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MD Decided That I No Longer Need Pain Meds

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Comments

  • I will find a new doctor. I am actively looking. Like I said though, the first few I called in my network were not accepting new patients. And I need to be sure to transfer to a good one. One who will actually listen to me and respect me as a human being in need of pain management.

    As to Certifried, sleeprgirl, terror8396, and of course ME...how dare we all shatter Mr Advanced Degree's notion that ALL pain patients are locked in a drug induced haze and therefore cannot possibly get ahead and be successful in life. As for my credentials, unfortunately, I am one semester (17 hours) short of my master's degree in nursing. I had to drop out for awhile to take care of my mother who was dying of cancer. That was a few years ago and way before I had the final injury on my back that forced me into a desk job. I haven't gone back to school yet because you know...student loans came due....momentum got lost...life got in the way...etc...etc. But I'm sure I'll go back. I've even been looking into some online masters courses recently to try and go ahead and finish up my degree. But I DO make pretty damn good money now, and I'm not sure how much difference it will make if I get my MSN, other than it will be satisfying for me to reach this personal goal.

    But the back injury thing has been so completely frustrating for me. Here I am up in the middle of the night because my pain woke me up. Because I'm only taking my pain meds 3x daily now, the pain gets too far gone and I'm not ever getting it under good control anymore. Now it's beginning to affect my sleep. I haven't wanted to think about this, but I'm actually a little worried about another infection. I got those 6 injections in my spine 3 weeks ago and it seems that the left side (which normally is the worst) has gotten even more painful lately. I can't tell if it's just because of the decrease in pain meds, or if there's something new going on. I'm so freakin paranoid about the infections since I've been through it twice now, that I get real nervous when I see an increase in my pain particularly when it seems to localized to a specific area.

    So YES, I do plan to find another doctor as soon as possible. However, in the meantime, I'm going to continue weaning down off the pain meds, for two reasons.

    Number one- I haven't been completely off of my pain meds since this whole thing started three years ago, so I am curious just how bad it still is without any pain control at all. I suspect it's still very bad since I'm currently living at level 6-8 while taking the meds 3x daily.

    Number two- There's no telling how long it will take me to get set up with a new doctor and once I do, there's no guarantee that he won't be an asshole like the current one and refuse to manage my pain. In the meantime, I'm stuck with the guy I'm with and will have to depend on him to refill my pain meds, which he is already decreasing and expecting me to be off of them soon. So because I don't want to get stuck in a situation where he suddenly cuts me off and I have to go through a forced physical withdrawal, I need to do without my pain meds as much as possible so that I'll have some left in case he decides to do that to me. I do not trust him NOT to do that to me. He did it last year shortly after my surgery with the Soma I was on. He just decided one day not to refill it when I asked him. I was scared to death that I was going to begin having seizures because that's what can happen when you suddenly stop taking Soma. Luckily, I wasn't taking enough of it to suffer withdrawals, but it scared the crap out of me and he was not concerned....he just decided it was time for me to be off of it, so he refused to refill it when I was almost out.

    I've read a lot about pain medicines and dependence and one thing I've learned is that there is physical dependence and emotional dependence. Obviously, I've no doubt that my body is physically dependent on the pain meds because I've been on them for three years. But I do have my doubts as to whether or not I'm emotionally dependent on them. I really don't have an addictive personality. I've never enjoyed the feeling of being "high" or impaired in any way. Because of that, I've never been a drinker or ever really experimented with drugs. I do not like to feel out of control or foggy in the brain....never have. I've tried various other meds at the doctor's suggestion. I took Neurontin ONE time and felt like I was drunk, so I refused to ever take it again. I've tried Lyrica and actually gave it a chance for about 2 mths....hated the way it made my brain feel sluggish and foggy, so I stopped taking it. I've still got a whole bottle of MScontin that the doc gave me after surgery last year and my daughter told me that it made me forgetful, so I stopped taking that one right away. I can't take Percocet because it makes me vomit. So the Norco has been the best compromise for me. They do not impair me. They do not make me nauseated or foggy. They control my pain fairly well.....at least well enough that I can function. The pain is never GONE, but at least it's tolerable and I felt like that was a good compromise. So that's all I take now, but now that's being taken away. As I've said, I've followed ALL of their rules, taken ALL of their suggestions, done everything they've asked of me, and have really tried to be a model patient.

