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Chronic Pain Patient - I want MY LIFE BACK!!
  1. #1
    CruellaDeVil48 is offline New Member
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    Default Chronic Pain Patient - I want MY LIFE BACK!!

    Hi Everyone,
    I've been lurking on and off here for years now, it's time to take the plunge into something better.
    I'm a middle aged mother of grown children, grandmother of kids from toddler to teens and a chronic pain patient addicted to pain killers : oxycodone (30 mg x 6-8 a day) and fentanyl (25mcg patch day).
    I have had 3 lumbar spine surgeries over the last 15 years, both knees, both shoulders and right ankle surgery. The ankle surgery left me with CRPS (Chronic Regional Pain Syndrome ), courtesy of the surgeons negligence; he shoved a scope through the nerve bundle in my ankle, severing it and setting off CRPS. If you're not familiar with this monster, go here: www.rsdhope.org accurate information about disorder. In short, my nerves, from head to toe, burn like someone is holding flame to me 24/7. On a good day I feel like I'm severely sunburned. I can't stand to be touched at all, it's like an atomic blast that radiates all through my body.
    I have to have more surgery on my spine, knees and ankle within the next 6 months.
    I have severe degenerative disc disease, (DDD) and severe degenerative joint disease (DJD).
    My lumbar spine has collapsed and will require a level 7, anterior/posterior fusion with bone grafts taken from both hips to stabilize spine.
    I need total knee replacements in both knees and a full reconstruction on my right ankle.
    I'm a train wreck. The DDD & DJD are/have destroyed the discs in my lumbar spine and cartilage in all my joints with load bearing joints taking the brunt of it.
    I am in constant pain and sleep about 3 hours a night in broken spurts, due to pain waking me up.
    I'm sick and tired of living my life from one dose to the next and I want my life back. I'm tired of being in a fog.
    I don't see the point of taking so many meds when they're not helping that much anyway. I may end up with less pain in the end because I won't have the meds building more pain receptors.
    I've tried stopping cold turkey too many times to count with no success. I have several of the suboxone strips that I'd like to try to give me a better chance of making it.
    I've got some support at home and around me, but it's limited. My family doesn't understand what I deal with daily and how hard it is just to get out of bed in the morning. That's hard but I'm focused on detoxing all the garbage out of my system and finding better, natural ways to cope with my pain, (yoga, pilates, exercise, meditation, nutrition, etc)
    I'm extremely busy and work very hard 7 days a week caring for my elderly mother with Alzheimer's who lives with me along with 2 ornery grandsons that Also live with me.
    I've downloaded the COWS withdrawal sheet and know I need to wait until I'm scoring 26+ before starting induction. I've read countless posts from "Robert" about his taper down plan and have saved it so I can put it to work for myself tomorrow afternoon sometime once my COWS score is high enough.

    So, one novel later (sorry all), that's my story.
    I welcome all comments and advice and am really looking forward to a better life without meds.

    Blessings and peace in abundance
    Catrina likes this.

  2. #2
    Catrina is offline Diamond Member
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    Welcome!

    I just finished with my reply to you I lost the whole flippin thing! So I'll try again.

    It seems like you'd be a good candidate for sub therapy. However, I have been around this Forum for a long time and every now and then a new member comes along wanting to do a "quick taper". I can also tell you that they most often aren't successful.

    Robert did post and help hundreds, if not thousands, of people here induct and taper from subs using what we still call "Robert's Sub Taper Plan". Subs are strong, powerful and have a very long half life. They can be a wonderful tool to get you clean and kick start your recovery but they just shouldn't be used haphazardly by either attempting that quick taper or like some people who use them when they run out of their script early to keep them out of withdrawals.

    I applaud you for having the courage to want to get yourself into recovery and posting here was a really good first step. The path of a chronic pain patient, like yourself, is very predictable once opiates are introduced as a part of a treatment. plan Our tolerance increases so either our doctor or we increase the dose or move onto something stronger and in the meantime, they become less and less effective. The problem is, that this cycle doesn't end. So we find ourselves a prisoner to a doctor and a pill bottle and we're still in pain. Great! That doesn't sound like a good deal to me and I ought to know. I lived it too.

    I know that this reply so isn't what you were hoping for as the first response on your thread but I think it would be a mistake to encourage you to give those several strips a whirl. Will you consider getting an appointment with a sub specialist? Go in and appear to be listening to their instructions carefully. Grab your script and then completely ignore everything they've told you and beat cheeks back here so that someone can help you induct at the lowest effective dose.

    These doctors most often prescribe insanely high amounts of sub dosages per day--as much as 24mg or even 32mg/day. I've been around here a long time and have followed countless people inducting with subs and tapering. Rarely have I ever seen anyone who needs more than 4mg/day and often even less than that. Some of these people were on massive amounts of opiates including "H* or methadone. In fact, people sometimes find this site too late and only after they've been on those high doses for years. I've seen them successfully taper and get off the subs with the help of some of our veterans here like Bette or Randy. They all reported feeling BETTER once they got their dose down to 1mg per day. That's how strong subs are. They are unlike regular opiates where if your pain level goes up, you take more pain medication. With subs, if you take more they just might make you sick.

