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I'm in a Predicament

ToddrickTToddrick Posts: 15
edited 10/31/2016 - 3:41 AM in Chronic Pain
Hello. I need to talk with others about my predicament, because I feel so frustrated and hopeless that I just need someone to understand me. I'll TRY and keep this short, but it takes some splainin'...

I have chronic low back pain, as well as arthritis. I was seeing a pain mgmt place for several years, but we didn't get along that well because I felt they singled me out for being a "young" male patient. They harassed me every month, and belittled me for not magically getting better. They forced me to get shots and always pushed Long acting pain meds, like Kadian or Suboxone. While I obviously sometimes benefit from long acting meds, my body does not tolerate them for long periods, and I need instant release meds to use to skip/stop the long acting ones when I'm having a good day, or to take as needed on bad days. My nurse kept saying that was "drug seeking" behavior, which only irritated me more. So I missed an appointment one day, and they used that as an excuse to terminate our relationship instantly. No refills, no nothing. So I started taking some leftover Suboxone for pain, which works, but it is long acting, and makes me sick.

Fast forward a whole year later. Miraculously, I still have a few Suboxone left, since I've been getting by on a quarter pill per day. Before I run out, I want a new pain mgmt doctor, but I've tried two and both have given me the same shtick. They treat me like a full-on addict. They do a urinalysis on every single visit. Won't prescribe so much as a single Vicodin, and treat me horribly, as if I am some sort of street urchin, begging for pills. And, yes, I have begged them, because I'm in pain, and desperate for even temporary relief--that's the main reason I need to see them, for immediate assistance, but they give none. They treat me like I'm subhuman, and assume that Suboxone is only for addicts. I couldn't even get a hip surgeon to take me as a patient because he was freaked out by the Suboxone. They all have one thing in common, a blank compassion less stare, and shrug of the shoulders when the topic of dealing with pain comes up. It is a topic they can avoid, but one that I must cope with at almost all times.

So that is my predicament. I really don't know what to do because until I get a hip and/or back surgery, I am going to be in a lot of pain. Even if I was a total addict, shouldn't I get some relief? I would never ask if I weren't in real pain. If I am flagged in their systems as an addict or something, then I sure wish someone would talk to me about that, or ask my side of the story. None of the doctors will even listen to me. Are they all just (EDIT)? Is it just because I'm on Suboxone? Is it just because I'm coming off as too desperate? But why don't they understand my desperation, at least a little bit? How do I go about finding help when every turn is like a hostile environment?
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13

Comments

  • LizLiz Posts: 9,706

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • Since I don't know how you approach pain doctors let me just make some assumptions that may or not fit your case. If you go into the doctor asking for pain meds, that may be a bad approach. I would go in and complain about the pain that you have and let the pain doctor do their diagnosis. From there, ask them for their suggestions on how to address the pain and if a different treatment plan is more appropriate for you. Pain can be caused by something serious that needs more aggressive treatments. You need a diagnosis of what is causing your pain. If the pain can't be explained, than you need to work out a treatment plan with your doctor to address the pain. At that point, after you have built a good relationship with the doctor, they may help you with pain medications, or better yet, maybe they can come up with a plan to eliminate what is the root cause of your pain. Personally, I would love to eliminate the cause of the pain that I have and not have to use pain medications that mess with my mind or otherwise have side effects that I would just assume not have. Sometimes that is not an option, but it certainly is a more desirable outcome.
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  • ToddrickTToddrick Posts: 15
    edited 08/26/2014 - 3:45 AM
    I agree a thousand times over that fixing the problem would be a better solution. I've been on high doses of narcotics for years at a time, and the pain just comes back once my body adjusts to the dose. I do not want that ever again. All I want is some relief. What I said to the pain doc was that I'm taking Suboxone, but it makes me sick, and isn't working for the pain, plus I'm almost out. He counted the pills and told me to just keep taking them...big help. So I said please, please give me Vicoden or something, and he says "what do you think this is, McDonald's?" He mocked me, and now I cannot see going back to him again, because he obviously doesn't like me.

