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Oxycodone 30/mg daily for 2 and 1/2 years
  1. #1
    skittles44 is offline New Member
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    Default Oxycodone 30/mg daily for 2 and 1/2 years

    I wanted to share my experience and story, with the hope of helping others and being able to voice my opinion and hopefully gain support and insight from all of you!
    I was diagnosed with Levator Ani Syndrome, which is basically extremely tight pelvic floor muscles which makes sitting very painful. It is a fairly rare condition and I've tried every single approach you could ever dream of to help relieve my pain and nothing worked permanently. I still have this condition and may have it for the rest of my life......it is so annoying.
    Anyway, my doctor started me on 10mg/325 Oxycodone 3 times a day in the summer of 2011 and it was relief at last. I didn't have to deal with this annoying pain all day long. I never abused the medication, but I enjoyed the euphoric feeling along with the pain relief. I followed all doctor's orders and never exceeded my 3 pills a day.
    Starting in July 2013, I started to cut back on my use and only took 2 a day. In September and October I only took 1 or 2 a day. For the last 2 weeks of October I only took 1 pill every evening. It was at this point that I started to experience some discomfort and withdrawals. I started to feel a lot of anxiety and a really, really dark, deep depression. I felt like I was taking the pill at night, which relieved the pain for the evening, but the next morning I started withdrawal symptoms. At this point, I only felt "normal" when I took the pill nightly, both physically and emotionally. I've dealt with anxiety and depression my whole life, but nothing like this.
    I finally made the decision on October 31st, 2013 to stop taking Oxycodone altogether and handed my 120 pills over to wife and told her to hide them. I went to my doctor and told her I would be stopping the medication and was going to try to control the pain with OTC pills. While the OTC pills don't cut the pain like my Oxy's, I figured it was worth a shot. I couldn't deal with the anxiety and depression that only 1 10mg Oxycodone was causing me everyday. I just couldn't believe that this small amount could have this sort of impact.
    Anyways, I'm at day 2, almost day 3 of being Oxycodone free. I feel numb and tired all the time and yet have trouble getting to sleep at night. I haven't experienced much as far as withdrawal symptoms, besides RLS and being depressed.
    I will lay low tomorrow and then I need to start getting plugged into things again. I've been sleeping 14 hours a day for past 3 weeks, mainly because of the depression. I will say that only a couple days off, I am not feeling like jumping up and down, but I do feel slightly better each day.
    Since I have a legitimate pain condition, I'm taking this journey one day at a time, but I figured I owed it to myself and family to try to deal with the pain with OTC meds. I'm not sure if this will work, but I'm praying that I can remain off the medication for the long haul.
    I know many of you may say, "but you are not abusing them", but I just feel like giving this a shot. I've felt some guilt over my Oxycodone use, because I would religiously take it 3 times a day whether I had the pain or not, because I liked the way it made my feel. My pain is constant, but lessens when I stand up, so some days were better than others.
    I guess my question, am I making a good decision to get off these meds even though I've used them responsibly and have a legitimate reason to do so? I guess I'm thinking, maybe my pain can be managed more conservatively, and I would be better off in the long run. Any and all opinions are welcomed. Thanks for your support and input.

  2. #2
    melindau is offline Member
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    Hi Skittles
    Does your pain from your LAS ever go away! I know most people only have flair ups a few times a month! But it sounds like your in pain all the time.I think your doing the right thing by getting off the narcotics for one they can flair up your symptoms and make it worse.and if you like the way you feel on them could be a sign of trouble that you dont need!you have everything to gain by taking a break from your pills and seeing how you feel off of them.The depression will go away and you will get some energy back in a few days.I did a long taper on of my pain pills.you really sound like you got it together.I wish some of the other treatments would have worked for you,it is no fun to have chronic pain...
    Stay Strong and let us know who we can help...
    Melinda

  3. #3
    skittles44 is offline New Member
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    Melinda,
    Thanks so much for the kind words and the support. Unfortunately, no the pain never goes away. If I'm sitting it is the worst, if I'm standing it feels like something is stuck up inside you (sounds like fun, huh?).
    I guess what I struggle with is the fact that I never abused the meds and have been in more pain since stopping. I'm currently taking 800mg Ibuprofen for the pain, but it certainly doesn't cut through the pain like before with the percs. I'm at 72 hours clean right now, and while I feel good about that, I don't feel great about dealing with this annoying pain. But your are right, I have nothing to lose from trying to see how I feel off of them.
    I will say my anxiety level (which I am currently out of work for) has decreased tremendously since quitting the 10mg's a day dose. I still haven't had much in the way of withdrawals, except for minor things. I think this is due to my successful taper for the past few months.
    I also quit using tobacco at the same time, I figured if I'm going to suffer, I should do it all at once!

