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It's over. (My life, that is.)

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Old 08-25-2012, 06:28 AM   #1
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Unhappy It's over. (My life, that is.)

Some of you may remember me - I posted a long time ago about my PM practice's policy regarding BT meds. They instituted a new policy of no more BT meds for anyone, no exceptions. At the time, they took me from 3 a day down to 1. I went back in with a pain journal and my mother as backup, and the PA made an exception for me, bringing me back up to 2 a day.

They gave me misinformation about why they were discontinuing treatment with BT meds. Every single one of you warned me to get out of there; that it sounded like they would eventually try to get rid of me. I had my medical records sent to the other practice in town, and they didn't want to take me because my condition is rare and they don't know much about it.

Well...guess what? The PA who made an exception for me is gone (is working somewhere else). I finally met the doctor who has taken over the practice. He isn't truly "pain management" but rather "physical therapy/rehab."

He makes exceptions for no one. He is cold and callous. I could have been dying at his feet and still receive no sympathy. He also seemed to have a smart answer for everything, almost as if he had rehearsed it.

Me: "I don't feel comfortable trying (meds I've tried before and failed) because my insurance only covers 5 meds a month and I would have to pay for new meds out of pocket."
Him: "Well, that's one more good reason to get you off the breakthrough!"

Me: "You do know that dependence is expected and normal in pain management? You're using the term as if it was a bad thing."
Him: " is a bad thing."

And every time I said something about how I tried to decrease before and it went horribly, or how having a breakthrough medication is still considered to be the normal course of treatment, or ANYTHING else, the response was, "Well, we now know that breakthrough medications just don't work. They just don't work."

Here's the kicker: He asked to look at my pills. First time this has ever happened at this practice. No problem, though. I handed them over. He kept insisting that I was a day short on, you guessed it, my breakthrough med. I was not, and I explained multiple times how I wasn't short. He would have none of it, and insisted that I was indeed short, and ended the conversation with a stern, "DON'T DO IT AGAIN." I didn't do it in the first place!

And we capped off the visit with a UA. No problem. Standard procedure - everything should be there that should be there, and nothing there that shouldn't be there. Then, I did some research on this practice when I got home. Patients treated there for years with no problems failing UAs for the first time ever. Patients receiving sudden letters of dismissal for no good reason.

I have this inescapable feeling of impending doom...of being blacklisted from being treated anywhere.

So I'm pretty sure my life is over. I have to start looking into other practices in the east-TN/NC/VA area. And if I can't find anywhere else to go, I have to hope they will taper me off of what I'm currently on.

I have never been more scared in my life. I'm terrified to even look elsewhere because of what's already taken place here. I seriously do think I'm done.

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Old 08-25-2012, 04:00 PM   #2
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Re: It's over. (My life, that is.)

First I would like to say I am so sorry you are going through this but there are a few options you can take. Why don't you contact both your family doctor and the national foundation of the disease you have and see if they can recommend a new pain management center. If your UA does come back funky and they dismiss you go straight to your family doctor and ask if they can run another test (its slipping my mind, but I know there is a type of test that can test for long term drug use). I think it would also be a good idea to invest in a cheap day planner. Write down the date and time you pick up your scripts and write down everytime you take a med so there's no confusion about the number of pills you have taken.

Good luck with everything and unfortunately it sounds like you may have to travel to see a new PM but from what I have read on here it seems common to have to commute.

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Old 08-25-2012, 04:47 PM   #3
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Re: It's over. (My life, that is.)

So sorry you are dealing with this. I know the fear/uncertainty must be tough. I agree it is time to find a new doctor/practice. Its one thing if they had a policy for no breakthrough meds (although ridiculous), but it seems like this doctor is generally unhelpful and actually has misinformation on several topics. I'm confused why a pain clinic would refuse someone who has a rare condition they are unfamiliar aren't asking them to treat that condition so much as to treat pain. I hope you can find a true pain management doctor who is caring and helpful.

