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What you want you doctors to know-part 2 -Chronic pain patients bill of...
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What you want you doctors to know-part 2 -Chronic pain patients bill of rights

OK so I took some of the input I got here, and I read through many posts and some of the archives, and I met with several doctors and administrators, including the medical director and the wellness director and the CEO of one of our community health care systems. They are interested in working with me to improve their systems for dealing with chronic pain patients. With no other group of patients do we see this hostility between doctors and their patients. I've caught some of it already. Some of the doctors went off on me with their horror stories and think I am being naive about the depth of the problem and some on this site have suggested that I don't understand what chronic pain patients go through. I have been a chronic pain patient for thirty years and my wife is the above mentioned CEO. I have seen and experienced a lot of what chronic pain patients go through. And I am trying to help here. We have a system in crisis and what's happening here is coming to where you live too if it's not already there. The largest PM clinic in our state has closed to new patients and the organization that provides health care to the homeless lost their ability to prescribe narcotics. This has caused a chain reaction where a lot of doctors and the other large community health organization have also had to close their doors to new patients. This has caused the remaining providers to be under a lot of pressure and they need to find a better way of dealing with this or shut their doors too. This is causing a lot of suffering. This week my wife was trying to help a lady who had been on pain meds for years. She was angry with her doctor and went to find a new one. Well, needless to say she found that was impossible and last I heard she had gone to the ER where they gave her a referral to the state rehab clinic - the one with the endless waiting list. It is situations like these that cause me to want to help. I know that the problem might be too big for me to help at all. I might just get flamed out here and have a bunch of doctors let loose on me with their frustrations. But I do have access to this one system ( more than a dozen clinics ) and the people I am dealing with are compassionate and want to help, and we already have interest from the largest provider system in the state who want to be informed if we come up with something better than their current narc contract. So what we have in mind is a chronic pain patients bill of rights. Please, can anyone help with concrete suggestions for what we would include in this that could address the most serious concerns? I have doctors who are on board with this idea and would like to see more consistency among doctors in how they treat their patients. They are willing to set up re-training programs to give all their providers a better education on the problems faced by chronic pain patients. Some are a little resistant to this however and they all insist that it will have to be accompanied by better understanding on the part of patients about what their responsibilities are going to have to be to help deal with the epidemic of problems that accompany narcotic prescribing. What are patients willing to do to help with this? How can we be more effective in educating the patients? And the problems are huge. There is an enormous black market in pain medications everywhere in the country. I am looking at a DEA report on the retail price of pain meds on the street for the month of August for California. $10 - $120 per pill for Oxycontin, $10 - $75 for Fentanyl patches, and so on through every pain pill I've ever heard of.. Every one of these pills came from someone who told their doctor they were in pain. Now that wholesale doctor shopping has been curtailed through pharmacy reports distributed to every provider we actually have gangs that recruit senior citizens with legitimate diagnoses to go in with MRI's and cat scans and a script to follow to maximize the amount of meds given. But every study I've seen indicates that the criminals provide a small percentage of the illegal pills. Most of them come from people with a legitimate reason for pain who are selling a portion of their pills, often to be able to afford their other medications. When a doctor asks you for a drug test it is usually an across-the-board attempt imposed from above them to find out who is NOT taking their meds.  Doctors are under intense scrutiny from the medical establishment and law enforcement to be able to justify every narcotic prescription. I have noticed on this site that some patients do not understand the laws and regulations that their doctor is operating under. I've seen patients accuse their doctors of trying to pad their bill by making them come in for an appointment every month. Are they aware that the laws have changed to require patients who are receiving narcotics to come in to pick up paper scrips in person each month? No more call-ins and no refills are permitted. And while some doctors would allow their patients to come pick those up at the front desk, their insurance companies began to demand that an exam be done for each scrip. Doctors are required to make attempts to find other ways to control pain. When they are called before the pharmacy board they need evidence that they tried other methods besides narcotic maintenance to control pain, and while I realize that it is a giant hassle to feel like you are being asked to try experiments on your body when you know that the pills work, to accuse the doctors of just trying to sell you expensive treatments to make more money is in most cases going to be unfair. In fact an unwillingness to try other approaches is on the list of signs of addiction that the doctors are supposed to look for. This is one of the issues we might deal with in the patients bill of rights. Ironically, one of the most vocal groups pressuring doctors to stop prescribing for chronic pain are ex-pain patients. All you have to do is go over to the substance abuse forum to see that many people accuse their doctors of causing them to become addicted, "If only they had told me that these were addictive I never would have taken them", is something I've seen many times and in fact I've seen many people express on that forum that doctors are irresponsibly prescribing narcotics willy-nilly (again just for the money) and need to be prevented from prescribing them at all. These are the patients, by the way, who win lawsuits against their doctors and make it much more difficult for any of them to prescribe for pain. Anyway, I could go on but I think you get the idea. I have good friends who are compassionate, caring doctors who are frequently fighting for the rights of their patients against this array of forces and yet they often get accused, unfairly, of all these things I see people accusing their doctors of on these forums. But if we can come up with a way to do this better it can be implemented in this system, affecting hundreds, maybe thousands, of patients, and perhaps even have influence beyond that. If any of you understand what I am trying to do and could contribute specific coherent ideas I would appreciate it very much. Thank you.
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535089_tn?1388447159
Hello kolo:

After reading your legnthy post, I took the liberty of reading your other posts..maily directed to Substance Abuse and as I was reading, I could not find anything that told me what qualifies you to act on behalf of Chronic Pain Patients and why you are taking opiates in the first place.

I am always one to hop on the band wagon for Chronic Pain Patients...I am one myself. But before I stand along side the band leader, I would like to know what qualifies you?

Maybe you could tell me what you suffer from and your reason for your fight.