  4. #4
    melindau is offline Member
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    UGH! I watched my Daughter go thru ovarian cysts a few months ago it was awful she had seen me go thru terrible W/D from my addiction to pain pills so she wanted nothing to do with them..but it was haunting watching her go thur all the pain she was put on B/C and it stopped her pain so we dodged the bullet.
    Good for you quitting smoking..how long has it been? you sound like you know what you are doing with all of this.I dont like Anxiety it makes everything worse...I would rather be in pain that to have Anxiety!!! so have you thought about what your going to do? how long you will stay off the pain pills and see if you can get by?

  5. #5
    The Husband is offline Member
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    Skittles,

    I would switch to Naproxen 500mg x2 (per day) but they will get you very tired the 1st time you take it... You are lucky you did a slow taper with minimal w/d to this point consider yourself lucky. I jumped off 80mg daily oxycontin as prescribed and it sucked to say the least.

  6. #6
    skittles44 is offline New Member
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    I smoked occasionally for the past 10 years or so. I figure I will have to give it at least a month to hopefully let my brain dopamine levels become somewhat more normal and also to give my mind time to clear.
    Why the Naproxen over the Ibuprofen. I'm open to anything to help deal with this pain.
    I believe the low-dose level of oxycodone was causing me a ton of anxiety!

  7. #7
    dreamingfree is offline Member
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    I would suggest talking to your Dr about non narcotic solutions if you believe the low dose oxy was causing the anxiety. Everyone reacts different to meds, most don't exp anxiety on oxy, its coming off when that pops up. But there are non narcotic but prescription strength medications, maybe an nsaid or muscle relaxant...some pain injunctions.

  8. #8
    skittles44 is offline New Member
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    I never experienced the anxiety until I tapered off my dose. In fact, the meds helped a ton with my anxiety when I was on them. I've tried every muscle relaxer, had Botox injections, Markain injections, and even went to the Cleveland Clinic for any sort of help. This has been a 2 and 1/2 year journey to try to find a solution to the pain, other than the pain meds, and all treatments have proven to be temporary at best.

  9. #9
    melindau is offline Member
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    Skittles,sounds like you have a good plan.I think it was a good move when you quit smoking...I have battled that for the past couple years now..I quit for a few week and Im off to the store getting another pack of smokes.LOL...


    Husband
    How long have you been clean now??I feel for ya!!! Been there!!!!

  10. #10
    The Husband is offline Member
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    mellndau,

    just over 2 months but I have legit chronic pain and can honestly say I am very greatful I never got any buzz/high or euphoria from the meds so for me its just all negative effects beyond pain relief... C/T w/d make my skin crawl just thinking about.

    Skittles I found aleve, or napoxen works better then advil for aches and pains.
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  11. #11
    dreamingfree is offline Member
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    I would say it comes down to a question of quality of life, if you have tried every non narcotic option and turned to the percs as a last resort and were having no issues while on the meds, and were not abusing why did you feel the need to stop? The anxiety from tapering from 20mgs of percs was so bad you had to stop working? Is it possible that the depression and anxiety is a result of living with the chronic pain? Not suggesting or judging...just trying to get a more clear picture. Again, IMO it comes down to a quality of life I would think.

  12. #12
    skittles44 is offline New Member
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    I've always dealt with anxiety since I was very young. When I was taking my regular 3 pills a day, I never had an issue with anxiety. I think when I began taking one 10mg Percocet in the evening, my body began to withdraw everyday. Some will say, split the dose up throughout the day. But for me, the pain was always worst in the afternoon and evening or the longer time I was in the seated position.
    I'm not opposed to going back on the meds, but I think after 2 and 1/2 years that a break to assess my current pain level is necessary.
    Right when I stopped the small dose of Percocet a couple days ago, my anxiety subsided greatly. And yes, when you speak publicly for a living, anxiety can cause you to roll up in a ball in the corner.
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  13. #13
    dreamingfree is offline Member
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    Please don't be offended, I was just trying to get an idea. I too suffer from chronic pain as well as PTSD and am not working due to it, so believe me no judgment intended. You are right, after some time there is nothing wrong with getting an idea of your base level pain. Sadly other then the things I suggested I can't think of anything else to try while you are getting an idea of your pain level...have you tried tordol? Those are all the things I have tried or am still trying...some I'm not sure yet how well they work, I'm in the trial and error myself as my attempt to taper was unsuccessful. Sorry wish I could suggest more. Have you tried ultra strength Tylenol and an nsaid taken together, that does sometimes help me...although I do have different pain.