    And look what good it has done me.

    I'll find a new doc soon and I guess I'll have to start all over trying to build that trust that I'm not going to abuse the meds. I've been with my current PCP for close to 15 years now, so you woulda thought that he trusted me by now, but apparently not. Back when I used to have just periodic back pain flare-ups, he'd send me for ESIs and give me a prescription for about 20 lortab to get me through the acute phase. Back then, a bottle of 20 would last me a year or more. But he still does not trust me not to abuse them...even now when I have NEVER abused them in all the time I've been on them and all the time he's been my doctor.

    Sorry this is so long. It's the middle of the night and as I said....I just took another dose of pain meds because the pain woke me up. Now I'm just waiting for it to start working so that I can try again to go to sleep.

    Nite everyone ;)
  • SavageSavage United StatesPosts: 7,385
    ...and now losing your physician's support for your medical issues and pain.

    What you are going through has touch my heart deeply.
    I so appreciate you sharing your situation. It's so unbelievable..as is so much of what many of us experience. If I wasn't living my life..not sure I'd believe it.

    My situation is different as I do have memory problems now..from strokes..not meds..but I'm not working. When I was working..I would be more "altered" when I tried to work without the pain meds.

    I was so trying to keep pain under control...I could barely stand it when someone wanting to talk to me...esp useless and redundant conversation or info. I started to feel I wanted to bitch slap everyone.

    In any profession, that's not good :) so I had to throw in the towel and now I'm on Disability.

    Your thread here is such a great example of the difficulties we face...similiar and yet each so unique. Learning to support each other, help with advice..without judging.. has been one of the best things about this site.

    Also, sharing the injustices that happen to us and how to problem solve for our sakes and that of our families has been so life changing for me. Again, thanks for this thread.

    It's 2012! No need to suffer!

    I'm glad you are going to get a new doc and certainly hope for the best for you!





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

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  • Thanks for sharing some of your situation as well. It's truly amazing to me how many of "us" are out there and yet the medical community still "labels" us for the most the part and refuses to help us in any significant way.

    I remember when I was in nursing school and we had a pain doctor come and do a lecture on pain and pain management. It's been several years ago and I wish I had still had my notes because I really did enjoy his lecture. (this was back before I was a chronic pain patient) I do remember some things he said though and I wish I could remember his name because I'd definitely contact HIM and see if he would be my new pain doctor. He seemed to have a good handle on the physiology of pain and how to best manage it. One thing I do remember him saying was that "if a person has REAL pain, they are not going to get addicted to pain medicine." And he went on to explain the differences between people who take pain meds to "function" versus those who take simply for the "buzz." REAL pain patients do not need an ever increasing dose of pain med, they do not take more than what's prescribed, they do not ask for early refills, and the most obvious sign that a person is a REAL pain patient is that after taking the pain meds, they get up out of bed and begin to function whereas an addict will just stay in the bed and ride out the "high."

    When I began working on a medicine/oncology floor, I found that to be very true. The cancer patients who had terrible pain, would suddenly get up out of bed and begin cleaning themselves up, go for a walk, and just basically function, after they'd had their pain meds. Some of the medicine patients we had were drug seekers and would lay in the bed and constantly be pushing the call light asking for their pain meds early and getting angry if it wasn't time for any and would often become abusive to the nurses and staff if they didn't get their pain meds every 3-3 1/2 hours when they were ordered for every 4 hours.

    I remember getting into an argument with another nurse once because I had given HER patient his pain meds which were already over an hour late and I heard him crying out from the hall. She told me, "You shouldn't have given him anything yet. He's taking too much as it is and is going to become addicted. He just wants the pain meds, he doesn't need them." I was SO angry with her and said, "That man in there is DYING and most likely will not survive another month. Who the hell cares if he becomes addicted? It is our duty and responsibility to make that man as comfortable as possible." I was furious with her attitude particularly after watching my own mother die of cancer.

