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MD Decided That I No Longer Need Pain Meds

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Comments

  • sleeprgirl said:
    Did you read John's link to the Chronic Pain Handbook? It is a very important read. It discusses intractable pain. It discusses how intractable pain effects the nervous system and that it is vital to manage your pain otherwise you can develop coronary disease, hypertension to name a few.

    Lisa
    Lisa, I actually did save that handbook, but I've not yet read it.

    Today was day 1 of another pain med reduction. I only took 2 doses today and I don't get anymore until 8am tomorrow morning. It was rough being at work all day with my pain at a level 8 without much relief at all. It's hard to sit still at my desk when my back hurts like that. I tend to fidget and get up frequently and just feel uncomfortable overall.

    It's been very interesting getting reacquainted with my severe pain. It's been awhile since I felt it this bad.
  • dilaurodilauro ConnecticutPosts: 13,498
    I know what you are doing and I know you know what you are doing.
    It just so scary when I hear of pain levels hitting 7 or higher.
    Thats getting real dangerous.
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
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  • dilauro said:
    I know what you are doing and I know you know what you are doing.
    It just so scary when I hear of pain levels hitting 7 or higher.
    Thats getting real dangerous.
    Naw...it's not dangerous....it's liberating! LMAO

    (just kidding of course)

    I'm fine though. I haven't had any withdrawal effects at all. Just the pain levels rising which I knew would happen. The worst part is every time I had to go to the restroom. Sitting down onto the toilet would bring about such excruciating pain that it took my breath away and I literally felt as if I'd pass out. Luckily there's handrails in the stalls, so I wasn't gonna fall off the john.

    I'll be ok. I think this will be good for me and for my doctors to know exactly where I stand pain wise. I went ahead and sent my doc a message just a little while ago with an update. I also told him that my insurance had changed and he was no longer in my network. I basically said, "I'm willing to pay the difference if I feel like I'm being taken care of. If not, then maybe it will be time to find a new doctor." I was nice about it though. ;)
  • SavageSavage United StatesPosts: 7,279
    ..seems a little conflicting in part and a little critical.

    Funny to think about doc admiring patient for working. I think docs look at the individual and appreciate patients doing the best they can.

    The being honest with doc may be in conflict with don't whine..as you say.

    Depression...anxiety..whatever else..could also be syptoms that need to be addressed along with pain management.

    The only way to get anywhere with anyone in relationship..the doc patient relationship.. is good communication... about pain, meds effects, your activity level and tolerance to name a few.

    Congratulations for you being able to work..but some can not. And some would need another job if on your pain meds as they would not be allowed in all professions.

    There is no recipe for how to be. We are individuals and the things you list as wrong could be..as I mentioned...symptoms of other things going on with patient or a person's personality tendency in which life gives feedback and consequences to actions.For ex: some stranger you may have been encouraged in sharing some of your story and that they are not alone...such as here on this site.

    I am very sure it is a hassle at times for docs...as every profession has its hassles and one needs to decide if pros out weigh the cons and may need to change jobs... but also it is hassle to be in pain.

    My response here is only to share that whoever we are, we can be helped and supported and still a valued part of this world.

    Thank you


    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • i too am about 13 months from my last surgery, but the fusion i had in 08, touches home with your problem. when the surgeon pushed me to pm after 3 months, my pm doc at first went back to the meds i was on before surgery, i think it was fentanyl 75 and oxycodone for bt pain, anyway, after no improvement in like 2 visits, he said "well narcotics arent working for you" and out of the blue took em all away and gave me steroids and muscle relaxers. i dont even need to tell you the kind of withdrawels i went through, but the pain was unbearable! just days later i called the office to explain and his coworkers couldnt beleive he did that with me being on narcotics for over 2 years previously! they had me come in and get a perscriptin for something, cant remember what, but i just made an appt. with another pm doc. and completely opposite of this guy he talked to me for about 15 minutes, and i left there with fentanyl 100, stronger bt meds, sleep aids ond depression meds! we have had the best relationship ever dreamed of since. it sucks changing drs., i know that. but you have to do what works for you. even though i told the other guy, im gonna lose my job if you dont help me get this under control, he just insisted on no narcotics and injection after injection even just being 4 mos. post op from fusion. its a shame to say or even have to go through, but some drs. just have no idea what its like to hurt so bad, but on the other hand, there are drs out there that do, its just up to you to find them. i hope you do, you deserve it!

