Any suggestions would be greatly appreciated

Discussion in 'Fibromyalgia Main Forum' started by maryld, Mar 11, 2010.

  1. maryld

    maryld New Member

    My doctor has filled his last oxycontin script for me.He feels I am headed for the black hole and my body will eventually get use to the 40mg then the 80mg etc and I get that. I am taking 40mgER 2-4xs a day and started with 20mg 2x a day about nine months ago.(and even these doses dont take all the pain away) And before that I was on Ultracet for four years until it stopped working. I suffer severly with FM and CFS and my question is once I come completely off oxycontin, withdrawals and all, where do I go from there?? The pain from the FM and CFS without any meds will be constant agony. And I have tried so many meds and oxy is what gave me the most relief. There is no way I can go without any pain meds and I dont understand what he is expecting to happen. He knows all the meds I have tried and havent worked and all the other countless treatments not involving meds that havent worked. Any suggestions? I am so scared of the pain that is instore for me....any comments, suggestions, thoughts, would be greatly appreciated. I hope I made sense, I am all over the place. Thank you in advance....Mary
  2. shari1677

    shari1677 New Member

    My heart goes out to Mary. I know how you feel. I VOLUNTARILY chose to go off my pain meds in January. I made the decision about a week ago that, for quality of life reasons, I would go back on them. It was the best decision I have ever made.

    Maybe it would be best for you to go to another doctor. Is there a Pain Clinic near you? If you are in Pennsylvania, please let me know - I have a wonderful doctor here.

    Oh, FYI - I was told that no medicine will take the pain completely away - and I think there is some truth to that. No matter what I take, I do still have some pain.[This Message was Edited on 03/11/2010]
  3. TigerLilea

    TigerLilea Active Member

    If your doctor isn't willing to help you with your pain meds anymore, I would ask him to send you to a pain specialist.
  4. hermitlady

    hermitlady Member

    I know exactly how you feel...I went thru detox 5 wks ago thinking I'd be better off. Read my post about my first Pain Clinic appt that I made tonight.

    I'm feeling a bit panicky now, because the pain is driving me insane. I went inpt for detox and it was rough, but living w the pain is no picnic either.

    Hopefully you can find a new Dr, do what you need to do to have a good quality of life.

    Good Luck.
  5. kat0465

    kat0465 New Member

    i agree with Shari, even with pain meds you may have some breakthru pain. But your dr is being unreasonable. for one thing how can you wean off oxycontin with one script?
    it takes more time than that to wean off or you will Have some bad withdrawl.
    and while he is tapering u off, id be looking for a new doc Pronto! like my dr says, if your taking your meds as prescribed, and your quality of life is better,then you need the meds.

    I know there are dr's out there that will write a script for anyone and for multiple drugs, they are making it hard for all of us who really really need help.
    Pain management is trial and error for sure, you have to find the right combo that willl help you.
    what does your dr say about your pain? does he think it will magically dissappear??!! he should have offered you something different if hes not comfortable prescribin Oxy.
  6. Janalynn

    Janalynn New Member

    As already asked, what IS your Dr's plan for you once he wants you to wean of Oxycontin?

    I think it's completely unreasonable for him to just wean you off something and that's that.
    There certainly is, for all of us, that awful realization that we will need to increase our doses are time goes on. That's just normal. My Dr. actually told me there's really no ceiling. Once you become more tolerant, the medication is less effective in every way. So, it sounds like a lot to have "x" amount of mg, but if you're already used to it, it may be like someone else who just started having a smaller dose. Your body reacts differently to it as it gets used to it.

    Has your Dr. been giving you anything for breakthrough pain? does he want you to come off of this because it isn't working any longer, I mean it sounds like it's giving you some relief, or just cause he feels he wants you to? I don't get it.

    Your question was right on the mark. Where do you go once you get off of it. That is something you need to talk to your Dr. about and see what he says.

