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.