Thanks,
Mollyrae

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Avatar_m_tn
I agree with Mollyrae. It's not that I don't beleive you, it's just to make sure you are legit!
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Avatar_m_tn
Well, I was hit by a drunk driver who ran a red light. The crash tore off my foot, crushed my leg, and broke my back. I had multiple surgeries to reconstruct starting in 1980, the latest one was in 2005. So that's 29 years of being on and off pain medications. I'm not particularly qualified for this but I do have the ear of people who were looking for solutions in the face of pressure and I simply asked them to consider the views of the patients before they do anything drastic. This is not the only place that we're asking for input but I did hope that there were people here who could contribute to this dialogue. And it seems clear to me that better dialogue is needed. Right now decisions are being made with almost no input from those most affected. But frankly, the hostility on both sides is too deep. I mean "pill nazis" is what I saw here the other day and some of the doctors seem to think that all their pain patients need to be treated like infants. But this all arose from one conversation where a few of us wondered if it would be possible to do better. The other people in the conversation had the power to do something about it, my contribution was simply the point of view of a patient.
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Avatar_m_tn
I'd say you certainly "qualify"!  I had thebest doctor in the world recently retire. He was mypain doctor for many years. My new pain doctor is a "pill nazis"! I don't mind the drug tests, monthly appointmens, etc. It's the statement he doctor makes every visit - "You are on a very, very high dose of narcotics". I explain (every month) that  didn't just start taking huge amounts of narcotics. I started off with small dosages. We tried different types (original doctor) of narcotics before raising dosages. We finally found out what helps me. Every month we go through this. I think it's a combination of mistrust, doctors not beleiving patients pain, and yes, some patients scamming the system.
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535089_tn?1388447159
Myself along with many others have great pain management. I have never had a problem getting pain relief. My Medical Records are well noted on the disability I suffer from.

It's hard for Doctors to prescribe when the patient and the Doctor do not have a relationship. That is generally a must. Granted there are those who do not have good pain management but I feel that this is only a handful.

Please do not think I'm second guessing you...I am going by your interest in Substance Abuse and your posts with that forum.

What health organization are you working with?
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230262_tn?1316649534
yep that was me who started calling the PM's Pill Nazi's..thats been my experience with them and everyone I know who has been to PM. They forced me to take a urine drug test that cost me 442$. Ive also had to endure many steroid epidurals and trigger point injections, months of painful physical therapy which was agonzingly painful and did not help at all- only made me hurt worse, etc.     btw, the having a good relationship with your PM doctor was laughable to me- everytime I went to their clinic, I was seen by a different doctor/nurse practictioner. In fact years ago, this is how I almost got into trouble! My regular doctor got a letter from someone (the DEA?? not sure) stating that I had gotten narcotic RX's from MANY doctors over a 6 month period and that i was being red flagged for doctor shopping!! I had not ever gone to a different doctor- they were all from the same stupid clinic but because the fact that I was just a number to them, i was seen by a different one each visit- therefore different Dr names on my RX's! It took a long time to straighten that mess out and al the while i had to do without my meds since I was red flagged and under suspicion.     And yes, if you are not aware of my entire situation-- I am also an addict - I did indeed get addicted to my RX's and abused them but that doesnt mean Im not a chronic pain sufferer because I am. Ive had a bad back for many years and now my shoulders and knees are going out on me too. I do without meds now because I cant control my intake. I suffer and get by with Motrin 800.
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897400_tn?1303332748
This post really touches me. I think that to begin with, educating patients about what addiction to a drug means might be helpful. I went to a pain clinic and was given increasingly higher doses of hydrocodone and told that they were addictive, but I really didn't know anything about the process of addiction/dependence. I've only learned about rebound pain since I decided to quit opiates.

Then, I think that it's important for both Dr, and patient to be willing to titer the patient down periodically to find baseline. What I've read in some of the posts on the addiction forum is that when a patient has concerns about being addicted and wants to get off the medication, the Dr. responds by cutting them off completely. This seems hysterical to me.

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Avatar_f_tn
Perhaps having volunteers who are chronic pain patients in a doctors office to pre-screen patients who are there for pain meds. A true chronic pain patient can pick out somebody with chronic pain and somebody who is using for fun. The other thing that should be in the patients bill of rights is that a doctor should be required to tell the patient when you take oxycontin or put on a fentnaly pain path on you will have to detox from these medications and here is what is involved.  I found that out only after I asked when I would be going off these medications.  Another thing chronic pain patients should NEVER need to deal with is going off a medication that has taken years to get to find out that it works only for the insurance company to say they would not pay for it any longer. Forcing the patient to try a number of other medications.  Making the chronic pain person's blood pressure drop so low she almost stopped breathing.  I think a clinic or doctors office should have a mandatory mission that when a doctor retires they will either be training the next pain management doc or hiring that next doc.  My doctors office has known me for over 10 years yet not one other doctor in the office will help me if my doctor is out.  It makes you feel like you are one of those people selling and abusing drugs when all you are is a person that lives daily with excruciating pain.  Good luck in your venture.  More is needed in this area.
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547368_tn?1332173665
You can hear all the distrust in our members because so many have been burned, accused of doctor shopping, refused narcotics after years of pain and/or pain management or accused of being drug seekers and worse.

I hear this often that when a patient goes to a PM Clinic and they see every PMP and PA in the clinic. Ask them how this builds patient doctor relationships?  It's like these clinics are only there to dispense narcotics. What happened to being a physician? What happened to the Hippocratic oath? Why did they even bother to spend years and thousands upon thousands of dollars to enter this profession if they only a judge and jury dispensing narcotics?