You may have to drive further, but it can be worth it. Hope it doesn't come to having to taper off. I wouldn't be scared to look for a new doctor because you haven't done anything wrong. Worst case they put something unfounded in your records, a new doctor may allow you to explain it. I don't see how they can get a UA to show dirty unless they mess with the printed lab results or switch a patient's urine sample? I don't get why a doctor would go to this length. If they didn't want to treat a patient anymore, do they have to even give a reason? Best wishes.
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Old 08-26-2012, 09:34 AM   #4
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Re: It's over. (My life, that is.)

Hi oddest, I wouldn't panic just yet, nothing bad has happened yet. I don't know your docs details, however their are only 3 specialties that have board certification in pain management. Physiatristry, Anesthesiology, and Neurology. Your doc is a physiatrist so unless he simply didn't go through the board cerification process or a fellowship in PM. He
Should be as qualified as any BC PM doc. What I wouldn't do is get into a knowledge battle with your doc as far as standards of care. No doc is required to use BT meds and one board may have different standards of care. I do think you are misinterpreting the purpose of standards of care if you think any BS PM doc is required to prescribe BT meds.
Good luck and don't panic yet.

Last edited by Shoreline; 08-26-2012 at 10:04 AM. Reason: spelling, correcting auto correct on a new tablet

Old 08-26-2012, 11:10 AM   #5
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Re: It's over. (My life, that is.)

I'm panicking a bit because of one thing in particular he said, "We really only give ANY pain medication to people who are having surgery."

Their ultimate goal is to get their patients off of meds entirely.

He had a bad attitude, was horrible to work with, and doesn't treat patients as individuals. This is not ok. Plus, he accused me of doing something I didn't do; I tried to prove it to him, but he kept insisting I was wrong and just got louder and more belligerent the more I tried to stand up for myself (and the more my mom tried to back me up - that just made it worse even though we were within our right to do so and weren't getting loud or defensive). That is REALLY not ok.

I get that not every doctor has to do PM the same way, but this doctor and the practice is now becoming an obstacle and source of extreme stress. If he is no longer willing to work with me, then I am no longer willing to work with him.

I can't be the only one who would interpret being falsely accused of something that could negatively affect my future care as a bad thing.

The attitude was also not one of "we're genuinely trying to help you and do what's in your best interest" - mostly evidenced by the fact that he ended the appointment with a nasty, "This is the way we do things here, and you're just going to have to live with it." Nice.

Last edited by Odesse; 08-26-2012 at 11:13 AM.

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Old 08-27-2012, 11:39 AM   #6
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Re: It's over. (My life, that is.)

Dear Odissey,

I am really sorry you have to deal with all this; I can understand your frustration, your fear about your future treatments.
I am a really puzzled why any DR or any clinic wouldn't want to have you as a patient or refuse to treat you b/c you have rare condition. I have couple rare conditions and had never a problem to be treated or Rx any drugs for it by any Doctors I went to. Very strange what kind practice this is, is in it?
I have to tell you something though; I am disabled since 2006 and read so many posts, so many different people had problems with health issues, treatments... all of us learned one thing: you NEVER have any arguments with any PM DR's, you always want to end on a friendly note even if you weren't treated the way you wanted to.
Reason? The thing is, no matter where you go now, every PM in a country will know about your argument, about your test results. Due to problems and death from opiates, now every PM DR has central system on computer where they can look up every patient who was ever on any type of pain medication and under PM care. Same way they can look up every patient on Rx opiates at any US Pharmacy and see what and when was Rx to you, me or someone else.
Thinking that you may change the state and they will not have your information is naive and not truth, they will know everything about you. Trust me dear, I understand your pain, it's bad when we can't say how we feel, we can't say someone is doing wrong or can't stand up for ourselves. But sometimes in life we can't help it, we must obey whatever this is just to be able to continue our treatments, and play by their rules. After all, they don't need you, you need them.
Urine tests show how we take our medication to the T. Before I give it to them, I have to sign the papers where they write every drug, every dose, every vitamin I take. This is what exactly they see in our urine. They can tell if you take your medication as it was prescribed and if your DR sees something is not right, he can refuse to take you as a patient anymore. When I signed a contract in 2003, all what I just said was in that contract. It said that PM DR may not explain to you why he refuses to see you anymore but it will be on your records which you can ask for at any time.
My PM and I have great and trustful relationships, I never betrayed his trust, but guess what? When my first Pharmacy closed its doors over night, they still owed me half of the dose on my Rx. I was panicking and worry how will I explain this to my PM who works in another state (I go to NYC)? I called the office, they told me No problem and sent me another Rx. Than I received a letter from the closed Pharmacy that due to my PM DR's letter who asked for explanation they asked me to come and pick up my medication. I got medication and brought it to my PM asking what shell I do now? It means when I said my Pharmacy closed and still owes me meds, no matter how much he trusted me, he still sent a letter to make sure this is a case. I respect that; I wish every PM would be this way, maybe less opiates users will die from overdose and less opiates would be sold on a streets, and people who really sick, who really suffer from CP wouldn't have bad reputation just b/c they have to live on opiates.