    another fact that nobody talks about is that every injection ive ever had only fixes the "lightning strike" nerve pain, not the constant pressure pain in my lower back/butt. well so does methadone! i dont know why they dont prescribe that more often, after all it blocks the high from narcotics and is a miracle for nerve pain! not to mention that its the cheapest medication out there, even if you dont have ins. its like $5.00 reg price for a decent amount! so if thats the worst kinda pain you are dealing with, id ask to try that.










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  • Robin,
    From my understanding the theoretical concept for not taking medication was something that some PM clinics adopted based on academic research and some residential PM schemes stipulate this as a prerequisite of acceptance, perhaps going in clean, so that the true nature of your pain can be assimilated, chronic pain has many facets, layer upon layer in its development, if those layers can be stripped away the suggestion is that PM itself is more effective.

    Robin, you said a very valid observation, “my life already revolves around the pain” and that includes medication, it is a cyclical process to take medication and as the pain increases more meds as a consequence are needed, the theory is to break that cycle of dependency, the most effective overall strategy is a “simultaneous collective of ongoing treatments” of which medication is only one aspect, in Melzack and Wall 1988

    Your doctor suggested 6 months timescale for a reason and you need to utilise that overall time, to have a plan and reduce medication over that time allowed, doing it over a shorter time is dangerous and not a good idea. You could ask which academic paper supports the idea of less medication the date and name of the paper also.

    I have been on a inpatient residential pain management, I take less medication as a direct impact of learning to cope more effectively. I do not think the idea and concept of why you were being asked to do this was explain sufficiently and an opportunity lost as a consequence.

    Any change of this magnitude would fill anyone with initial panic, those who can adapt to change like this are more likely to succeed in PM, other strategies will be introduced to compensate and over time learned behaviour with be addressed through cognitive behaviour therapy, it is hard at first and the doctor is trying to help you, success is in your hands. As Robin poignantly said, just surviving the week, fluctuates between doing the minimum and total rest as a consequence, trying to pace under the pain, never easy.

    Ron, is correct to say that in the Chronic Pain Handbook the good Dr does say, that pain should be managed with medication, I know from experience that this is a different strategy and some of my fellow colleagues found that transition to reduce medication so difficult to accept, they were not offered a place, my wish it that they were supported and encouraged so that the next time they too had a chance at this lifetime opportunity. If you expect and want the best possible treatment you have to seek out the best, you may not like or even agree with what they are suggesting and from my heart it will pay dividends in the long term.

    The decision is yours and yours alone.
    Peace and be kind to yourself.

    Take care, John..
  • Thank you for your very thoughtful and thought provoking post John. I suppose it is possible that the PM doctor spoke about the inpatient rehab as another option for pain control, but I honestly didn't feel it that way. When he came into the room during my very first visit with him, and the first thing out of his mouth is that I need to stop all pain meds or go to inpatient rehab which is "extremely unpleasant." It felt like a threat to me, not as a potentially good thing. And it did scare me a lot. I'm a single mom and I have to work and I have to take care of my daughter. I can't afford to just be sent away to rehab for however long it takes.

