live, love, hurt

In the past, I’ve written extensively on the subject of chronic pain, and opioid therapy to treat that pain. In those writings, I’ve mentioned as an aside that these things apply to me, being that I am a chronic pain patient. What I haven’t done is write extensively on my specific pain, my specific treatment, and how my pain changes my life. There are reasons for this.

The main reason is because–until recently–I didn’t want to believe that my pain affected my life at large. I didn’t want to believe that this can not only affect my life, but it in fact dictates the majority of my day. I wanted to believe that I could take medications and ignore it and continue on the path I’ve chosen without modifying anything. To my disdain, this is painfully untrue.

In high school, I participated in running sports like Cross Country and the long distance division of Track & Field. I ran 6-8 miles every night, and I was in fantastic shape. I continued to run after high school until I was around 19. At this age I started having a dull ache at my tailbone. It was intermittent and mild, so I’d take over-the-counter (OTC) analgesics like acetaminophen, ibuprofen, and naproxen. As time passed and my age grew, so did my pain. The pain spread to my entire lower back and started taking over my life. By the time I was 21 OTC analgesics weren’t working anymore, and I had no health insurance. After being turned away at free clinics under suspicion of drug-seeking, I started going to an ER on a regular basis. They’d occasionally give me a shot of hydromorphone or prescriptions for a few day’s worth of muscle relaxants and opioid analgesics, but 90% of the time they’d also turn me away under suspicion of drug-seeking. At this point, the pain was nearly constant and unbearable. The clinic the ER sent me to for follow-up had a lazy doctor who never treated anything but crotch-rot and runny noses. He sent me to Physical Therapy, and a litany of other specialists within the charity hospital. I had x-rays and MRIs and no one ever saw anything. So, again, I was ignored for what was presumed to be drug-seeking behavior. Then, the aforementioned clinic was aquired by new management, and with this came a new doctor. I gave him a shot, and gave him my history, and he decided to give me a chance. I went through two-week trials of every NSAID you can think of, until he finally agreed to give me opioid analgesics, under the condition that I would continue to try to figure out what was wrong with me, and that he would stop prescribing them when I did. Around the time I turned 22 I moved 900 miles from that clinic, to Baltimore.

In Baltimore I spent about a year making my way through an orthopedist, rheumatologist, gastroenterologist, and a cardiologist. The original orthopedist discontinued the opioids and gave me injections, which worked at first but quickly faded. He gave me a few month’s worth of opioids and referred me to a pain management doctor. This doctor diagnosed me with lateral facet joint hypertrophy, or more plainly, a severe form of arthritis in the joints of my spinal vertebrae. He continued the opioids and gave me a multitude of injections, which didn’t help much. I was still miserable despite the narcotics and one day I broke down crying and he decided to pull out all the stops and put me on some real opioid therapy. I started taking extended release morphine along with the hydrocodone I was already receiving. In the time since I’ve been on methadone, and now transdermal fentanyl fills the role of my 24/7 medication, and the hydrocodone has been replaced with oxycodone. I also have adjuvant medications like muscle relaxants and sedative/hypnotics. All in all, it took nearly four years to get my pain under control.

Now that I see a good doctor–who does his best to help me manage my pain–I thought my fight might be over. It took day after day of good days and bad days before it dawned on me that I only won a small battle, and while I’ll spend the rest of my life fighting, I’ll never win the war. I’ll continue to have good days where the pain is balled up into a corner of my mind, and I’ll continue to have bad days where I’m balled up into a corner of my bed. I’ve always known this, but only recently has it really fully elucidated itself: I will be in gut-wrenching pain for the rest of my life.

Knowing that, it begins to dawn on me that I will be unable to live the life I want to live. A given activity may be restricted or even impossible for me to endure. Walks in the park are now a test of my pain threshold rather than a harmless stroll. Going out with my girlfriend to places like malls is now not only mind-blowingly boring, but back-breakingly painful (one might think this is a good thing, but any time together is good time together). Not only are these things difficult now, but my condition is degenerative; it will continue to get worse every single day, as will my pain. While a walk through the mall may seem hard now, walking at all may be an arduous task in the not-too-distant future.

So where do I go from there? Will I become legally disabled and unable to work? What of my plan to go to medical school? What of all the hard work I’ve already put into school? Medical disability programs in this country are pitiful, and a mere pittance compared to my current income, let alone the future income I could achieve with a medical license. Being a physician is physical work, and carries the longest hours of any profession. I’m not implying that I couldn’t get a degree, but what am I to do with it if my physical limitations continue unabated? Will I be seeing patients or will I be relegated to boring research?

The degeneration could be curbed by strong back muscles, but in order to get stronger I have to exercise, and that is quite difficult when mere walking is a test of pure will. I don’t believe any amount of medication in the world can change this. My medication barely allows me to function in the world. I’m lucky when I get out of bed and get back into it without some horrifying pain in-between, let alone adding purposeful physical exertion into every day. Perhaps if I take a morphine shower afterwards.