I had evaluation by insurance of the lady who hit my car. I brought with me all my records, scans. I handle them to a DR who set in front of the computer, but he said he doesn't need it, all information about patients on opiates in central computer. He just needed my name; in one second he told me who is my PM, what drugs I am now and the Pharmacy I used. Not only Pharmacy I use now, but the one which closed 3 years before!!! My diagnoses and how often i see my PM. He also he saw all my blood/urine tests done for all the years I am on opiates. I was shocked, it's kind of scary, is in it? Feel like nothing is private anymore.

I wish you to find another DR who will listen and understand. I hope you will have good relationships with him, b/c no good treatment, no trust can be build on hostility and distrust.
Don't take me wrong, I hear you believe me, but just a friendly advice for the future: if you know you need your treatments, if you know you can't live without Pain Management, somehow try hard to have it civil. If you don't like the way they treat you, just ask for your records and find someone else without telling him how to run his practice; they still will run it the way they want, but it will cost you big time.

Hugs and best wishes dear

Old 08-27-2012, 01:46 PM   #7
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Re: It's over. (My life, that is.)

It kind of seems odd to me that a PM doctor, running a Pain Clinic is walking around saying his goal is to get everyone off meds (or was that BT meds, sorry if I misunderstood). What is his practice going to do exactly? Sounds pretty strange to me but... I know you're in a bit of bind with this guy but after a couple second chances, things don't improve, you really do need to move on. Get on that research now as opposed to later, just in case. I do wish you all the Best!

Old 08-27-2012, 08:37 PM   #8
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Re: It's over. (My life, that is.)

I believe that there are some clinics like that out there. Some think opiates are for short term use only, such as after a surgery, or when a patient gets to a certain dose, that is it (no consideration of tolerance). I have interviewed two clinics in my area which when they saw my meds/doses, when I asked what their treatment plan for me would be, they said they would taper me down--they wouldn't even consider keeping me at that dose level.

And here I was looking for a better treatment plan, as I had hit my primary care doctor's limit. I'm fine with a clinic having their own way of doing things, but I think its ridiculous when there are patients who have tried most everything (and are willing to try anything suggested) and there is a treatment (opiates dosed with consideration for tolerance) which could be helpful, yet they won't go there.

They didn't have any new non-opiate treatment ideas for me either. They had dose limits in their practice, and said that for a lot of their patients they didn't even prescribe opiates. Makes me feel lucky that I was even able to find a place which considers what works and doesn't work, and comes up with a treatment plan with several different prongs so the patients has the best chance of meeting their goals. Best wishes.
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Old 08-28-2012, 09:25 AM   #9
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Re: It's over. (My life, that is.)

Sorry to hear about your issues...