    I have always been willing to do what the doctors have asked of me and continue to do so. And it's because I don't want to be a slave to the pain. I honestly don't. I would absolutely jump for joy if I were to wake up one day and not be in pain and not have to deal with it. I do think that one of the reasons that I've felt like a slave to the pain is because no one has really wanted to manage it. I've read numerous people's stories here and compared to a lot of people, I'm not on very much pain medicine at all. The reason for that is because I haven't wanted to take anything that would impair me, but also because none of the doctors, (my PCP, neurosurgeon, PM doc) have ever taken the time to sit down with me and really ask about my pain and what my expectations are and what I would like. No one has ever done that with me. So I'm still on the same dose of medicine I've been on since the beginning in 2008. I've had no increases. (haven't asked for any) And I've had no additions. Well I did try Neurontin once and felt like I was drunk and I didn't like the Lyrica either because it made my brain foggy. I've managed with the same dose all this time by supplementing with a lot of Motrin and using frequent heating packs and lying down whenever I'm not at work. That's how I manage and that's why I feel like a slave to the pain. I don't actually "live" anymore because it seems like I can't. Often times, when I get busy at work, I'll forget to take my pain meds (this was back when I was still taking them 4x a day) and within an hour or two, my pain will begin escalating and it always reminds me that it's still there and isn't going to be quiet until I attend to it.

    You know what I'd really like?

    I'd like to find a doctor that understands me and my situation. Someone who is willing to listen and recommend that we try some different things until we find the right combination of drugs or therapy or treatments or whatever that would allow me to function at the highest capacity that I'm physically able AND allow me to live my life and maybe even have fun once in awhile.

    Is that asking too much?

    I really am not a difficult patient. I'm not hard to get along with. I don't ask for much. But I feel like my life was taken away from me three years ago and now that my doctors are coming to the realization that this (or me) isn't able to be fixed, they don't want to deal with it anymore. All I want is to continue to function and it feels like they don't care if I can or not.



  • It certainly made me scared and I was only reading your experience and I have been, as many here the idea of a life with no pain is a wish or desire that we would all like to emulate not least when we all have pain for some time, as Ron once said, when and where we know our lives will never be free from pain or never be the same is difficult to determine.

    Nobody here is ever giving up, but we have to be realistic, no doctor consultant or professor ever mentioned my existence without pain. I was told to take medication by the clock so at to increase my threshold, so when the pain did arrive those peaks and troughs were less overall, I as you forget so I set my phone alarm.

    That combination of finding what specifically works for you is important and it is in the knowing that you have the best one possible is not easy, sometimes fine tuning is the preferred choice. I am not your doctor and you need to ask them that question, asking for less pain seems a simplistic objective, in reality it is not that easy. Your objectives are the same ones we all have at 5, 10,15 or even 20 years, we are all here to support each other, who can see into the future.

    I applaud your ingenuity in trying something scary and new, this is the way forward it takes courage and a leap of faith into the unknown.

    Knowledge is power. John.
  • I will say this - It is in my pain contract with my Dr that I MUST keep working AND have a functional life!!!

    He explained to me he won't give pain meds to someone who sits or lays around. OR even to those who "just" go to work and come home and do nothing else.

    He asks me about work and he asks me what else I am doing outside of work. AM I shopping, cooking, cleaning, driving, going places, reading etc.

    He said he also asks the other activities questions as he doesn't want people to just sit around "stoned" ;)
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • i found the right pm docter without starting all over and going through months of extreme pain again. he was perfectly honest with me and just asked the same from me. he put together a few different meds, asked what i thought, came in in 1 month for adjustment, and now only see him every 3 months, unless i call with a change in severity. after seeing all the stories of how hard it is to find a good pm doc that will listen to you, i feel blessed i found him. he does not want me to do more than i have to, and told me the best thing to do after work or on weekends when i hurt is to get off my feet and relax as much as possible. dont push through it. so sorry thats hard to find for most people. i thought my first guy just wanted me to suffer, but now it looks like the norm. good luck, i hope you find one soon that will just listen, no one should have to go through unnecessary pain for no reason. it causes depression quickly that way.
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