    The worst thing of all is that I hate pain meds, and don't want to be on them, but I haven't got much of a choice. There really is no easy solution, I know. In the past the MRI's showed nothing severe enough to perform surgery on, but now they show perhaps that I need a fusion, and my hips need replaced too. I feel like finally a surgical solution is at hand, but it cannot come fast enough. I've had inadequate pain control for a year now. I guess my only option at this point is to stay in bed and rest, and stop trying to participate in life, but of course my job can't be put on hold.
  • Extended release medications are no different than the immediate release, and to be honest, your "reasons" for "needing the short acting" are what is commonly believed to be drug seeking behavior. If pain relief is your goal, then the use of long acting medications provides far more effective and consistent relief than the immediate release versions of opiates.
    How many doctors have you seen for treatment of pain? You state that all of them made you do things you didn't want to do, injections, and ? ALL pain management programs are about more than just taking opiates to treat pain. They should include excercise, physical therapy, use of TENS in appropriate patients, ice, heat, rest when necessary, injections, and other therapies that may be beneficial for patients. They should also include regular pill counts and urine testing to make sure that the medications are being exactly as prescribed. You are being treated no differently than any other patient who is seeing a pain management doctor for on going pain treatment.
    As far as the medications and long acting versus short acting medications, long acting medications are recommended for patients who need to be on medications long term, because they provide better pain control, with less dosing per day, and there is no variation or up and down in blood plasma levels as there are with short acting medications. The use of short acting medications may or may not be necessary in some patients, and doctors who do use them, use them sparingly in patients, which is the way it is supposed to be.
    Arthritis can be effectively managed with the use of medications such as celebrex, or other prescription anti inflammatory medications. What is your specific condition regarding your low back pain? Have you consulted with a board certified spine surgeon regarding it? Have you had any imaging or testing done to find out what exactly is wrong with your back or hip and what treatment options have you been given?
    Since you state you are young, your best options would be to get those conditions treated and repaired, so that you can resume your life, rather than continue to live on pain medications when you may have the option for a surgical fix.
    You state that you have been on high doses of narcotics for years, and miss appointments? Patients who miss appointments with their pm doctors are not usually continued with that practice, when they do it without notice. Some practices have the policies written in their contracts.
    Who is giving you suboxone? If you were dismissed from your last pm , how did you manage to obtain and stay on suboxone for over a year?
    You aren't going to find a doctor who is going to write you short acting medications because you don't like taking the long acting, nor are you going to find one who allows you to "supplement" your use of medications with suboxone. You also aren't going to find a doctor who will only write you prescriptions without your undergoing other recommended treatments. That's just NOT how pain management works. Urine testing is mandatory across the board.
    http://www.spine-health.com/forum/pain/chronic-pain/chronic-pain-treatment-step-step
    http://www.spine-health.com/forum/treatment/pain-medications/dos-and-donts-pain-management
    http://www.spine-health.com/forum/treatment/pain-medications/pm-your-first-visit-what-expect-what-ask

    .
  • Living with chronic pain is so incredibly hard. It sounds like you've got caught up in life & allowed your spine problems to just fester. In the current medical environment we really need to push & advocate for ourselves. I completely understand your focus on medications & your bitterness over past experiences but if I were you I'd try really hard to start anew with your treatment. If you walk into a new pain management doctors & show your frustrations, then ask for narcotic medications your unlikely to improve your situation. So many 'pill mills' have been closed down in the last few years that many drug seekers are now desperately doctor shopping. It's well worth remembering that when you meet a new doctor. They don't know you. Their primary concern is their license & established patients. They will all be suspicious of you at the start.

    When we're your last diagnostic tests? If they weren't in the last year that's a good place to start. I'd take my medical records to a board certified spine surgeon for a review. Hopefully they will start you on the correct action plan. Hopefully they (or your GP) will then refer you to a new pain management doctor. I'd simply describe your pain & your history & ask them for help. Doctors don't like being told what to do. Wait to see what they suggest. Are you willing to try whatever they suggest? Starting new with physical therapy, injections, RFA etc. could be a tremendous help for you.
    From what you say you're on a very low dose of Suboxone now. From everything I've heard it's a horrible, often misused medication thats very hard to quit. Do you want to get off of it & onto a more common pain medication? I would! See what your new doctor suggests replacing it with. Just explain that although your pain isn't well managed you need to continue to work & function. Most patients have to do urine tests. We know how degrading it can feel but it's the world we live in now. It sucks!