    But it's an ATTITUDE...a MENTALITY....that so many healthcare providers share and that's why we as pain sufferers get the shaft, the runaround, the third degree, the reluctance to help, the stigma, and the all around poor treatment. Pain management has come SO far in recent years that there is NO reason that someone should have to LIVE in constant agony.
  • dilaurodilauro ConnecticutPosts: 13,562
    Robin you explained it very well. Jon and others who have been doing this for a long time understand the dynamics.

    I think you can break down the reasons patients take pain medications into two categories

    Those that Need to
    These are the folks that take their medications to get through the day. They need them to be able to function at the best level they can. The pain isn't eliminated, but taking them along with other medications helps manage their total pain. I've seen many of these types and while they are still in pain, they function and are productive. Teachers, Nurses, Programmers, etc. You would never hear one of these talking about needing to get 'high' from their pain medication.

    Those that Want to
    These are folks that want to take their medications every chance they can. They want more and more. Higher dosages. Complain to their doctor's that their current dosage isn't doing anything. These same folks could look like you or me, but in many ways their mindset is the same as a street junkie.
    These folks will lie and resort to stealing other patients medications just to get their high.

    No one wants to be in pain and I dont think there is anyone here that doesnt try working with their doctors to help minimize that pain.

    I have an outstanding physiatrist. She has told me from the day I met her over 8 years ago that she knows when a patient needs pain medications and when they only want it.

    She also totally believes that while a patient is suffering, they should be given the appropriate dosage of pain medications to mange the pain. Now that can vary from person to person, but after a doctor gets to know their patient for a while, they now what is right.

    Some doctors, Robin, like the one you have been seeing determines in their minds if you still need to be taking pain medications and at what levels. But I get the impression, that is done more on a time-line basis then reality. Many doctors feel that after xx months, a patient should no longer be needing pain medications.

    I have been on Oxycontin, Oxycodone IR, Opana ER and Opana on a regular constant basis for 8 straight years without any breaks. Prior to that, over the 30+ years, I was on some narcotic pain medication at 3,6,9 and at times 12 month periods, all depending on what problem I was going through.

    So, I dont think time has anything to do with IF a patient needs pain medications. I just wish that all doctors would see things as they are and not make judgements based on what feat there is out there. But as in life, you get the good and you get the bad.
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
  • workingtogain - like terror said (more or less) no brain fog here. I have been on oxy and Fentanyl patch for aprox 4 yrs now and am studying to get my IT degree ;) WITHOUT the pain meds I would be sitting in a corner crying and would have NO quality of life.

    Ron - Sadly what RobinR has experienced is what ALL the pain clinics in my area are like. Every single one! My PCP who works with some Drs at our local PC wrote them a letter about me saying what a perfect pain patient I am. When they called me they said bring all your pain meds with you or we won't see you. I asked "why do I need to bring pain meds". Their response was "WE not your Dr will be the ones to decide IF you leave here with or without your pain meds". I did not go to appt and my PCP (I live in a hick town so my PCP covers my pain meds to save me for 2 hr each way trip) was very upset with them. He thought the letter he sent them would have them treat me differently. He said they all treat patients like that.

    Before this I DID go to a different PC and the Dr walked in and said "we are in the wrong patients room". Long story short when she looked at my MRI (before she came into the exam room) she expected to see someone in a wheel chair.

    BUT within seconds of knowing she had the correct patient she went on to tell me I was a drug addict and she would never give me pain meds etc etc. She was going to write a letter to my insurance co and tell them to stop paying for them!!! Thankfully my PCP got involved and got it all straightened out for me.
    My point is from my and many others who I know experiences with PC make us fearful of them for our quality of life.

    RobinR - sorry for the thread highjack ;) Some of what I posted was for you though too as I want you to know your not alone in the PC nightmare :hug:

    What have you decided to do?