PMP must be the smartest and brightest that learned compassion and understanding on the knee of their mother. Their are not Gods and so many seem to have that attitude. Education must be implemented in the initial patient screening. Inform all patients of the clinic policies, what the DEA demands and what they can expect. PM patients are required to sign a contract that protects the clinic and physician but there is no bill of rights for patients or protection for the CP Patients. They are at the mercy of drug screening that runs as high as a 60% error rate. No consideration is ever given to the patient that there could have been a error in the system or that the test was just plain faulty. I understand the term Pill Nazi given the circumstances I just listed.

CP patients for the most part do not realize the scrutiny that these clinic are under from the DEA. They are unaware of the laws and take the drug screening and questions and requirements personally, mostly due for the treatment they have received either prior to their arrival or during their approval process. Very few understand that their physician licenses are in jeopardy if they do not jump through the hoops that the DEA imposes upon them. They do not realize that often the PMP must justify every prescription they write or that they have to prove that they are doing other things to treat the patients pain besides just handing out a controled substance. Is it any wonder that they feel personally attacked? Education will improve the understanding of the consumer.

There needs to be a partnership between that patient and the physician. Good physicians know how to build this and will be surprised at how ready most patients are willing to play a positive and active role in their PM. This we against them attitude begets an fruitless environment. How can such an atmosphere treat and manage patients that live with horrid, often indescribable and irretractable pain 24/7. A physician must learn how to talk to with his patients, not talk at them. Education, patient doctor interaction and collaboration along with partnering will go a long way in changing the course and attitude in this clinic.  

For some staff and possibly patients it may be too late. The burn out and mistrust has been ignored too long. I'm not sure there is any hope or fixing for the clinic attitudes that you describe. A good house cleaning may be required. Attitude always comes from the top. If those in authority are not on board you are fighting a losing battle. I don't believe that all PM patients are demanding, screaming and unrealistic. Ppl for the most part respond to how they are treated. If you want kindness, trust and understanding you must give the same. Condescending attitudes of staff will bring out the worse in your patients. Treat me like an idiot and I will act like one. Treat me like an equal, worthy human being and I will live up to your expectations.

My PMP is my PCP. I know her 3 children's names and ages. I know her father died with lung cancer and that her relationship is rocky with her mother-in-law. I have even once met her children. She shares photos as I do also. She knows the same of my family. Yet I call her Doctor and I respect her. She is not my personal friend but I know that I can count on her. And she knows that she can count on me to use the narcotic that she prescribes me responsibly. I will not betray the trust that she has given me. I would never sell or share the narcotics that she trusts me to take. If I am in trouble with acute pain I call her compassionate nurse for directives. She has even hospitalized me for pain control. I trust her with my life, indeed I would trust her with my children's life. Everyone should have this type of relationship with their physician, everyone.

In my opinion your PMP should strive for a similar type of relationship that I have with my physician. I know that Mollyrae has the same relationship with her physician. Is this a Wisconsin thing? Is it the implementation and the delegation of chronic pain patients to PM Clinics that has destroyed the very possibility that a close, trusting patient doctor relationship could ever exists?

I don't have the answers. I am just extremely grateful that I do not attend on of the PM clinics where the physicians are viewed as Pill Nazi's.

And that ends my opinions and rambling......
Tuck
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Avatar_m_tn
Thank you so much everyone,  This is exactly the help I needed. I don't know that anything will come of this but I do have some really good people who are grappling with these issues and and want to better understand the problems from all sides who will listen. And what an incredibly good idea it is, concerned,  to find volunteers (I'm not even sure it would have to be a volunteer position although I have no doubt volunteers would be available) to intercede with patients who need or ask for narcotics. A person in that position could take care of a bundle of the issues raised here.They could be that kind, understanding voice ( who better knows patience than a chronic pain patient [like the pun?]), they could educate the patient; inform them about what they are getting into, the trade-offs made when you take opiates for pain, and how to not run afoul of the complex web of rules and regulations. They would also have a better eye for the scammers, although I'm certain that's harder to do than some of you think. And give them some power to be an ombudsman, when it seems the doctor has made a mistake or an injustice seems to have occurred. This last will be the hardest, some of these doctors will have a hard time with the idea that they don't know everything already. But I am quite sure that many of them would be happy to have some help in an arena they are uncomfortable with and just don't know how to deal with.

And Tuck, you hit it on the head with the comment about the punitive narc contracts being set up to protect the provider, this is exactly why I wanted to balance that with protections for the patient, there has to be at least some sort of mediation for problems, not my wife getting a call at night from someone who is justifiably (or maybe not) hysterical because their meds were cut off that day. I do appreciate the depth of your understanding of the problems, I only wish that you could fill one of these ombudsman positions I hope we can set up.

OK trouble, for once in my life I won't be offended by the use of the term nazi. I have seen a lot of things but few rise to the Kafka-esque absurdity of the situation you encountered. I'm sorry.

Seano, It seems so unfair that there is no good way to ensure continuity of treatment when, for whatever reason, people find themselves with a new doctor. This is such a big cause of suffering and I don't know how it can be dealt with. There is always going to be a shortage of doctors willing to deal with pain at all. I think we have to put in terms of asking doctors to respect a previous doctors treatment for the sake of the patient. But I think this one might be on the wish list.

Thank you ginsa,  I think this is the heart of it. Patients and doctors have to be more aware of what they are getting into. Sometimes pain is a permanent situation as I'm sure it is for many of us who searched for this site. But more often it's not. So many people are shocked to find the situation they are in when they have taken opiates for an extended period but then no longer want or need them. Better education will help, but they must be given more consideration than, "Here's your last scrip, good luck."