    Many doctors will no longer prescribe instant, breakthrough narcotic meds. They will want you to take an ER (extended release) med. What have you tried in the past? Most people experience tolerance at some point & their medications need to be adjusted. I've found that changing meds, rather than increasing the mg allows me to stay on a reasonably low dose.
    Suboxone is frequently prescribed for addiction & that can lead to judgements & confusion. Why & when we're you first given it? Do you find it effective in managing your pain? Do you have a history of addiction or abuse in your medical records?

    I'm so sorry that you're suffering like this but sadly I don't thinks there's a simple answer. You need to find & establish a good working relationship with new specialists. The sooner you start the quicker you can get your pain managed but it's going to take time. It's highly unlikely that your going to walk out from the first appointment with the prescriptions you want. Hopefully they will prescribe something to help you manage your pain. You've lasted a very long time on your last bottle of pills. You can do it! ;-)

    Please try to let go of your anger & frustrations with the medical world (or at least hide them) it's only making things so much harder for you. There are good doctors out there, I know it can be difficult to find them but once you do things will be so much better for you. This is a great place to vent & complain, the doctors office isn't! I hope you get the help you need. Do you surgery planned?
    Osteoarthritis & DDD.
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  • Sorry for any repetition, Sandi post wasn't there when I hit save! ;-)
    Osteoarthritis & DDD.
  • ToddrickTToddrick Posts: 15
    edited 08/26/2014 - 6:40 AM
    Sandi, the problem is I don't feel like I'm being treated like every other patient. I feel like the doctors want me to be naive, and because I'm not--because I've been on meds they don't even prescribe, like Suboxone--they are scared to treat me. They don't want anything complicated to deal with. None of the new docs even let me explain half of what I'm trying to convey here. I don't know how I'm supposed to behave as a "veteran" pain patient, because I've never been one before.

    I feel like they think I'm just seeking meds to continue taking meds for fear of wd, and that is what frustrates me most. I can see it in their eyes. As I explained, I have Suboxone left over from when we tried it off-label for pain at my last PM doc. I could never take it as prescribed because it makes me dizzy and sick, so my PM doc told me to swallow the Suboxone to see if the side effects were better. Suboxone doesn't absorb well when swallowed, so he upped the dose significantly. I still couldn't take it, and this is why I had a ton of Suboxone leftover. [If I was an addict, I surely would have eaten all my pills by now, but the docs don't see things from that angle, they see things through addiction colored lenses].

    Part of my predicament is that I don't want to be on pain meds 24/7, and the other part is that I probably should be. Neither is really happening. I am in limbo, have been for a long time. And neither living with pain,nor living with opioids is a good situation to be in! I realize this is not the doctor's fault, but it is hard not to be angry with them for not doing something to help at least temporarily, when they clearly have the power to do just that.

