The Crazy World of Chronic Pain Patients

So, I am a chronic pain patient. Thanks to an automobile accident in May of 2002, I now have a broken artificial disc in my spine that is prevented from severing my aorta by a spinal fusion. The rest of my spine is crumbling now as a result of the stress and the previous surgeries. Obviously, this is a painful and constantly deteriorating condition, and one that I deal with on a daily basis. As a result, I am a patient at a pain clinic here in Ohio. 

I absolutely love my pain management doctor. He is sympathetic and very good at what he does. But thanks to the growing restrictive laws regarding the treatment of chronic pain patients, his ability to help me is being hampered by the government we both pay taxes to. Right now, I'm going through something that many chronic pain patients have to endure, and I want to talk about it freely and honestly. Because for those of us in REAL pain, the laws have started to impede our ability to get the help we need. 

To start off with, the list of medications I have been on just to keep my pain at a tolerable level is fairly extensive. I have been on methadone, which is a slow-release pain relieving narcotic for over 8 years. Add to that dilaudid, oxycodone, neurontin, meloxicam, amitriptyline, mirtazapine--and you get an idea of what I'm talking about. Now you guys need to understand something here--all of these medications can only get my pain level down to a 6 out of 10 on a very good day. There are many days when I cannot sit up, or walk across the house. And in order to get those medications, I had to sign a pain contract with my doctor--a contract that outlines what will happen if my pill count is off or my blood/urine random drug screens are off. 

What happens is that I get discharged from the practice. 

So, flash back to December. I had been discussing with my doctor my desire to get off the methadone entirely. Methadone is insidious. You don't FEEL drugged when you're on it--which, as a writer, I liked. Methadone was the first slow-release medication that had actually helped me. BUT, last spring I accidentally knocked my last week of meds into the toilet, and then I found out exactly how addictive that medication is. Methadone withdrawal is NOT fun. It's agonizing. So at my next visit, I told my doctor I wanted to wean off of it. 

He wanted to do a pair of final procedures first to see if they helped. They didn't. And so, at my December appointment, he agreed to wean me off it. 

Enter the complication. 

Before that visit, I'd been deathly ill with a sinus infection that kept me from keeping anything down. In order to make sure that I kept down the methadone, I stopped taking my other medications. You know--having gone through a week of withdrawal just six months before, I didn't want to go through that again. At my doctor's appointment, I told the nurse I'd been sick--but neglected to tell my doctor. And a few weeks later, a couple of days before I needed to call for refills on my support meds, I got a letter from my doctor informing me that my urine screen was off and therefore they would not prescribe me any controlled substances anymore. 

This was pretty devastating. I was weaning off the methadone, but it wasn't going well. And now, I couldn't get any of my support meds? 

Oh God. 

You see--when a doctor cuts off  a patient or tells them he's going to take them off their pain meds, a lot of the patients go absolutely nuts. My doctor has a form everyone has to sign now, stating they aren't going to assault the staff! No lie--just this week a big burly guy went after one of the nurses and then my doctor he was so enraged. Stupid. 

Because of this, I knew better than to call up and yell at the staff. It would have accomplished nothing. So I discussed it with my husband and decided to just tough it out until my next appointment. And then I spent the worst couple of months in my life. January and February are pretty much a blur. I stopped eating, stopped sleeping, stopped pretty much everything. I spent hours just thrashing around on the bed or the couch, desperately trying to condition my body to get accustomed to the lower dosage of methadone. I made it halfway--cut my intake to half of what it had been, but couldn't get any further. I could not make the jump to 1/3 of a dose. 

I ended up in the hospital last week, severely dehydrated and having lost over 50 pounds since my last doctor's visit--and got a pain shot that let me sleep for a whole four hours before the withdrawal started again. But, I persevered. The ER doctor called my doctor, and they prescribed me medication to help with the withdrawal symptoms. And so, when I went to my appointment this week, my doctor and I were able to have a good, constructive conversation about my treatment--and when he discovered that I'd been sick and that was the reason my screens were off, he relented and readmitted me to his practice.