As things are I take quite a bit of strong, dangerous medication and it barely manages an uneventful day. I frequently employ the aid of a cane. If I so much as play with my little nieces or wrestle around with my girlfriend, I pay for it dearly. I used to think that bill would stop coming, but I really do realize now that bill controls my life. It controls what I can and can’t do. I can think “don’t let this control me, don’t let this be who I am,” and yet it is anyway. My pain is my life, and my life is pain.

I’ve written about some pharmacology topics before, and usually they’re coherent, but this one is being written when I am rather, well, pissed off.

There’s a group of drugs called opioids, which, simply put, are drugs that behave like morphine. A lot of the general public may have taken these drugs are one point or another, such as after dental surgery. Common examples are Tylenol #3, Vicodin, Lortab, and Percocet. These drugs are all controlled under the Controlled Substances Act. There are different levels of control status, called “schedules.” Schedule I are the most tightly controlled, and Schedule V are the least controlled. What schedule a drug is placed on depends on

1. How medically beneficial it is;
2. How likely it is to be abused;
3. How likely it is to cause physical dependence;
4. How likely it is to cause psychological dependence, or addiction.

(For more information on this topic, see my rather technical piece here)

Drugs that are Schedule I are completely illegal. They’re not recognized as having any medical purpose, and they’re very likely to cause abuse, dependence, and addiction. Examples are heroin, marijuana, etc. Schedule II drugs are very tightly controlled, but can be prescribed. These drugs include highly potent opioids like morphine, methadone, oxycodone, and hydrocodone (unless combined with a non-opioid); amphetamines (used for ADD drugs), and others. Surprisingly, some drugs like methamphetamine and cocaine are Schedule II, because they have some recognized medical use. However, they’re rarely used or prescribed. Schedule III drugs are where drugs like Tylenol #3 and Vicodin fall (Percocet is still Schedule II even though it has a non-opioid). They contain a Schedule II substance, but they’re combined with a non-opioid, usually acetaminophen/APAP (Tylenol) or aspirin. Schedule III drugs are a lot easier for doctors to prescribe, because they’re not as controlled. Schedule II drugs are required by law to be locked in a separate drawer in pharmacies that stock them, and are hand delivered and tracked heavily to reduce diversion to the black market.

These Schedule III opioids like Vicodin are only Schedule III because of the combined ingredient. Well, why does that matter? Drug companies claim the acetaminophen (APAP) enhances the effects of the opioid, and so makes it so you require a lower dose of the narcotic. This has never really been proven clinically, but it is possible. But, if APAP made the opioid stronger, why is it in a schedule that has fewer controls? The real reason these drugs are combined is to deter abuse. Acetaminophen is highly toxic to the liver in overdose. So, if someone pops a dozen Vicodin to get high, the APAP that’s in those pills is going to make them really sick, by causing permanent liver damage. If someone takes a WHOLE lot, it will destroy their liver, and they will die, very, very painfully.

The thing is, people abusing these medications don’t care. They’re going to take them to get high even if it makes them sick, because they just don’t care. So now people are turning up with liver failure from abusing drugs like Vicodin. Now the FDA is considering banning all prescription drugs containing acetaminophen. Their official reasoning is that people are dumb, and they come home from the dentist with some Vicodin and pop those and then think “hey I’ll take some extra strength Tylenol too!” and that exceeds the maximum safe APAP dosage. The FDA max APAP dose per day is 4,000mg. In Europe, it’s 6,000mg. It’s never been proven what’s safe and what isn’t. It also depends on the specific users metabolism. My doctor insists I don’t take more than 2,000mg per day, which is half the legal maximum.

The thing that really gets me is that the FDA put APAP into these drugs specifically to prevent abuse by damaging the liver. Now that it’s working, they’ve decided they should ban these drugs. Who is running this shit? They’re mad at themselves. So if they ban these drugs, how will people that depend on them continue to have pain relief? For example, if a chronic pain patient taking something like Vicodin suddenly can’t get Vicodin because it’s now illegal, what are they to do? They can’t get JUST the hydrocodone component because that’s illegal in the United States. They can’t get Percocet because it would have been banned too. Their only options are to move to morphine, oxycodone, or any number of Schedule II drugs which are a lot harder to get doctors to give you (it’s hard enough to get them to give you Schedule IIIs). An interesting exception is Percodan, which is oxycodone + aspirin instead of APAP. Aspirin has its own overdose risks, including total loss of hearing.

So in summary, the FDA demanded drug companies put APAP into drugs to avoid abuse, and now they’re scolding them for causing liver failure. They’re blaming everyone else for their mistakes, including the patients. Sure, your average person that gets Vicodin three times their entire life isn’t going to lose out on this so much, but what about chronic pain patients that depend on these types of medication in order to lead a normal life. People like me.

Acetaminophen is over-the-counter. Anyone can grab a bottle and overdose, but we need to worry about the APAP content in controlled drugs?

The mind boggles.