It makes total sense if this new Dr. that has taken over the practice is not an actual Pain Management Dr. and he only handles physical therapy/rehab in that he doesn't prescribe opiates for chronic pain. Every Dr. has the right to decide what type of treatment they specialize in for their patients. Especially with new regulations/laws in many states now and in the next years, unless a Dr. is specifically trained in pain management, they will have to go through more training and pass more certifications to keep their licensing to prescribe controlled substances. This is why many are deciding to not do this anymore.

Unfortunately these things happen with Drs. moving or retiring. All you can do is try to seek out another actual Pain Mgmt. Dr. to take over your care.

I'm not sure about trying to look in other states though as my understanding about most state laws regulating opiates...A Dr. will only prescribe and treat those who live in the same state. So you need to make sure of this when you speak with any of them over the phone about treatment.

The key is not asking any new Drs. if they prescribe opiates....But asking if they are a comprehensive pain clinic and use all modalities to treat a patient. If they say yes, this means that they are open to everything from PT, injections, and medications.

Also, you do not have to give a lot of information over the phone to them as that is against the HIPAA law. You just need to say that you are a chronic pain patient and your Dr. has moved on from your practice and you are seeking out a new Dr. to with whom to build a new relationship.

After my 2nd, terribly done cervical fusion...I had to go on quite a few different appts. to find the PM and Neurosurgeon that I have now.

Maybe I missed it in your post...but have you requested copies of your medical records from this place yet? You need to do this so then you will know what is going to be sent over to any new PM office.

Keep trying and try to stay positive...I would think you will pass your urine test fine as you take the medication as prescribed.

Good luck...

Old 08-29-2012, 12:18 PM   #10
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Re: It's over. (My life, that is.)

Thank you all for your advice!

I just wanted to clarify: I was never hostile to him. He was hostile and loud with me and my mom. I attempted to get clarification from him on some things and give him my opinion of what has worked for me and what has not. This is always ok with any doctor. I'm not just going to sit there and not say anything. I'm not going to be nasty, either. By the time we left the office, we were so berated and beat down that my mom and I could only keep our mouths shut and our heads down.

I have not requested my medical records from them yet. I will do so as soon as I can, although I'm scared to death of what was written about my pill count. After he insisted I was short by a day, I took out the pills and counted them for each day, indicating quite clearly that I had enough and was not short. There was no miscommunication regarding dosing - the bottle said one pill 2 times a day, and he said one pill 2 times a day. I counted them out in front of him and it reflected this. He continued to insist that I was wrong. I gave up. I just shut up and let him think what he wanted to think, because I could tell that trying to show him otherwise would have just made the situation worse for me.

As for the UA, they had me tell them when I last took my meds, and I signed the same form I always sign, so it should be fine. I was precise when telling them the times I took my meds (long-acting: 9:15 the previous night and short-acting 4:33 that morning). If there is any problem, it's not on my end.

I was in shock for the entire thing, so other than getting clarification from him and responding to things he said to me (and accused me of, in quite the exaggerated fashion - he almost seemed happy to be accusing me of being short...he even had a smirk, confirmed by my mother who can actually see people's faces, unlike myself), I never actually argued with him.

It was a disaster all around, and the experience made it abundantly clear that I can no longer make things work there.

Old 09-04-2012, 05:35 PM   #11
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Re: It's over. (My life, that is.)

This is one of the things that makes me so mad about the new atmosphere surrounding narcotics. Yes, doctors can run their practice anyway they want, but to be snarky and smirkey with a patient who through no fault of their own is tolerant to a medication. Fine OK, the doc doesn't want to prescribe narcotics, but they can be nice and compassionate about it. Maybe help find a new doc or clinic that does use medication. If nothing else be compassionate for goodness sake.

I am sorry you were treated that way! There is absolutley no excuse for it. We deserve to be treated with respect just like any other patient. It still fry's my hinney though because you will not hear a doc say he won't prescribe insulin or a beta blocker!

I hope you find a good, compassionate doc who treats you right!

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