    PS: My apologies I skipped over your post about trying to find a new Dr. Please keep us updated how you are doing :)
    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.
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  • When I read your post, all I could say is "wow." It shouldn't surprise me though. A thought that occurred to me today as I was lying here on my bed in pain because I still had two more hours to go before pain meds, was that the doctors are all STUPID! I mean, my docs see me walk into their office and I'm not crying out in pain, I'm walking upright, and I tell them that my pain is at a level 3 or 4 at the moment. So they look at me and think "Hmmm...she doesn't need to be on pain medicine, she's fine. Hell she's walking and going to work and pain is only a level 3 or 4."

    Well guess what dumbass....the REASON I'm walking and working and functioning and my pain is only at a level 3 or 4 is BECAUSE I'M TAKING THE DAMN PAIN MEDS ON A SCHEDULE!!!!!

    This is precisely the reason that I'm going to go through with the withdrawal of all meds. Not only because I want to see exactly how bad my pain is without any pain control. But I also want my doctor to see how bad my pain is without any pain control. Yes it will be sheer torture for me and going to work every day may get real tough. But I need to do this. After two weeks on a reduction of just one dose per day (taking 3x daily currently instead of 4x) my pain level has increased up to an average of 6-8 daily. On Monday, I'm cutting out another dose and will only be taking my pain meds 2x daily. I've decided that I will take two doses during the day at about 8:00am and 4:00pm and then nothing at night. On that schedule, it means that I will not take my first dose until after I've been up for about two hours. It'll be hard because by the time I get up in the morning, I've usually been without pain meds for about 12 hours, so the pain is high first thing in the morning. But I need to spread out the doses to try and get the best coverage which is why I decided on 8 and 4. I will stay on this schedule for two weeks and then cut out another dose and be on just 1x daily. At that point, I think I'll try to take my only dose at about 12 noon. I'll do that schedule for about two weeks and then go to every other day for a week, and then nothing.

    So in 5 weeks, I will be completely OFF pain meds. At that point, I'm going to schedule an appt with my doctor and let him see me without ANY pain control at all and see if he still thinks I'm "fine."
  • Good way to explain it, Ron. Your doctor/s must learn you and you must learn to let them know that you are not an addict. I think that my doc knows I rely on my meds and don't depend upon them. After about 8 months with input from both patient (me) and dr, we have found a med regiment that provides me some of the relief that allows me to function somewhat normally. There are those bad days, though ~X( .

    Anyway, my dr requires monthly visits for med renewals. We also discuss whether any changes may be in order, any new symptoms, etc.. I know I am at the point in my "Pain Game" that right now meds are the only options for me. I DO NOT abuse them. I just need relief, so I guess I am a "Need To." Thanks for your comments.
    Rassy

    Rassy's Story
    Under House Arrest Without the Ankle Bracelet :-)
    The remarks I make are strictly my own based on my personal experiences.
  • Good way to explain it, Ron. Your doctor/s must learn you and you must learn to let them know that you are not an addict. I think that my doc knows I rely on my meds and don't depend upon them. After about 8 months with input from both patient (me) and dr, we have found a med regiment that provides me some of the relief that allows me to function somewhat normally. There are those bad days, though ~X( .

    Anyway, my dr requires monthly visits for med renewals. We also discuss whether any changes may be in order, any new symptoms, etc.. I know I am at the point in my "Pain Game" that right now meds are the only options for me. I DO NOT abuse them. I just need relief, so I guess I am a "Need To." Thanks for your comments.
    Rassy

    Rassy's Story
    Under House Arrest Without the Ankle Bracelet :-)
    The remarks I make are strictly my own based on my personal experiences.
  • All I can say Robin is "I will keep you in my prayers"

    I would be a screaming maniac with low doses of meds.

    When my Dr suggested the Fentanyl patch to me I could not complete a sentence with out stopping to wince in pain and do my blowing breaths to try to keep my body from tensing up (like women in labor do - which by the way does work lol).

    I do understand your reasons and will pray for the best out come possible for you :hug:

    Please keep us updated..
    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.
  • 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



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