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Post op pain management disaster

Hello everyone. I hope this finds you all feeling well and living productively. Pain patients, please listen carefully. I'm about to tell you how to ruin your life if you're not careful.
I'm a 52 yo working single mom w 12 yr old autistic daughter. A year ago I had back and neck surgery at the same time. Lumbar laminectomy w fusion and cervical diskectomy, both w instrumentation. I'm full of titanium. The lumbar discs above and below the repaired ones are now failing, degenerative disc disease, hermiated discs. I have medium pain there but the real problem is my hips, legs, toes, hands, fingers. Icy hot pain with numbness and tingling. I drop things all day long. Fine motor skill issues. I haven't worked in over a year and I've filed for disability. I've lost almost everything I could lose, I'm almost financially ruined. I've had interpersonal relationship issues due to my situation causing me to have depression, loss of income, dependence on others for various things, and most of all, dependence on narcotic pain medication. I went from percocet 10, 90 a month to 60 80mg oxycontin and 120 10mg Methadone a month. I get my meds thru my gp. She's not a pain management specialist. I've never been under contract. I was UA'd once at the very beginning. Never UA'd again until 5 mo ago. I was UA'd every month for 5 mo. I knew something was up...staff seemed different w me, odd. Distant. So did my Dr. ( she is actually an ARNP w an overseeing MD ) The ua's came on the heels of my candid disclosure to my dr that the percocet had lost it's efficiacy. I was honest and open about my pain levels and my use/misuse of pain meds, meaning that I was taking two at a time rather than one. I told her that I was inclined to dose early. My pain levels just weren't manageable. So we began trying other medications. Dilaudid, oxycontin, methadone. No one told me that I had to go 30 days with the new medication whether it worked or not. After a week ir two of the dilaudid I went back and told her it didnt work. I asked to go back on the percocet. We wound up settling on oxycontin 80mg twice a day and Methadone 20mg twice a day. It has worked fine unless I overdo it ( I live on a small farm ) and need a dose before its time. Ive been honest w my dr about that too. I was told it was in my best interest to be totally open w her.

Last month I had a trip away from home. I rode in a car for 9 hours to and 9 hours home again. I was miserable. I packed what was left of the script of dilaudid and used a few of them on the way home. Two days later I went for refills. I told my dr I had taken the dilaudid. I told her that the car trip was excruciating on my hips, legs, and lower back. She seemed to not remember prescribing the dilaudid. Im sure she could find it in my records if she looked. She gave me a hard look and said I wasn't supposed to do that. No one told me I couldn't take something she had prescribed before. I had run out of the oxycontin. It was two days before refill time.

I got a letter from the clinic in the mail several days ago. I've been dismissed from my dr's care due to abnormal drug screens. The first one had phentermine. ( I bought ut online after I had my youngest - it was legal ) She never told me what was wrong with the sevond one but it might have been that I wasn't showing any oxycontin. ( I told her several times that the dosing wasn't enough. She knew I had a problem making the meds last a month ) The third one showed Dilaudid. I disclosed that I took some on the car trip because I was miserable with pain. The oxy wasn't helping. I ran out two days early )

I now have to face the fact that my insurance doesnt cover pain management even if I could find a dr willing to prescribe to me. The DEA has made it so hard for drs to prescribe narcotics due to abuse. They are afraid and I don't blame them. I was never on contract and the terms of being allowed to have narcotics were never outlined. I didnt understand that asking for a different medication before 30 days was up was a no-no and a red flag for addict behavior. I didn't know that taking the other medication she prescribed wasn't allowed. I was told to be honest and I was honest. I feel it was my undoing.

I don't know how I am going to survive this. There will ve withdrawal. There will be lots of pain. There will be bad days and I won't be able to take care of my daughter or our animals. I might not be able to get her to her appointments, therapies. Or school. I'm terrified. I'm sad. And I'm upset and feel betrayed by my dr who I thought would take care of me through all of this. Last month when the nurse handed me the UA cup for the fifth time in 5 months I just shook my head and told her I felt like I was the target of a witch hunt. I was assured that lots of patients were being tested and that I was fine and to stop stressing.

Don't take your pain meds for granted. Don't think you have a margin for error. You don't. Don't believe staff when they tell you you're fine as long as you are honest. You arent.