Oh mollyrae, I don't blame you for not trusting me. I sure I sound like I'm full of it when I sit up at night typing because I'm hurting and can't sleep. I try not to send until I can look at it during the day, but...  But I assure you, it is more than a handful of people having problems. Would it help if I told more of my story?  For many, many years I was a very good patient. Not perfect, but very good. I never scared my doctors and it was quite clear I had painful injuries.; I learned to detox myself occasionally to try to keep my tolerance down. But it was hard.  Things beyond my control, like my wife getting a new job or a change in insurance, caused me to get jerked around every which way. And there was always the temptation to make the pain go away instead of just taking enough to make it barely tolerable, and tolerance always crept in. Maybe that means that I was always an addict and I just kept it under control enough to be able to continue to treat my pain. But earlier in this decade things were getting worse. The reconstruction surgery that miraculously enabled me to keep my foot was breaking down and I was getting very immobile and I was in a lot of pain. My doses had gotten higher than I could easily sustain. So I went in for what I considered a risky surgery to try to rebuild it again. I saw an anesthesiologist in advance and discussed my current meds. He promised he would take care of me. Well no such luck. I had a different anesthesiologist who decided for god knows what reason that I should not receive opiates during or after surgery. My wife heard me screaming long before I woke up. When I did wake up it was literally a nightmare. They injected me with ketamine, apparently just to stop me from making noise, so now I had insane hallucinations to go along with feeling every sawed and drilled bone. There's more but I'm getting uncomfortable thinking about it. The part I meant to get to was six months later when I was supposed to be feeling better and maybe going off the meds completely because I had the surgery. It was as bad as it could get. My foot was gray and cold to the touch and hurt bad all the time. I couldn't walk at all. This is when I just started buying drugs on my own. There are all kinds of opiates for sale everywhere. This wasn't a good idea. After all these years I went and lost control and became quite an addict. Well, that is not where I am now. I was trying everything and it turned out that the reflexologist had the magic touch and woke up my leg and it started healing. I still have a lot of pain but it is not as bad as it used to be and I think maybe I can handle it without drugs, at least I'm trying to. I took opiates for too long, however, to just be clean. I'm on suboxone for now and I really don't know if I will have to take something for the rest of my life or not. So I am an addict, and a long-time pain patient, and in recovery, and on opiate maintenance. I do feel like it gives me some experience to speak from. My motives here arise from seeing people suffer unnecessarily and being just arrogant enough to think I might be able to help.
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Avatar_f_tn
I was just wondering if any of the Doctors have looked into the D-Phenylalanine ?   I am really curious about the information on some websites that seem to think that this could be an alternative to useing some opiates.  I understand it is not fesiable for severe pain but could it not be tried when considering trying other things?   Do you know anything abt. this or from other Doctors ?  

Thanks for your and others' thoughts on this.

doctorsofuse.com/condition/document/21664  
or
disabled-world.com/artman/publish/dl-Phenylalanine

Ella  
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Avatar_m_tn
First are doctors getting people addicted?
YES is it to hard for them to say you will become addicted to this everytime he writes a script//////

Two do people pay $120 for a oxy-contin  Hell No I grew up in a big city in NJ and maybe a rich junkie in withdrawals might pay that but for  $20 someone could got downtown or to NYC and buy a bad a dope.. So why would they want an oxy-contin?  Thats all DEA BS

Three Have docs tell patients what the deal is..
I do to the largest spinal care hospital in the nation and they are so screwed up..
I have to call 10x to get a call back
nurses cant give a IV injection before a epidural
1st day doc tells me about they offer Bio-feedback , acupuncture, and medical massages and I ask about them and they don't do any or them.....  

Docs get nasty when I say no to back injections that have not worked for three years

I just read some of my record and they exaggerate about injections as they can say they dont work and keep the heavy sales pitch on getting them if they dont help....

This is the biggest place whats the worst like???

Put these in your rules
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547368_tn?1332173665
I hear your anger and frustration. However I respectfully disagree that physicians are "getting ppl addicted"  Yes ppl become addicted but generally not through the fault or neglect of their physician. Are their rare cases that a physician prescribes narcotics carelessly? I am sure there must be. They are human too and make errors and certainly there are just plain incompetent physicians out there. But that is not the norm.

We have to take responsibility for our self. We all can read. We all have media access and hear the numerous reports of substances abuse and neglectful physicians. Some of us are more predisposed to addiction of any substance while others are not. It is beleived that much of it is in our gene make up, a hereditary factor if you will.  

It's also true that our bodies become dependant on narcotics. There is a difference between addiction and dependence. Maybe I am naive but it my experience not only have I heard many a physician warn their patients about the dangers of narcotic usage, it's on the pharmacy hand outs. If we become addicted I just can't stretch it to blaming the physican.

Just my thoughts.
  