    Ideally, I at least want to be able to go for days at a time without taking anything, and you cannot do that when they make you dependent on long acting meds, because you'll go into wd sickness. So in that regard short and long acting meds aren't the same thing at all. It is sad and ironic that pain patients who do not want to be on pain meds 24/7 is what we now call "addictive behavior". I think it is so wrong; I think the medical community has it all wrong to be making people dependent, but that is another story. The bottom line is that I would refuse to go back on long acting meds if they offered because I even prefer Suboxone to that.
  • sandisandi Posts: 6,269
    edited 08/26/2014 - 7:26 AM
    First, suboxone is used in pain management for patients who have tried other medications and failed due to misuse/abuse or failure of other medications, or high doses of opiates not working.
    Doctors who prescribe suboxone have to have a special certification from the DEA - it contains an X number which simply means that they have taken the additional training to prescribe suboxone for addiction treatment.
    Suboxone used in pain management has a ceiling effect, meaning that going above a certain dose does not provide any more pain relief benefit than a lower dose. When it is used in the pain management environment, simply for pain control, it is not supposed to be used at doses over 2-4 mg . It is ineffective at doses higher than that. Doses higher than 2-4 mg is used to treat addiction. Too many patients who aren't getting what they wanted from their pm doctors have gone to suboxone doctors thinking that this is somehow an option and unfortunately, those doctors who use suboxone to treat addiction issues, prescribe suboxone at far too high a dose for the strict management of pain.
    You having enough suboxone on hand to manage to get through a year of no pain management says that you don't follow the directions of your doctors. Being non compliant is a no no in the world of pain management, and the fact that you self medicated sets off alarm bells.
    I don't expect you to like what I am saying, but I am telling you how the doctors are viewing this situation.
    You've seen at least 4 doctors, are taking suboxone that is not prescribed to you currently, and are seeking short acting medications because you don't like taking the long acting versions.
    You haven't explained what your conditions are.......so we have no idea of whether or not you need to be on medications 24/7 or not. Arthritis pain flares and recedes, and is normally managed with NSAIDS. As to what your low back condition is, we can't guess.
    Doctors make decisions for patients based on their examination, test results and best medical judgement. Like it or not, you have multiple red flags waving in their face, so of course, they are going to go very slowly with you, and treat you with the least invasive treatment options first. NO doctor, no matter how long you have been in treatment with another has to
    continue or manage treatments begun by another physician. He is going to make his own decisions based on your medical records, and imaging/test results.
    If you can go days at a time without needing pain medications, then you aren't living with chronic pain. You are dealing with flare ups. Anyone who is taking short or long acting medications, on a regular basis will experience withdrawal symptoms if they suddenly stop taking them. It is not just opiates but other medications can cause similar discontinuation effects. Long acting medications are used to combat tolerance issues caused by using short acting medications, along with the ups and downs in blood plasma levels. Long acting medications don't cause withdrawal symptoms simply by taking them. Short and long acting versions will cause the same symptoms if they are not taken once your body acclimates to them.
    The bottom line is that if you want to be able to have pain medication to treat your conditions, then you are going to have to follow the guidelines and treatment plans, including injections, physical therapy, or other modalities that they give you to follow and you are going to have to take the medications as prescribed, long acting versions included , submit to urine screens and pill counts for compliance just as the rest of us have to do.
    You didn't answer the questions you were asked regarding what exactly is wrong with your spine/hips and what treatment options have been suggested for you? What options were you given for therapies aside from taking medications? What other things do you do to help lower the pain levels? Have you consulted with a surgeon and when? What recommendations did he/they make? When was the last imaging done and what was the diagnosis? ALL of those things factor into treatment options both with pain management and surgery.
    If you are unwilling to comply with the rules of pain management and follow their treatment programs, then you are going to have to find other ways to manage those flares.
  • sorry you are having problems with pain doctors I have also been there with one nasty individual I left his office crying and furious .and went straight to my family doctor and I have been going to him for many years as he knows my situation ,have you had a diagnosis of chronic or intractable pain from anyone ? if so you should not have a problem getting your medication ,I don't like it when people with intractable pain are treated as drug seekers just because they are in pain .the pain we feel is just as bad as terminal pain when you have been diagnosed with a poor prognosis and when all other options have been exhausted like heat /ice /TENS {an old favorite of mine but no longer works since my last surgery } I have also has various injections and for many years I was under the care of a very kind and understanding pain anaesthetist who tried all she could to help my pain ..but in the end she has to declare she had nothing left to offer and referred me back to my GP he has looked after me ever since and as I can't take certain drugs narcotics are the only option for me .my level of pain is around an 8 every day sometime going up to a 9 and on a good day a 7 but always debilitating .to the point where I now need help just to get washed and help around the house .I don't like to hear about genuine people struggling to get pain medication when they need it ,.just because its narcotics ..if it was for diabetes there would be no problem ..shine on and smile
    KB
  • sandisandi Posts: 6,269
    edited 08/26/2014 - 7:26 AM
    Intractable pain is not the same thing as chronic pain. That particular condition is often thrown around as being the same and it is not. Intractable pain is a central nervous system/sympathetic nervous system disorder, also known as Reflex Sympathetic dystrophy or Chronic Regional Pain syndrome, amongst other names.
    The treatments may overlap in the world of pain management, but there are different standards for treating that condition versus treating chronic pain.
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