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War on opiates causing extreme weaning!!!

hi everyone,

I am sure there are other chronic patients going thru the same thing i am but it is extremely life altering. As if we do not have enough to deal with when having intractable chronic pain finally finding the pain solution concoction which allows you to function as a shadow of who you used to be. Here comes this so called war on opiates which is caused by those getting meds in the black market or heroin. Yet, i am now affected as many of us are. I was on 75mg of mscontin 4x a day with, dilaudid 4mg 2x day for breakthrough pain and went down to 75mg morning 60mg day and 75mg night. I have now been weaning down in the last month to 30mg morning, 15mg day and 30mg night. This simply keeps withdrawls from going full force and pain level allowing me to not do anything at all. Now i do not expect to be pain free nor do i think medication is the only option, i also go to acupuncture twice a week plus biofeedback, plus pain psychitrist to feal with the depression of being in pain 24/7. I dont know how ro express to my Dr that the new dosage is simpy not enough to live life in any way at all. Of course being on pain meds for so long causes tolerance but i just want to live, go to the movies work 3 to 4 days a week be somewhat like i used to.. My life id Nothing compared to what i used to be a runner, playing tennis, going out dancing, having a life working. My life seems so pathetic nothing but dr. Appointments on my calendar nothing but pain in my life and dr.s so afraid now with prescribing that even with years of pocedures, mri's, keeping your contract. Your now told to handle the pain with your mind because afterall part of the pain is in your mind. Thats the reply when your forced to wean because of others breaking the law. Sorry for the rant.. Just frustrated at the outcome of the opiate pendelum being swung our way..

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  • The user and all related content has been deleted.
  • Your last line pretty much sums up the situation ... the pendulum has definitely swung the other way.

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  • I think most of us understand and certainly sympathize with what you live with day in and day out. Tolerance is a big problem for alot of pain patients. I can usually stay on a long acting med (MS Contin) for a couple of years and then it just quits being effective. I then change to a completely different long acting med and after about 6 months I can go back to the MS Contin and do great. I have also in the past weaned down to a very small amount of narcotic and stayed there for a few months which tricks the body into resetting itself and then I can go back to my usual dose and do well for quite sometime. Of course the latter is much harder to do so I wouldn't suggest that unless nothing else works.

    I am hoping that common sense will kick in at some point and this "War on drugs," will truly be that instead of "War on legitimate pain patients." But until that happens, I think we all are just going to have to do the best we can on the minimal amount of meds along with ice, heat, massage or anything else we can find that helps. I am finding out that even if your Doctor is willing to write enough meds to keep you in a good place, the insurance company may very well not be willing to pay for them. I have been looking back at some of the formularies from different drug plans and they all are covering less and less, adding more quantity limits and requiring pre qualifications on more and more drugs. It makes me ill. Not much we can do though except sign petitions and hope and pray that things will change for the better. There are groups out there whom are speaking out and trying to give us a voice. We should all find one of those groups and support them in anyway possible. That's the way change will happen.

    I am so sorry Vaness753 for all you are going through. This is what I tell myself when I am in pain or feeling down about my situation. I just have to do the best I can with what I have. There are pain patients out there who have been taken off all their drugs and left with nothing. There are patients whose doctors decided to get out of the business of Pain management feeling it just isn't worth the hassles anymore and those patient are having a very difficult time finding a new PM to take them on. Then I take a moment to pray for them. I am fortunate to have a really good PM Doctor who is doing everything he can for his patients and really cares about them. For example, he gave me my meds a week early just so I could spend an extra week with my parents at Thanksgiving. That is priceless to me. Take care Vaness753 and let us know how things are going for you. Sorry this turned into a book! Just wanted you to know that someone cares and will be thinking about you.

    Cindy


  • The funny thing is that hyperalgesia is a theory and NOT a medically proven diagnosis. Some academic's came up with it when they couldn't explain pain in any other way. As sad as it is and I hate to even say it, suicides are going to increase when people get to the point they cannot take it any longer and then the same people will sit back and wonder why that's happening. I would love to see some type of class action suit against the group of doctors that are playing the CDC like they are puppets. It will have to be some well known politicians or Hollywood elites that die from self inflicted means of dying before anyone will take notice and care.