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356518_tn?1322267242
As I told you I think you will do great things for the chronic pain patients. It really doesn't matter how much you as long as you do contribute as every little bit helps. If we all sit back and do nothing then how can we expect change. Everyone can contribute in some way no matter how small.
I applaud you for taking the infinitive to help our cause.
I believe that there are two sides to every story here.
There are those who blame their doctors for their addictions but then we do not know the whole story so we can't really know what they went thru or if the doctor was wrong, Not on a basis that everyone who blames their doctors for their addiction is wrong as there are the cases that are an exception.
I do very much believe that one has to be their own advocate and not expect the doctor to tell you everything you need to know. In this day and age there are to many avenues to turn for answers. If you are prescibed a medication it is up to you to talk to your pharmacist and to do the research on the drug. The doctors can not be expected to do
everything. They have alot of responsibility and their role in prescribing a medication is limited when it comes to explaining the drug itself. This is what your pharmacist is for.
With the Internet and all the other possibilities it is inexcusable in my opinion to blame the doctor for not being more of an informant on a certain drug.. As your own advocate you have the responsibility to
do the research of what your putting in your own body.
I think the doctors and patients each have a set of responsibilities and each should take care of those that are assigned to them.
Doctors have intense rules to follow and we as Pt's have to understand this. In turn the doctors should be aware of what we face each day being in pain and having to learn to deal with it. I have a friend who is a PM doctor that  got into pain management because he broke his neck and so he found out first hand what it was like to endure the constant pain and have no compassionate doctors willing to understand. He is a great PM doctor because he has been there and knows what we face.
Perhaps having doctors get more education would benefit the doctor as well as the Pt.
Having a great relationship with your doctor is great but it is not always possible as some do not see the same doctor each month. This leaves the doctor with feelings of mistrust as he does not really know his/her Pt well. It is not always possible to see the same doctor every month so that leaves building trust with each doctor you see which is hard to do.
The contracts cover the doctor very well but does not really cover the Pt and issues they may have, a contract with the doctor that also covers the Pt is well in order.
This bill of rights your working on is great though I have seen some before. It will take the doctor and Pt's to abide by them and this is where the problem comes in.
If the doctor or Pt has issues that are not really covered in the bill of rights then it leaves both the Pt and doctor in unsecured areas and may lead to the Pt being dismissed.
Take for instance a Pt has a drug test and they are  legit and take their meds as prescribes but the test says otherwise. The normal thing that happens is the Pt is fired and they then have this in their record and then have virtually no where to turn for help.
There needs to be something in place that will protect the innocent who are taking their meds and still catch the ones who are diverting.
The laws need to protect the doctor as well as the Pt. The way things are now we have virtually no rights and if we are blacklisted for one test that was wrong we are then out of luck.
What can we do to ensure that the legitimate Pt''s get the help they need and also catch the ones who are diverting. I believe this is the main goal between doctors and Pt's alike.
We as chronic pain Pt's do not want people who are selling the medications we need any more than the doctors want these drugs on the street. We both pay the price for the individuals who do divert their prescriptions and should try and work together to make it hard for them to do so while helping our cause too. If we can weed out the diverted then we as chronic pain Pt's have more credibility and therefore more compassion and understanding.
I have alot of suggestions I have just been limited on time the past couple weeks.
I hope the comments your getting will help you in helping our cause.
Thank you for taking the time to do this:)
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356518_tn?1322267242
I am in Florida and know for a fact that oxycontin sales for a dollar a mg. therefore a 20mg pill will cost twenty dollars and so forth.
I have spoke with the Sheriff's dept on more than one occasion regarding this. I have witnessed Pt's selling their prescriptions outside the doctors office as well as the pharmacy and it makes me livid. There are so very many people who can't get the help they need because of this kind of behavior. I call the authorities and inform them anytime I see this. If I just sit back and let it happen then I am no better than the ones who are diverting their prescriptions for money.
Just in Florida alone the stats are staggering and this is only based on the ones that are caught!
We all have to be aware and do what we can to stop this.
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547368_tn?1332173665
You're right Sandee none of us know the other side of the story. There are certainly incompetent physicians out there as I mentioned that may prescribe carelessly. But as you said we all need to be our own advocate. Addiction can happen to the best of us, with out without the "help" of a physician. Addiction is also a disease just as is chronic pain.

No one makes an alcoholic drink yet there are alcoholics, again a disease and certainly no ones fault. In my opinion blaming the physician is like blaming the bartender for serving the alcohol? I never ordered a drink and had a bartender warn me that drinking ti could cause an addiction to alcohol. But than I don't claim that my opinion is correct. It's just my opinion. And off the subject.

It is a sad fact that ppl divert their narcotics. And as stated it is one of the largest factors that physicians are suspicious of their patients. Indeed there are chronic pain patients that divert their narcotics for money to pay the fuel bill. There are others that have no good reason. The statistics are staggering every where.

If nothing else kolo you have certainly opened up a lot of dialog.
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Wow, thank you. I think this is a very good conversation. And Tuckamore, I want to especially apologize to you if I provoked some of this conversation rather than elicited it. I mean, I have seen the incredible patience and compassion you have for every person that visits this site and so when you responded to me with just a bit of barely concealed annoyance, I knew that I must have sounded like a jerk. So thank you for being patient with me as well. And Sandee, thank you so much for the encouragement. I think we have something going here that has the potential to help some people. At this point we are talking about putting together a program of volunteer patient advocates who have experience as chronic pain patients working under the auspices of the existing behavioral health professionals. These counselors and doctors are there for a patient looking for help ( or is referred for help) after the fact of problems becoming manifest. I am quite excited that they are interested in heading off problems in advance through better education and dialogue between doctors and patients. And it has been mentioned that there is funding out there for a program like this if we can first prove that it is of value. So I have a lot of work to do. I need to put some of the excellent input I've gotten here into a coherent form and make a well thought out proposal to the people who are interested and capable of enacting it. I need to research whether a model like this has been used elsewhere and how well it might have worked. I need to find out if anything like a bill of rights specific to the chronic pain patient is out there that I can refer to. So again I am asking for help. If anyone can point me in the right direction for any of these things I would be grateful. It is also going to be very important to determine the possibility of finding a few good people willing to volunteer maybe as much as a couple of days per week to this effort. I'm pretty sure I could make this work if I could fly you guys out here to help me. There are patients rights groups in existence but from what I've seen so far I not sure that even they are comfortable with chronic pain and it's treatment. But thank you again, I feel privileged to be able to have this conversation with thoughtful people.
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I have been guarded because I have seen these types of posts before with the person looking for information that isn't on the up & up. I'm glad that you are standing up for the CP sufferers...me being one of them.

I have a pain contract but in my case, it's just a piece of paper in my file. I have never underwent a drug screen or even been questioned. My PCP is also my PMP. Our relationship has been a close one.

Most of the ppl that I have chatted with have some type of pain managemnet...maybe not the best but it's something.

I have heard many many stories about patients having bad drug screens and I guess that baffles me the most. Are the tests wrong or are there many pain patients not abiding by the rules. Only they know the truth.