    How is he weaning you by the way? What is your 'schedule"? I agree, one month is not a very long time - actually pretty unrealistic if you ask me. (did you ask me?) =)

    When do you see him again?
  7. maryld

    maryld New Member

    thanks for reply. I too have voluntarily taken myself off in the past just to see if i can handle the pain without meds. I went through some withdrawals but after that and the pain of CFS/FM kicked in there was no way I could live with the agony!Quality of life,like you said, is way more important..I would of had none. And your right no pain meds I have tried have ever taken the pain all away but enough to get something out of life. I been to pain clinics (many) but they all end up leaving me in more pain then i should be and didnt seem to care one bit what they were doing to me. I live in NJ. I made appt with my regular doctor on tuesdsay before my oxy runs out and i am hoping he will atleast put me back on my old meds that worked for the first four years...ultracet. I am just going to tell him he couldnt have expected me to find a pain doctor with the amount of pain i been in now. He knows I will do what I have to as i have done in the past BUT cant if he wont relieve my pain enough for me to physically do so. Thanks for letting me vent....hope your doing good.
  8. maryld

    maryld New Member

    thanks for replying. My insurance allows me to go to a pain specialist without any referrals so I have many times. Some i found on my own and others he recommened. But they all screwed me at some point. I found myself asking many "pain specialists" you are a pain doctor right? And it wasnt like I was ever asking for anything ridiculous, I was in allot of pain and what they were giving me wasnt working so I would call and explain the agony I was in and they would "squeeze me in" two weeks later. Or they dont believe in oxycontin though i told them it was the only thing helping. Always something along those lines. I guess I will stick to my regular doc and just go back to the ultracet for now. So frustrating but we all go through these times so i guess i will stick it out and if it gets too bad I will go to ER...we all know how fun that is!
  9. maryld

    maryld New Member

    How are you doing now? I never went through horrible withdrawals YET but maybe because ultracet was easier to come off of and that was the main one for four years. Not sure. And I never was on all the other ones for enough time cause I would stop them because they were not working at all or I needed so many pills in a day for just a little relief. But now since i been on oxycontin and stopping tuesday I am going to be in for it huh? What was the worst for you if you dont mind me asking? Any suggestions to help me if I do end up with horrible withdrawals? I am hoping since i been off the ultracet for awhile now they may work again. I guess I will find out. I appreciate you sharing and well wishes. I hope you are doing better? Or is that a dumb question?
  10. maryld

    maryld New Member

    That was my question to him...what do I do after?? I was so upset and annoyed at this point but i think he said find another pain doctor. Which when I see him on tuesday I will be calmer and explain to him I couldnt see a pain doctor cause I been in too much pain to leave my house. And most pain docs cant see you within two weeks, which is what i needed, being a new patient. My doctor has seen me since i was 16 and i am now 38 and he up to that point would let me try anything i asked. And I understood after him giving me 3 scripts when I first went on oxy it was better i go to a pain doc to continue getting them so i did. But they all gave me a hard time. I cant help the other pain meds dont work for me or after so many months i had to up my MG's of oxy. I personally think, because i saw a huge change in my usually doc this last time, that all these horrible sad stories of ODing and the news saying illegal use of pain meds is a huge problem etc. hes scared.( People living with chronic pain and doctors not believing is a huge problem, why arent I hearing that on the news??) But i will go see him tuesday explain to him how i feel and whats going on and just ask for ultracet and hope for that atleast and i will tell him as long as I am able and i am not in agony I will find another pain doc once again and hope for the best. Sorry so long and I hope i even made sense. Thanks for your reply...its so nice to hear what you all have to say. I hope your managing.
  11. maryld

    maryld New Member

    He gave me ultracet for the first 4years& once that stopped working he perscribed me oxy 3xs&then pain doc and if you read my replies you will see my journey so far with that. You are so right...because of those who get it for other purposes we suffer! It makes me so angry!! I dont know how many docs and nurses i told off cause of the way i was treated. I am so sick of nonbelievers. I dont know what got into my regular doctor, he never has let me down. But,as i said in another reply, i think hes scared of getting in trouble (as if hes doing something wrong) with all the news lately talking about pain meds being a huge problem. I dont know. I just get so fed up but i know it wont do me any good not to continue on till i find a pain doc who really cares and believes. Thanks for your comments and thoughts..really helps. My first sentence didnt make much sense but hope you got it...i am just so tired and weak but didnt want to go without thanking everyone for replying. take care.