    Perhaps everyone should require candidates for political office to state their opinion on opioid usage for established chronic pain patients. Then, rally the troops depending on the answer.

    Several Epidurals, L4-S1 360 ALIF, Numerous Facet Joint Injections, RFA x2
  • Thank you for your comments. It is so absolutely frustrating to feel like a useless stump of a human..... Having to figure out how to beg and plead in a manner that wont make you seem like a seeker, when what I am truly seeking is to have some relief. Having to play by all these rules, not being able to ask for certain medications because its a no no when it should be normal when being on a variety of pain medications for years and years. Having to pee in a cup like delinquent to ensure your medication is in your system. When did pain relief become a jail for chronic pain patients? When did we become the impetus group that gets harassed, having to walk on eggshells with Dr's which should be there to help us, listen, try to understand and know the difference between tolerance & being dependent due to curves that life threw at us. I hate having to depend on pills in order to be able to walk or get up out of bed or in order to be able to sleep more than 4-5hours a night. Not only are we strangled by the limits of our bodies, the procedures we have to endure and the medication we need but all while having to live in an invisible box stamped with a large Symbol embossed assuming what and who we are by ignorant people making the calls, rules and regulations that we have to abide by. I I can find an association to support. I appreciate the suggestions by all who replied. I wish you all a beautiful day and may we all live as best as we can with the limits we have.


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  • dilaurodilauro ConnecticutPosts: 11,636

    War on Opioiods......

    Anyone who has signed up for Spine-Health in the past 6 months has I am sure read over a dozen threads regarding upcoming policies on opioids and its impacts.

    I was looking the other day for a comment someone made. I first starting browsing the various discussions and after realizing there were so many, I just searched and found what I was looking for .

    But this brings up a point.

    Do we want to have new discussions opened by anyone for discussions on the war on opioids

    OR

    Do we want to have one large discussion thread (could be parts 1,2,3...) to contain everything that people are talking about.

    I'd like to proceed the way the majority of the members feel we should There is nothing wrong with multiple discussions except that it may be hard to find something, but even with one large discussion, it may be hard to find an comment.



    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences
    You can email me at: [email protected]
  • The user and all related content has been deleted.
  • The user and all related content has been deleted.
  • Ha haa rll54, I needed a laugh. Well I am happy to report my Dr. prescribed gabapentin I have tried it in the past but had dizziness side effect. But, I am willing to try it again and hopefully I wont have the same side effect.

  • MegXMMegX Posts: 0
    edited 12/21/2017 - 11:59 AM

    I've not been a poster but I've been a reading member of the forums for quite a while.

    I, too, am getting increasingly upset about the "war on opiods" affecting the way my chronic pain management doctor prescribes to and treats me.

    I am a textbook case for Fentanyl patch use yet my treatment plan is being changed and doses lowered due to the "war on opiods."

    This "war" is leading to those of us who are compliant, follow directions, and use our medications responsibly to be under treated or likely not treated with opiods at all eventually.

    After several years of wearing Fentanyl patches, my doctor has suddenly decided that long term use has too many dangers. I asked him what they are. He said fatigue, depression, and low testosterone. I've endured fatigue and dysthymia (chronic low level depression) for decades - way before I was prescribed Fentanyl patches - and don't see how testosterone levels would affect me.

    At my last appointment I asked my doctor why we would work so hard to decrease my pain and make my life so much better, only to turn around and undo it all. I never knew the goal of my treatment was to make me feel markedly better only to take it away.

    As everyone knows, we feel so much better mentally when our chronic pain is treated. I'm a lot easier to be around and less self isolating. My depression is not increased by years of wearing the patch. It's lessened by having my pain treated!

    We should not have to live our lives in intolerable pain because some people are being irresponsible or acting illegally.

    I am in favor of a thread for discussing this particular issue - an issue that will affect all opiod users if it hasn't by now.

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