I have a support group designed for CP sufferers here at MedHelp. You may find additional information there that may help you. We have 105 members making it the largest group on medHelp. Visit if you can. If you go to my profile page, you can find it there. I am not allowed to advertise in the forum so I cannot tell you the name.

I still wish I knew the organization you are working with...send me a PM if you can. I have further ideas available to you.

Warmest regards,
Molly
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I am completely in agreement about the pain support organizations that are available. there are several national ones but I like you question their lack of looking for a better answer for chronic pain patients and their doctors. We have a great opportunity here to make a difference and have it amount to change for us as well as the doctors.
I will do anything I can to help.
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Thank you Mollyrae,  You are talking about the other forum you founded, right? I have started reading through that and it looks like it will be very helpful. I am going to have to become better educated on a number of issues if I am going to work with these professionals to set up a system whereby patient advocates might be able to help to protect chronic pain patients, at least in this one organization. I don't want to get in a situation where we are just adding another burden to the patient without instituting reforms to protect them and not just protect the doctor and the clinic.  I am a little bit afraid to name the organization my wife works for here on this public forum. I don't know what kind of haters might be out there, especially when you tell me that you have seen posts like mine from people with malicious intent. I'm having a hard time imagining what that might even be. But just to be clear, if I send you a note anyone can read it, but if I click on "send a message" on your profile page will that be private?  I am a bit baffled by your comment here about drug screening tests. Don't you have a couple of journal entries that go into great detail about the failure rates for these tests and many of the reasons for those inaccurate screens? What am I missing here?
Thanks again for your encouragement Sandee, I have just this one small to medium size community health care system that is interested in the ideas we are developing here but everyone I talked to was a little bit excited about the idea that if we put together something that seemed to get results and could be replicated there would be a lot of interest, and possibly even funding, in other places. ( it looks to me that my best bet is to make sure that if things don't work, that I, or the organization that we put together to locate and train volunteers, can take the blame, but that if it does seem to be working out the professionals we would be working under could take the credit).  I have someone right now trying to get me numbers to estimate the demand for such a service in this one system. How many patients, out of 100,000 annually, are taking medication to treat pain, temporarily or semi-permanently? My next step is to thoroughly research whether anything like this exists already; how it is administered; and whether there are any measurements of its' effectiveness. Thanks again for your help and encouragement.
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Hi Kolo:

First...yes, I do have information posted in my journals for others to view concerning drug screens. I put it there because of the amount of members with "bad" screens. Like I said..The fact that there are so many tests going bad and the preciseness of these tests baffles me.

To the next question, yes, if you send me a private message it remains that way..private. I was talking about the group I founded. You may find additional information that might be helpful.

The posts with bad intent was not necessarily malicious but have been for either personal injury gain or advertising purposes  and these are few and far between. I have recently deleted one that was meant for advertising so this is why I am causious...and you never know who you are talking to.

So, please feel free to send me a PM...they are confident and will go no further than me.

Thanks,
Molly
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Let me say I do not blame anyone for addiction other than the Poppy...
Whats my choice be in pain or less pain??? No choice there for me, I know the pills help..  Doctors choice write script make money help ppl vs dont help dont make money..

Its butt heads that think someone will pay $120 for a oxy-contin and want to make pain meds $120 each from drug stores..

We go from one decade they sell them like candy and now you can hardly get them unless they make a ton of money other services....... If they make more money of ppl how suffer in pain just to CYA with the FDA they should die penny less and in the gutter
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  Hello Kolo13, deeply interested and should share story with all, abbreviating as much as is tolerable.
  Very sick individual I am and have been. Pain meds of Patches and methadone. Family doc of 30 yers treated this once well musceled hay farmer, dairyman and factory worker.
  Doc's practice ended and sent to 'Clinic', the new kind of clinic, where DEA, (clearly a fully out of control, to well federally protected, over taxpayer supported agency, an agency funded in large part through confisication of citizen assetts, regardless of trial) managed federal legislation which changed doctors into DEA agents.
  The real issue, after lawsuits against doctors and clinics employing "contracts", (none of which are worth the paper they are wastefully written on) will be how doctor's insurers will react when the first jury rewards are passed down for patients.
The legal community is highly tuned, purpousely waiting ( as they should) untill millions of patients are irreversably damaged by such 'contracts', so that there will be work for many lawyers, for years to come. And this will happen.
One such case has begun in WA State, where patients are filing huge, massive damage suits against those most deserving to be sued. The typical "12, 15, and up to 30 member doctor boards" you hear about nationwide. It's important to remember, these doctor boards are staffed by doctors who do not work any longer. It's much eaisier to sit a board for ridiculous sums and salaries, than to go to work at your practice.
Likewise, there are countless suits being prepared for filing next year, where doctors employing 'contracts' in their clinics (usually tax payer supported clinics) will be gleefully sued for "Contractualy Coersion", also known as contract fraud. These doctors will be paying sums ordered by juries never before imagined.
Just briefly, very briefly, here's why.
A patient has lost a doctor who previously delivered pain medications of strong content to him/her. Mentioned suits will only be filed in cases where medication could cause withdrawl (withdrawal) that could be reasonably expected to threaten life if stopped suddenly. Clearly, the patient is challenged to quickly find another provider unless the prior doctor made arrangements.
  Death, or very, very, very serious suffering could commence without at least a taper down effort for the patient. True, the patient would suffer terrible pain, long after withdraw, but would still live. However, in this instance, (patient is tapered) to be legally actionable, his suffering began before he dealt with a doctor, little claim could be made.
In the truely beautiful response of the Constitution of this particular nation, certain aspects of that Constitution cannot be ignored, but often are, yes, even by a Congress and President sworn to uphold it. It happens all the time, Congress passes unconstitutional laws and the highest and most Supreme Court, tells that particular group of ego filled non constitutional trained lawmakers, you were much the stupid group that year, your law is now thrown out as meaningless.
Certain federal policing agencies tell certain gullible groups and associations of doctors, here's how your going to do it under our new law. (Note agencies call it "their law", since it benefits their agency in every financial manner possible, jobs ,position and on and on)
  But,,, there's a smart lawyer who sees ahead of all others, as all income producing lawsuits in fact begin.
  This one is glaring and simple but has no need to change federal laws at all. It's the "Contract", used in every Clinic nationwide and the State Boards of doctors who are liable, down to their sportcoats and should be, because they seek to side with a political party telling them they have great power. They don't.
Contract law is miles thick and fills libraries, we all know that.
  First universal, nationwide legal agreement about them?
  There MUST BE MEETING OF MINDS, to enter into any contract, which can be verbal, written but is binding if there was a "MEETING OF MINDS".
  First major mistake of medical community? Calling it a 'contract' in the first instance. They will suffer massive financial loss and should ofcourse.
Second universal understanding of contract law?
No contract is ever, I mean EVER, considered a contract, if it was agreed to under coercion. Meaning one party (the doctor) using power, force and intimidation to get compliance. In other words, much like bribery and plently of doctors who decided not to defend their professions and become DEA agents, know what they have done.
They have before them a sick and in pain, suffering person, not yet a patient. They KNOW the person must have certain medicines or that person will suffer greatly, perhaps die. In most cases, that person expects to die without the medication and that to now get it elsewhere is impossible, since any reasonable effort on the person's part will leave a gap of time to great to leap. There is no time.
Who stands between that person's immense suffering is a Clinic doctor with a piece of paper that says, "Contract".
Does the 'Doctor' know the challenge that person, who wants to be a patient faces? Yes.
Does Doc recognize onset of withdraw? Yes.
Doc see fear on person? Yes
Does Doc see that it's clearly too late for this person? Yes.
Does Doc have nice prepared 'Contract' for person to sign and agree to his terms to be 'saved'. Yes.
Does Doc have advantage in this new contract? Yes.
Doc in position of power? Yes.
Doc want compliance with his and any other's form of compliance, even a Government's desire for compliance (Smell the Constitution rotting right there a bit? Don't worry it won't.). Yes.