He also told me I was one of the few he would do that for. Why? Because in the last four years, my screens have never been off. Neither have my pill counts. I have always followed my contract to the letter and he knows that. But I think, also, he was impressed. I had literally none of my support meds--medications for sciatica,  neurological pain, arthritis--the daily medications that help people like me without being narcotics. I was going through severe withdrawal. And I made it all the way to the last week before my appointment before he got a call. I never called his office and cussed out some poor girl who answered the phone. And at my appointment, I was my usual self--and we talked as we always do: with mutual respect and honesty. 

He explained to me that both the state medical board and the DEA were analyzing his records. Just a couple of weeks before, the DEA had been in his office regarding one of his patients. After I left his office, I started to think about that. 

THE DEA AND THE STATE/FEDERAL GOVERNMENT ARE MONITORING OUR MEDICAL RECORDS FOR THE PURPOSE OF HARASSING PAIN MANAGEMENT DOCTORS. 

What the hell is the DEA doing looking at my medical records? That's outrageous! Our medical records are supposed to be PRIVATE, right? According to the HIPAA no one can access my records without my permission. But, once I started digging, I discovered some pretty horrific exceptions. For example, take a look at this: http://www.thehealthlawfirm.com/areas-of-practice/pain-management-and-dea-defense.html

Pharmaceutical manufacturers and distributers keep track o f the narcotics they sell and to whom they are sold. This is particularly true of narcotics and other medications that are routinely over-prescribed and abused, such as oxycodone, hydrocodone, Roxycodone, Percocet, Xanax, and other such medications. They will usually report a pharmacy or physician that orders a larger amount of any of these drugs that usual. Drug chains and manufacturers also track the numbers of various drugs that are prescribed by various physicians. They will usually report a pharmacy, clinic or physician that orders a larger amount of any of these drugs than is usual for their customers.

If an "inspection" or search and seizure is performed on a physician's office, a pain management clinic or a pharmacy, it will usually be after an investigation has already been conducted by both state licensing authorities and the U.S. Drug Enforcement Administration (DEA). An investigation will usually be opened based on one or more complaints that have been received from patients, next of kin of patients, pharmaceutical manufacturers and distributors (who report large quantities sold), competitors, local surrounding businesses, or local law enforcement authorities.

Physicians, pharmacists and staff members may be arrested during such a visit. There will usually be emergency suspension orders (ESOs) that will be served by the DEA to suspend DEA registrations and numbers of pharmacists, physicians and clinics. Emergency cease and desist orders (CDs or CDOs) may be served by state licensing bodies (such as the Department of Health or the Attorney General's Office). Orders to show cause (OCs) why a DEA registration should not be revoked may be served. An emergency suspension order (ESO) to suspend a state license may be served if the investigations or proceedings have already progressed to that point; however, usually this will come later. Arrest warrants may be executed and people arrested. This will almost always have been planned and decided ahead of time.

Uhhh...so that's the back door the DEA uses to get to patient pain records. Based off the report of a disgruntled patient or a manufacturer who tracks where each batch of pain meds are sold, the DEA and state licensing authorities can launch an investigation and get into the patient records either through the pharmacy OR the physician's records. From the same site:

In almost every one of these cases, either the DEA, the Department of Health or the local law enforcement authority used undercover agents posing as patients to make appointments with the physician, agents usually wore a wire device, and gave the physician false information.

Yeah. In other words, entrapment.

See here's the thing. I am very well aware that there are both patients and doctors out there who are trying to skirt the law. Portsmouth Ohio, not so far from here, is an infamous location for "pill mills" and that's very well known. But the majority of chronic pain patients are like me: their bodies devastated by injury or genetics, in constant, unrelenting pain, who require the strict regimen of a good doctor to just function on some level every day. And we are the ones who are suffering from the illegal activities of the few.

My pain management doctor is a wonderful guy. I trust him to do the best he can for my care. And because I wanted to get off the most dangerous medication in my regimen, he trusts that I'm not a 'doctor shopper' or addict looking for a fix. That's why our relationship works. But with the DEA and the state breathing down his neck all the time, his hands are slowly becoming tied in how he treats his patients. Think about it: he makes one mistake, one misjudged character, one manic depressive who tried to commit suicide, and not only he but his ENTIRE STAFF gets arrested and charged as criminals. CRIMINALS.