    I hope you stick around and I hope that you will at least consider my advice.

    Peace,

    Cat
    Ricky71 likes this.

  3. #3
    CruellaDeVil48 is offline New Member
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    Hi Cat,

    Thank you so much for your reply.

    Yes, I'm definitely going to stick around, this seems like a great place to get support from those who know the ropes best.
    I can go to a sub specialist if that's the best route to take, I'm all in.
    Should I ask the sub doctor for the lowest possible dose, and should I get pill or strip form? Does it matter? If the sub doctor wants to do higher doses only, do I go with that, or fight for lower doses?
    I'll do whatever it takes to be done with meds and get my life back. I've never been happy about needing meds to control my pain, I've hated every dose. Initially, I convinced myself it was for the best, but as time went on, I knew this wasn't so and have been wanting to be off of them for a very long time but didn't know where to turn for help.
    I called a local sub clinic last week to get some information and they said that most patients start at 24mg.

    My biggest concern is being able to stay on my feet and take care of my mom and family. I can't be down in bed for days/weeks while going through withdrawal, I've got to be able to care for them. Will subs help me do that? Being responsible for so many is what's kept me on meds so long. I can't have my head in the toilet, unable to stand up when they need me.

    I'll do whatever it takes to be off the meds and back to myself again. I feel like a stranger to myself and would like to get to know the real me again.

    Blessings & Peace
    Last edited by Anonymous; 05-29-2016 at 07:56 AM. Reason: spelling

  4. #4
    Catrina is offline Diamond Member
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    Quote Originally Posted by CruellaDeVil48 View Post
    Hi Cat,

    Thank you so much for your reply.

    Yes, I'm definitely going to stick around, this seems like a great place to get support from those who know the ropes best.
    I can go to a sub specialist if that's the best route to take, I'm all in.
    Should I ask the sub doctor for the lowest possible dose, and should I get pill or strip form? Does it matter? If the sub doctor wants to do higher doses only, do I go with that, or fight for lower doses?
    I'll do whatever it takes to be done with meds and get my life back. I've never been happy about needing meds to control my pain, I've hated every dose. Initially, I convinced myself it was for the best, but as time went on, I knew this wasn't so and have been wanting to be off of them for a very long time but didn't know where to turn for help.
    I called a local sub clinic last week to get some information and they said that most patients start at 24mg.

    My biggest concern is being able to stay on my feet and take care of my mom and family. I can't be down in bed for days/weeks while going through withdrawal, I've got to be able to care for them. Will subs help me do that? Being responsible for so many is what's kept me on meds so long. I can't have my head in the toilet, unable to stand up when they need me.

    I'll do whatever it takes to be off the meds and back to myself again. I feel like a stranger to myself and would like to get to know the real me again.

    Blessings & Peace
    24mg is wayyyy too much but that's a pretty typical dose for doctors to prescribe. I'd do whatever I had to do to just get my hands on that script! If you stick with the taper, you'll be done in 8-10 weeks. Sub doctors usually will test your urine at each visit to be sure you're taking the subs as prescribed and they will require that you go in at least once a month for testing and to get your new script.. Given the timeline here, when you go back on month 2, your test will show that you don't have enough sub in your system to be following the doctor's orders. Now that you're aware of that, be proactive and when you do go back on month 2, just tell him/her that you began to taper so that they will expect the low sub in your urine. He/she might tell you that it's a mistake and to up your dose. Again, nod in agreement and just get your refill. Because your taper is only going to take a matter of a couple of months (plus a couple of weeks maybe) and because you are taking only a fraction of what has been prescribed, you'll have plenty to finish and may not even have to go back on Month 3. Does this make sense? As far as the doctor is concerned, your goal is to get as many of the subs as you can so that you will have stockpiled them and won't need the doctor to finish.

    What you can expect is a day or two of withdrawal while you wait to hit that magic number of 26 on the COWS. Once you have inducted, you'll be right as rain. It takes a few hours to slowly induct but once you become stable, you're going to feel fine to keep up with your life. It's not all that unusual to hit a bump in the road during your taper but it's just that. A bump and your plan can be tweaked a little if need be.

    Call on Tuesday (assuming it's a holiday weekend for you?) and get an appointment. Start there. Once you know when you're going to see the doctor, we can help you plan. Just in case he/she insists on giving you your first dose in the office, try to stop all your pain meds a day or two before your appointment You're going to have to do this at some point anyway so you may as well just get the show on the road and hopefully you'll be ready to induct on the day of your appointment. If they do insist on inducting you in the office, you will be given your first high dose--probably 8mg. Don't worry about it. Just do what you're told while you're there and then come back here and others will help you to re-induct at a more reasonable dose.

    Last answer. It doesn't matter if you get the strips or tablets. They act the same way and cutting each strip/tab is the same. Just be sure to know what the dose is of a whole tab/strip so that when others help you, they will know how to do the math and division. Cross that bridge when you get to it. For now, get your appointment and then post and let us know. We'll help you prepare and you'll get a ton of support.

    YAY for you!!

    Peace,

    Cat

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