Doc using intimidation? Most certainly yes, he's saying sign this agreement, and I will save you from potential ER visit , or death, or pain.
And worst of all for Doc's financial health and his insurer's health, it comes across loud and clear as little 20 year old Amy sits in front of the small town jury where big Clinic doctor is forced to go and Amy is crying and she says to the jury,
          "The doctor said if I didn't sign it he wouldn't treat me!" and the tears flow ( they should) and the jury is bitterly angry ( they should be) and the verdict is,,,,,
        
         CONTRACT FRAUD VIA COERCION ( and it is)

       and the $$$$$$ just flows to law firms and thier patient/clients nationwide as the collective of our nation's laws transfers tens and hundreds of millions from insurance company executives ( previously worried about lawsuits from those overdose cases when they bribed congress to write the new unconstitional laws that just fell on their faces and the DEA's)
(footnote, the DEA will no doubt be reduced in size, once the magnificence of the error is discovered by congress, being bribed by many other industries)
  So, people here can begin a Federal legislative or State solution or send a few bucks to firms already underway in this, quick PC search will get you there, or just spread the word at law blogs. Frankly it's a no brainer, only some stupid lawyer from a doctor's insurer would even argue the facts a minute, till the Judge, even pre bribed, would be faced with undisputed, Black's law as well as entrenched American law re: contracts.
Those pain contracts are nothing, they have no legal standing and those who were forced to sign them are victims of fraud, period. Here's a high five to Class Actions!
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Kolo,

You didn't sound like a jerk!!! I like Mollyrae was trying to figure out where you were coming from. Sorry if I was ever less than kind.

You have my support. In my state we do not have the typical PMP or PM Clinics with contracts that are found in other states. I don't know if I can locate any information in prototypes for you but I will search.
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Kolo:

I did not think you sounded like a jerk either....As Tuck stated, we do not have actually do have Pain Management Clinics (very few) and usually our Primary Doctors are our Pain Management. I have a Primary that also does all the prescribing. This is the reason why we have such a great relationship. My Doctor see's me for everything.

Like I said, I did sign a Pain Contract but it's just a legality that need to be in my records. My Doctor has 100% trust in me and has NEVER asked me for a urine sample or even hinted at it. I am very truthful with him...even if I run short that particular month...I tell him. He seems to understand but also reminds me that I must try and stay on track with the prescription which in most cases I do.

I feel very lucky that I live in Wisconsin. The State is very family oriented and runs at a slower pace than most states. Our speed limit is generally still  55 MPH which in comparison is much slower than the rest of the country.

I go to the clinic and usually every Doctor or nurse working that day knows me and it's "Hi, how are you" all the way down the hall.

The University Hospital & Clinics is about the only Pain Clinic that I know of within a couple hundred miles of the capitol city.

I hope this gives you insight on why I question things.....It's not you...it's just being cautious.
Thanks,
Molly
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Hi I was diagnosed with RSD in 06 but this started in2000 went thru years of its in your head you are chasing drugs every line. It didnt matter that I would have my Lt hand,arm neck Lt side of face all swollen, But what really got me was when my husband rushed me to the hospital because I had been curled up in pain no sleep for days when got to hospital BP was 296 over 190  they thought it might be cancer but didnt want to do anything to mask the symptoms  I got fed up wanted to go home but didnt make it when I tried to leave I passed out on the ER floor from the pain still no treatment Now I find out if they had somehow any way treated me in the beginning  it woulllld not have stopped it but would have slowed down the spread. Now the RSD is in both legs , back LT arm, starting to go into Rt arm in neck and face which makes the needles they stick in the front of my throat to get to my spine hard to do and risky. But I still get the "WE dont want to give you pain meds because in a year your family is going to sue us because you are addicted" give me a break, Not treating me has stolen my life, my children are always worried about me and I hate that they shouldnt have to and ALL I see is doctors more worried about their insurance than the patient. I am willing to sign a release just to get treatment, and before anyone says about other treatment I have even been checked for tens inplant, But they cant I have large aracnoid cyst on spine  and they  say degenative dics sooooo have asked about patches if you have other ideas I will ask about them too  it is either depression meds  that dont work or needles that have had 12 in 6 months did nothing or made it worse, but last appointment more needles or nothing. SO when IS patient care and quality of life considered!!!!
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I really don't care about your qualifications as I would say the same things to anyone asking about improving chronic pain treatments and access to aggressive pain medications.