Maybe our country would be better served if the DEA went after the REAL problem here. I am not the problem. My doctor is not the problem. The real problem is the DEA's inability to have any effect upon the REAL drug trade, and so they are focusing on the minutiae of chronic pain management. Because when a GOOD pain doctor is arrested, then HUNDREDS of chronic pain patients like myself are doomed to the agony of suffering without relief for their pain until they can find a new doctor who is willing to take them on.

I've been through that. My last pain management doctor was arrested because he was over-prescribing...to himself. I got the phone call three days before my appointment that he had lost his license, and they gave me no help in finding a new one. Thankfully my family doctor took over until I was able to get in with the doctor I have now. It's a very agonizing kind of panic, when you're looking into the bottle you need to survive and knowing you have three days to find someone willing to help you out. It's the kind of thing that makes a wholly normal person act like a drug addict--not for the fix, but in terror of what will happen to their body once that last dose is processed. And for those of us on methadone? That cold turkey withdrawal lands us in the hospital.

So there's the story of my last couple of months. It's not a pleasant story, but there are lessons to be learned through it.

And damn...my butt looks good. Wouldn't recommend the weight loss program to anyone, though.

 

The Culture of Pain

Chronic pain is an issue I feel pretty passionate about. Aside from a debilitating back injury I received in a 2002 car accident, my body is now wracked with arthritis in all my major joints. I've already had one total knee replacement and am due for another. So yes--I deal with pain every single day, and I do my best with the cards I've been dealt. No matter how bad my pain gets (and some days it's very bad), I try to keep in mind that there are a whole heck of a lot of other people out there whose daily battle with pain is far, far worse than mine. So no--I'm not lying on my couch, eating bonbons and watching soap operas and whining about poor little me with enough metal in my back and knee that I have to carry a special ID listing all my titanium if I have to go through any kind of security checkpoint. I have fairly ambitious physical plans for this spring and summer that will hopefully result in me being able to walk at least 2-3 blocks, which is something I've not been able to do for a couple of years now. 

Today was my bimonthly appointment with my pain management physician. If you're not a chronic pain patient, you may not know that we have to sign a 'pain contract' with the doctor who prescribes our pain medication. The contract is usually pretty standard--can't get pain meds prescribed by another doctor, random urine testing and pill counts, can't get refills for 'lost' or legitimately lost medication, etc etc--all of which I've signed without blinking. Makes sense to me on all levels, especially with malpractice issues, the potential of accidental or intentional overdoses of narcotic medication, and the plethora of pill mills like this one in east Tennessee that was busted recently and included a former police chief on the arrest list. 

But understanding a physician's need to not only protect himself legally and to effectively monitor pain management programs for his patients doesn't make the life of a chronic pain patient any easier. For example, unless a bone is protruding from my skin, I'm not going to go to the emergency room if I hurt my back worse than it already is. Especially not the *insert name here* Medical Center in this town. Why? Because even though all my medical records are available instantly via the computer network that links all medical facilities in the area, if I go to the ER complaining of pain, I am treated like I am a drug addict looking for her next fix. Seriously. It's a humiliating exercise in futility, so why even bother? A friend of ours who is also a pain patient went to the ER with a serious illness, and they assumed he had overdosed on his pain meds and pumped his stomach! And God forbid your slow-release pain medication is something like methadone, as both our friend and myself are. Pain patients take minuscule doses of methadone--as in as little as 2.5 mg per dose up to 8 or 10, whereas addicts using methadone for withdrawal will take four to sixteen times as much. And yet, chronic pain patients are treated as if they are just like those recovering addicts, sometimes before they are even evaluated for new injury or illness. 

The reason I'm with the pain management doctor I'm with right now, despite the fact that his office is an hour away, is because at my first appointment with him three years ago he sat down with my husband and I and said--and this is a word for word direct quote--"You are not an addict and should not be treated that way. You have a serious pain issue, and as your pain medication physician I must respect that as I try to find a way to alleviate it." 