If anyone can advise me as to an approach I might take with my prescribing dr I would be most thankful. I'm wondering if I might be reinstated if I went on a contract and tested 'normal' everytime. I never had a clear understanding of what could cause a dismissal. I dont do street drugs. I was honest about how I took my meds. I feel shattered. I feel like its all over for me.

Thanks for letting me share this long story.


  • Thank you. Hindsight is 20/20 , so they say. However, I was never under contract. I never signed anything. No list of do's and donts was ever given to me. I didn't know many of the rules....I should have been informed but I wasn't. I honestly thought that I was doing fine.
  • LizLiz Posts: 7,832
    I am sure someone will be able to give you some help regarding the situation you are in when more members have read your post. I am not in US so I posted the link to help in the meantime.

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • Liz said:
    I am sure someone will be able to give you some help regarding the situation you are in when more members have read your post. I am not in US so I posted the link to help in the meantime.
    Thank you Liz. I've been browsing the links. There is good information there. I wish I'd had it a year ago.

    Anxiety and fear are really working me over. I know it will be impossible to find pain management now. I always said that if they ever take my medicine it's all over for me. I feel like it's over now.
  • sandisandi Posts: 6,343
    edited 09/16/2014 - 8:01 AM
    And I will warn you before you read further, you aren't going to like what I am going to say....I am not trying to beat you up here, but you need to understand the seriousness of what you did and the risks you took that could have easily cost you , your life, and cost your doctor her license.
    You are on a ton of medication- or were.......160 mg of Oxycontin, and 40 mg of methadone is an awful lot of medication for someone. You must've been taking more of the Oxycontin per day than two tablets, and more of the metahdone than what you have stated here, to run out.
    The bottom line in the world of pain management is that the patient , with or without a contract, is held accountable for their medications and following the directions given to them , no matter what excuses someone may have for taking more. You have been in pain management long enough to know that you are not supposed to take more than you are prescribed, or earlier than prescribed, or run out early. If the dilaudid didn't work for you, why take it when it was no longer prescribed to you, other than you ran out of the percocet and oxycontin? Medications which are currently not prescribed to you are to be discarded, not kept around for use later or as a fill in to get you through to your next visit/refill. .
    You were lucky in that your primary tried to work with you, in almost all other practices , you would have been dismissed the first failed urine test.
    As you can guess, ignorance is no excuse for doing what you did, nor is increased pain, nor is travel by car , or work around the farm.
    Pain management is not about elimination of pain, it is about using many methods and modalities to decrease the pain to a manageable level. It is about using ice, heat, massage, stretching, excercises, yoga, swimming, pilates, etc to ease the pain. OTC medications and patches, ointments and creams, distraction techniques, etc.
    There is no amount of medication that will eliminate pain completely, once you have chronic pain, so adapting what you do, how you do it, and making changes to your lifestyle have everything to do with being part of learning to live with chronic pain.
    There is NEVER a good reason to take more medication than you are prescribed, nor to self medicate, nor to take medications early or take meds previously prescribed to you, or run out early.
    The oxycontin should have been used to treat your every day pain levels, and the percocet used to manage any breakthrough pain on an OCCASSIONAL basis. BT medications are never supposed to be used every day, or even on a regular basis, whether that is once a day, or four times per day. You should be using other modalities, including stopping to rest, to manage the start of a flare before you ever reach for the pain medication bottle.
    As you found out the hard way, reaching for the bottle to manage the pain leads to misuse, and abuse, and running out early.
    As far as the withdrawal goes, the worst of it is over in about 5 days, with the third day being the worst and things improving as the days go on. Unfortunately for you, the methadone has a longer half life than other opiates, so your withdrawal may be a bit more drawn out than it would be otherwise. Gatorade, immodium, restless leg medications ( herbal supplements ), bananas for the potassium, warm baths and showers, tylenol pm may all help you through the coming days.
    As far as getting back into pain management goes, I think that it might be wise for you to consult with an addictionologist first.....and perhaps a therapist who works with chronic pain patients and can teach you some coping techniques and excercises to help you develop other tools to manage increased pain levels might be a good idea.
    You may find that you are surprised at how much better you can cope with the pain , without the influence of the medications. Many people are, especially when they have been on them for some time.