1) A narcotics contract should never be required unless there is evidence that the patient has abused or diverted the medications. Evidence isn't a a urine test, but a pattern of refills LONG before the medication should run out (the attempt to PICK UP the medication occurs before the patient's supply falls to 4 days).

2) Doctors should not be allowed to send patients to physical therapy BEFORE getting MRI's or Xrays on file.

3) Pain patients should see the same doctor on each visit. Clinics should not keep changing you doctor at each visit.

4) Doctors should be prohibited from having patients repeat previous treatments. Once you have tried physical therapy for your chronic pain, you shouldn't be required to try it again.

5) Follow up visits should be limited to once every 4 months, if not longer. Unless the nature of your pain changes or you need a higher dose of a current medication, there's no reason to spend what little money you have on unproductive office visits

6) New doctors should be prohibited from changing a current medication or treatment plan if the chronic pain has been present for at least 2 years.

7) Once addiction possibilities have been discussed, they are not addressed again unless a new medication is introduced.

8) Doctors may not drop patients or deny them medications as a consequence of LEGITIMATE medical marijuana use.

9) Standard of care practices should place the patient's quality of life issues BEFORE the doctor's needs.

Hope that helps!
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Nice post SageRave
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I want insurance companies to pay for alternative medicine. No drugs, no addictions or side effects. If someone was in pain, and if insurance would pay for acupuncture, reflexologists, foot zoners, iridologists, energy tapping, muscle testing, etc then there would be a safer, side-affect free way to treat the real root problem and not just coat the reason with a band-aide!!!!
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OMG you hit just so the way it is. Also hospitals play a  position with drs.as such as fining when the dr. has gone over a limit of pts. and the amount the pt. takes that is reported to the dea as the hospital, pharmacy, and pt. has to be reported to the dea.
I personally find the dea has the say on my healthcare not me and not my dr..
Just so you know I am a long term did all the other evan though I ended up in the hospital 2x doing the hoops they required. I have DDD, OA, RA, Lupus, Sjgroens, compressed disks with nerve damage it's hard not to be angry not just for me but for the drs. that are scared angry themselves. There has been bad on all sides, dea drs. and pts. I  certainly wouldn't mind a balancing legal option.
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SageRave,
All 9 of your points were absolutely GREAT.

I have been in pain for several years now due to problems in my cervical spine.  I've had all the evaluation tests, multiple times -- consulted with multiple surgeons//jumped through all the hoops.

I truly feel that all we're talking about here is attempting to "fix" the "symptoms" of the real problem.  We are the patients; we have documented need of medical help.  The root of the problem is the fact that the honest people are always punished for the evil/wrong doing of others.  I am an American, born and raised here.  How many of OUR tax dollars have been spent in the R&D of these drugs??  The fact that we have documented need should put us, the patient, in the drivers seat and the doctors should be the people we consult in order to make the best decisions possible.  My pain doctor says the meds actually belong to him, even after I've paid for them (I often wonder if he actually believes this?).  I bet he'd feel differently if he were in terrible pain 24/7/365.

  
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call me fred,i'd had an very bad injuryer in2004 broke my neck,left arm messed allup damage nevres,half the sizes of right arm,dislocated dic in lower back,in very bad chronic pain 24/7 i had an plate put in my neck,c-3,c-4,c-5,they said c-4 had pushed against my nevre from my neck to my left arm and the plate would make it better,the doctor i go to now says after 6yrs of this damage it just not going to magicly be new after an operation i will just have to live in pain or have an hloe arm transplant,i have to take pain meds,if i don't have them ican't sleep,eat barely move if that or lay in bed 24/7 i also can't **** or have an vowl movement without painmeds i have 5 doctors who say there not anything more they can do,and these are good caring doctors,i've try evrything and i mean everything without my pain meds i'm just as good as dead  i'm a true pain patient,will take a **** test,blood test,lie detector test any time, any where.
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call me fred,i'd had an very bad injuryer in2004 broke my neck,left arm messed allup damage nevres,half the sizes of right arm,dislocated dic in lower back,in very bad chronic pain 24/7 i had an plate put in my neck,c-3,c-4,c-5,they said c-4 had pushed against my nevre from my neck to my left arm and the plate would make it better,the doctor i go to now says after 6yrs of this damage it just not going to magicly be new after an operation i will just have to live in pain or have an hloe arm transplant,i have to take pain meds,if i don't have them ican't sleep,eat barely move if that or lay in bed 24/7 i also can't **** or have an vowl movement without painmeds i have 5 doctors who say there not anything more they can do,and these are good caring doctors,i've try evrything and i mean everything without my pain meds i'm just as good as dead  i'm a true pain patient,will take a **** test,blood test,lie detector test any time, any where.
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It is ridiculous that we must go through this crap every time about the dosage when I have suffered for months before I dared ask for an increase.  Now I am being called depressed and they want to replace my Vicodin with amitriptyline and gabapentin, which are social anxiety and depression meds.  I was addicted to these damn psychotropics once before and I believe that my heart failure was a direct result of Paxil.  I am afraid that things are not going to get better, but I am praying.

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