Hard not to like a doctor who talks to you like that. No condescension, none of the holier-than-thou aren't-you-exaggerating tone. Even harder to find a pain management physician who thinks that way. Although he's an immensely busy young doctor with a full practice, he still takes the time to sit down with me every single appointment and find out what's been going on since the last time I was there.  So singing his pain contract was no big deal for me--it was standard, and he knows I'm not the kind of patient to violate it. 

So back to today. 

Today, there was an addendum to the contract that absolutely blew my mind. The addendum is a warning that if a patient is loud, aggressive, threatening, or abusive to anyone on the practice's staff, they will be 'fired' as a patient. 

Wait a second. 

What? 

Seriously?

The situation I related above is 100% accurate--not just in Ohio, but in a lot of states--and understandably so. Even though it's a pain in the wazoo if you do something stupid like I did once and accidentally knock five days' worth of pain meds into the toilet, a pain contract spells out the requirements for a mutually respectful and positive relationship between the doctor and the patient. And as chronic pain patients, we NEED that respectful and positive relationship with our pain management doctors, nurses, and staff. 

So exactly how stupid do you have to be to jeopardize all that by yelling at the staff, bullying the physician's assistants, or cussing out the young lady who answers the phone and makes appointments? Apparently pretty darn stupid, and evidently there are a lot of those stupid people who seem to think they are entitled to their physician's time and attention. When I knocked my pills into the toilet, consigning myself to multiple days with no medication on hand, I didn't call my doctor's office and scream at his assistant, or bully his nurse, or demand that he drop what he was doing and write me a prescription to replace what I lost. It wasn't his fault that I'm a clumsy idiot. Nor was it his problem to solve. Instead of demanding replacement drugs, I called his office and asked to speak to a nurse, calmly informed her of what had happened (due to those random pill counts that contractually they are entitled to ask for), and calmly asked her for advice on how to deal with those medication-free days--what might help, what to avoid, what OTC medication would prove effective. 

Yes, a lot of chronic pain patients resent the culture that's grown up around our medical care. Yes, we have to jump through a lot of hoops in order to get the treatment we need just to get through the day--and no pain medication or regimen eliminates chronic pain, believe me. But we also have to remember why things are the way they are--the "patients" who were pill shopping, seeing multiple doctors and getting multiple prescriptions for narcotics, selling the pills for profit, going to pill mills, lying about the severity of their pain and going to the ER for a pain shot on a weekly basis, "losing" their prescriptions and asking for replacements. THOSE people are the reason I can't go to the ER when my back is so seized up that I cannot sit or stand for assistance. THOSE people are the reason why I have to sign a contract with a physician I trust and who has no reason to distrust me. 

And one thing I know for damn sure--I'm not going to be such an idiot, such an ungrateful asshat, that I'm going to abuse the people who are doing everything they can to HELP me. When I was tending bar, I occasionally had to let people know that they were not entitled to be served alcohol at my bar. Drinking was a privilege, and not a right. As patients with an ongoing medical problem, we are entitled to health care and we get that from our pain management doctors. However, we are NOT entitled to anything above and beyond what that doctor has already prescribed for us. We are NOT entitled to act like jackasses and bully that doctor and the caregivers in their practice. We are NOT entitled to anything other than what is laid out in our pain contracts, and to jeopardize that by being abusive makes absolutely no sense whatsoever.

You'd think that adults would be capable of realizing that without being told. But since some cannot seem to figure that out on their own, another layer of contractual responsibility has been laid down upon the rest of us. Once again, medical care for chronic pain patients like myself is being impacted by people who don't know how to act. Our physician is one man, dealing with hundreds of patients, and the rules have to be the same for everyone. No exceptions.

I don't blame my doctor for adding that stipulation to the pain contract he requires his patients to sign. Not one bit. I'm just shocked that it was necessary to do that at all.

Thanks, ungrateful and abusive asshats. Thanks for your ridiculously idiotic behavior and choices.

...I can't wait until you're fired...