  • patient oneppatient one Posts: 7
    edited 09/16/2014 - 8:47 AM
    Thanks for your reply. Im processing....not quite sure what to say. I'm not sure I agree with you....not disagreeing either. I appreciate your advice. I'll definitely use the remedies you mentioned.

    The thing is, I've never needed long term pain meds before. I am a little ignorant in regards to their strength....and all of the protocols associated with prescribing. Like I said, I had to documented plan. No real guidelines.

    I feel pretty bad about all of this. I think I really screwed my life up.
  • Ps - I live rural....quite a drive from the nearest city. My dr's clinic is in a nearby small town. There's no way I could drive to the city often for treatments....therapy, etc. All of that time, effort, money, goes to my daughter and her appts. Which just enhances what I said about messing my life up. I was able to do all of that running for her because I had pain relief. I don't know what will happen now.

    In my defense, there is farm work and maintenance that HAS to get done. I am a single parent. Who do you think is going to tend to things if I don't? I don't have the luxury of a sedentary lifestyle. I have to do things that push my limitations. I realize I was on alot of medication but my body had built up a tolerance. It sure didn't feel like alot of medication.

    I will consider calling an addiction specialist. I plan to talk to my dr and see if she is willing to reinstate me on good faith that I've learned a big lesson and I won't make these mistskes again.

  • I get it that you feel bad, and don't know what to do.......and you are between a rock and a hard place. I didn't say what I said to make you feel worse, but to ensure that someone else reading doesn't repeat the same mistakes.
    One of the big reasons that I am not keen on having a primary handle pain management is because of situations like this one. Methadone is never meant to be used as a breakthrough medication, and it appears that she/he didn't bother to explain the risks associated with taking too much methadone. Because of it's long half life, it builds up in your blood stream and continues to build with each dose. You could have easily overdosed.
    Then there is the fact that you were short changed by using a primary care doctor and deprived of other modalities that may have helped to reduce the pain levels because she/he is not versed in the many modalities offered in pain management.
    Injections, etc, biofeedback, yoga, strengthening, and so much more that could have helped you avoid getting up so high in dose, which decreasing your overall pain levels.
    Extended release medications, used properly, are dosed to manage your all day, every day, baseline pain levels. Once the proper dosage is reached, your reliance in breakthrough meds should be limited. It does take time to reach the proper dosages and the right combinations of medications, but once you do, the overall benefit is so much better than the ups and downs that come from relying too much on the immediate release medications to get you through.
    I feel for you.......and for your daughter. You are in a difficult situation, and the reason that I suggested that you see an addictionologist is not for the reason that you may think.......they are versed in not only pain management but in other coping modalities as well, and are the best equipped to decide if your returning to pain medication management is in your best interest, along with being able to recommend to another pm doctor a course of treatment that might help.
    I see that Liz gave you the link to the Do's and Don'ts of Pain management, but I am going to include a couple of others......that might help you to understand how a proper pain management program is supposed to work.


    Do you have neighbors, teens that you can hire to come and help out with chores? I understand that you have certain things that you need to do, we all do....but when it comes to learning to manage our lives with chronic pain, we have to make adjustments and work within the new confines of our bodies. Medications are there to allow you to do things that will continue to damage your spine or other areas of your body, they are there to allow you to function at the activities of daily living, and the rest we need to make adjustments for .
  • Hi Sandi. Thank you for your reply. I have neighbors who always offer their help. I just have a hard time taking it. What you said about medication not veing there so we can push our limitations but to function normally through the activities of daily living resounds. My dr told me that I needed to lower my expectations. I did. But the need to be responsible was still there. I have done what I had to do, taking help on occasion from friends and neighbors.

    Yesterday I read some articles that talked about the short-changing of pain pts who get their PM thru their GP. You echo the points made in those articles. I don't find fault with my dr....she only prescribed to me because my insurance doesn't cover specialized PM. Plus, there are so few drs willing to prescribe narcotics these days. The risks are too high. However, a little more information and dialogue about these other modalities you mentioned would have gone a long way with me.

    I woke up this morning sad and anxious. I am humiliared beyond belief. This small town has a way of making you feel like everyone knows your business, and they probably do. I'm scared and uncertain about our future. Dreading the very minute that I feel the first pains of withdrawal, knowing I'll have to sweat it out alone, hoping my daughter can stay with her dad for at least a couple of days. I don't want to do this. It's my worst fear for myself come true. For what it's worth, my back surgery failed. I've had worse pain post op than I ever had before. I wish I'd never had the surgeries.

