I'm one of them, but I'll never know until I come off everything.  Even by lowering my doses as much as I have, I'm thinking more clearly, my short-term memory is getting better.  My irritability has improved in the past few days.  I'm just finding that it's a very fine line between the narcotics giving you a better quality of life to ruining your life.

Thanks for the help!!  Just reading posts gives me hope.

[Ashelen]

Hey darlin you know I'm on your team all the way..I didn't get a chance to read everything but I hate that you feel unloved. You're doing an amazing thing, and it's SO difficult, and you've come so far....I promise I"ll come back when I'm not watching tv with my husband and talk to you a bit more. *hugs and love*