  14. #14
    skittles44 is offline New Member
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    Quote Originally Posted by dreamingfree View Post
    Please don't be offended, I was just trying to get an idea. I too suffer from chronic pain as well as PTSD and am not working due to it, so believe me no judgment intended. You are right, after some time there is nothing wrong with getting an idea of your base level pain. Sadly other then the things I suggested I can't think of anything else to try while you are getting an idea of your pain level...have you tried tordol? Those are all the things I have tried or am still trying...some I'm not sure yet how well they work, I'm in the trial and error myself as my attempt to taper was unsuccessful. Sorry wish I could suggest more. Have you tried ultra strength Tylenol and an nsaid taken together, that does sometimes help me...although I do have different pain.
    I didn't mean for it to sound like I was offended at all, I was just explaining my viewpoint. I appreciate all the feedback you have given. What other OTC pain meds can I try, because I'm not sure how long I can stand this constant pain?

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    dreamingfree is offline Member
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    At one point I was told to rotate through taking combos of Tylenol with Advil, then Tylenol with naproxen, never taking the same combo for more then three days....and I would max the daily doses out. Maybe some heat withe the OTC, I think you might not be successful in taking the pain away but maybe just the edge off. Unfortunately with OTC the options are limited. In Canada we can buy Tylenol 1 OTC...maybe you can there as well.

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    I am so sorry for your pain, you are in a tough situation, but boy you do have strength. I think its wondeful that you decided what your life would be like without it. You saw you might be heading for trouble and you quit, that is great. However, the flupside is your quality of life. Yes, I would try going narcotic free for a while, and see how you do. You can always go back on the meds if it becomes unbearable. What muscle relaxers have you troe

  17. #17
    Lynnsland is offline Junior Member
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    Have you tried neurontin or lyrica? I fractured my sacrum and pubic rami in May. I had dramatic decreases in pain sensation over night the first time with Lyrica. I stopped taking it because of morning dizziness. I reached a plateau quickly and staying on it didn't seem worth it. I wasn't getting off the norco like I expected I would so I tried another med. I just did a weekend of neurontin 10 days ago and got rid if the last of my groin pain. It made me feel stoned while my pain became a tingly numb sensation. After 3 days I stopped it and the pain is still gone. I also started acupuncture. I think it's helping. Good luck

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    Lynnsland is offline Junior Member
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    Hi again Skittles,
    You've had your prostate checked? Your psa is normal? Oddly enough my spouse had his first psa check with routine physical after turning a certain age.....it was 11. Freaked everyone out. He had prostatitis that was part of an autoimmune flare up, low back ache that lasted 6 months + and responded to Enbrel aka etanercept. Something to research?

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    skittles44 is offline New Member
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    I'm currently trying Lyrica and not sure if it makes a difference. I've had my PSA levels checked as of last week and all tests I have come back as normal. I believe what I have is Pelvic Floor Dysfunction or LAS and my pelvic muscles are so tight that nothing will relax them. I've tried every medication you can think of.

    I'm actually heading out to Cali in a week to see a specialist who deals with Levator Ani Syndrome. She has worked at the Cleveland Clinic for 15 years and focuses on male pelvic pain, so I believe I will be in good hands. It has been 8 days since I took my last Oxycodone and I haven't had any cravings or anything like that, more so just frustration in dealing with this pain. I'm really looking forward to my trip to the specialist in California at Stanford University.
    The depression I experienced when coming off the meds has completely lifted. My sleep still sucks, but I'm sure it will just take time. Other than that, no other withdrawal symptoms were noticed, but this was because I was on such a low dose.
    The pain I experience is mostly when I am in the seated position and just grinds on me all day. Hoping and praying this doc in Cali has some answers.

    I did have my T levels checked and they were very low do to the Oxycodone, so my doc put me on Androgel.

  20. #20
    Lynnsland is offline Junior Member
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    Good luck Skittles. Keep us updated?

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