    I guess it's my day to whine. Don't worry....I know I did this to myself. That's the hardest part.
  • that works .Keep gatorade on hand, and perhaps your doctor might be willing to prescribe some clonodine to ease the withdrawal symptoms. It is a blood pressure medication that is sometimes used to ease withdrawal symptoms, and many people have said that it eased the withdrawal symptoms. ZZZquil helps with sleep. Hylands restless legs ( OTC ) is supposed to be very helpful for the muscles cramps that may come. Immodium eases the intestinal issues. Warm showers or better yet , baths, help too.
    Withdrawal is similar to the flu, only a bit worse for the second and third day. In your case , it may be the fourth day simply due to the methadone. I am assuming that you only took methadone for a short time so , you may not have any longer withdrawal than you would for any other opiate. The rest of the symptoms include the runny nose, watery eyes, yawning, etc.
    You CAN do this, and you will get through this. Try over the counter meds to see if they ease some of the increased pain, and you will have some increased pain.....try the topical creams and OTC meds to see if they help.......if advil or motrin doesn't work, try naproxen...........for me, it's easier on the stomach and seems to work better....stay hydrated, and eat things like soup, eggs, toast, crackers with peanut butter, etc.
    Believe it or not, I am truly sorry that you are in this position, and hope that things work out for you.
  • Thank you. I'm sorry too. I appreciate your advice and recommendations. I am a heart patient too, so I have Clonidine. That's another concern...withdrawing suddenly rather than tapering, and how my system will respond. I've heard you can die if you stop suddenly, especially if you have pre-existing health problems.

    One more thing. I wrote a brief letter to my dr, apologizing for my carelessness and possibly putting her at risk. Even though I feel I was blindsided by rules and 'don'ts' that were never explained to me, I still own the fact that I did run out of meds 2 days early on my trip out of state. I wish I had known that I wasn't supposed to use meds prescribed before I started on the two meds ive been taking for the past few months. ( btw...I've been on Methadone for at least 6 months ) I was told by clinic staff that re the UA, as long as I had a prescription for whatever the test showed, I was fine. Yet they cut me loose for taking something she prescribed me. It's confusing and seems unfair. I was never given any rules to follow, therefore I didn't know I was breaking any rules.

    If I dwell on it for too long I get pretty upset. Even angry. It's better to move on.

    I wish someone who has had a similar experience would speak up. I'd like to know how others managed their way through this kind of problem. It sure feels like the end of the world to me.
  • It is uncomfortable, as I said it is a bit worse than the flu and lasts about as long- 5 days or so......the second half of the third day will most likely be the worst as far as you feeling not good. Then in the morning of the 4th day, you should start feeling a little better and things will continue to improve as you get further away from this.
    I'm sure that others will chime in.....you aren't alone, there are many others who have made similar mistakes and found themselves in similar positions.
    It used to be some years ago, that a patient taking an "old" med that was prescribed to them for a previous problem wasn't seen as a red flag, but that was then........now, it is seen as a huge problem......even if it was prescribed for the same condition, but a few months or weeks ago, once you are taken off it, for whatever reason, you are supposed to dispose of it, and not use it, because legally you no longer are being prescribed it, so taking it again sets off those red flags. Urine testing for compliance wasn't something that was done some years ago, now it is a regular part of pain management and it is not necessarily a bad thing, for many reasons.
    I am surprised that your doctor put you on methadone with a cardiac history......it can prolong the QT wave complex in some patients, so it is supposed to be used extremely carefully in someone who has a history of heart issues.
    I sense your embarassment, frustration and fear......but you can do this and you will find a solution that works for you.
    One thing that I do want to caution you about is when you do decide to find another doctor, make sure that you are honest with them about what happened and why....trying to cover for it, or hide it will backfire , and you want to start a new relationship with a new doctor on the right foot......read the contract through and take a copy with you, and refer to it any time you have a question. Ask questions of the doctor at your visits.....what do I do if? In the Dos and Don'ts thread, there are a list of questions to ask when you see the PM doctor.....and the first visit to pm thread also has more.....
    I am here if you need or want to talk.
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