live, love, hurt

The original title of this entry was going to be “Emergency Room,” but I realized that the first entry I ever made on a blog regarding my pain was named the same thing. Then, I went to the ER for pain meds; now, I went to the ER because of pain meds. If that’s not full circle, I don’t know what is.

Opioids are well known for causing constipation as either as an indication (loperamide) or a side-effect, as was my case. Opioid-induced constipation, or OIC, is frequently noted as requiring active prevention or it can be severe. Severe is an understatement.

When I originally started using opioids for pain I noted that, while morphine and thus codeine both caused severe constipation (requiring enemas), semi-synthetic hydrocodone (Vicodin®) did not. For a long time I used only hydrocodone to manage my pain and didn’t pay any attention to constipation because it rarely occurred. I also had low incidents of constipation when I switched to oxycodone (Percocet®) and methadone. After a while on methadone I’d have hard stool, but nothing too severe. It was nothing at the time because I had just come off morphine, which was far worse.

When I switched from methadone to fentanyl (Duragesic®) I figured since it too was a synthetic opioid and thus far I’d only had problems on natural opiates I didn’t worry much about constipation. I should have. My stool usually consisted of extremely hard nuggets and I rarely had bowel movements (maybe once a week). I tried taking low doses of docusate (Colace®) to help, but it wasn’t enough.

One day at work I tried to pass a piece of stool that was not only hard, but far too large to pass. After some severe pain I diagnosed myself with a fecal impaction. I left work early and went directly to the emergency room, as a bowel obstruction is nothing to play with.

While waiting an agonizing three hours to be seen my bladder seemed to get fuller and fuller, and yet when I attempted to urinate I couldn’t. I frequently have this problem in public situations (shy bladder), but I had a nice private bathroom all to myself and still couldn’t go. I knew something was up. When I was finally called back and got a room the physician that saw me concluded I was correct in that it was a fecal impaction and she manually attempted to break the large chunk of stool up by shoving her fingers up there and beating at it. This was, as one might imagine, less than comfortable. I thought this would be it, though, so I endured it and tried to used the restroom to no avail.

Next, the nurse prepared a large enema. I figured this would do it, since they had worked for me in the past and the large hunk of stool was no longer an obstruction (or so I thought). During this entire time I was becoming more and more uncomfortable due to my bladder being extremely full and I was still unable to empty it. I went through four very embarrassing enemas and runs to the bathroom from a largely incompetent nurse (I never saw the physician again until I got her $1,300 bill for the three minutes I had seen her).

Eventually I concluded that nothing was going to work while my bladder was so full. I told the nurse I thought my bowel was blocking my bladder from emptying, and vice versa. The nurse refused to consider this and tried to continue fruitlessly administering painful enemas. I told her to catheterize me, and until she did I wouldn’t allow anymore enemas. Eventually she talked to the physician and brought in a catheter. Now, let me tell you friends, being catheterized with no anesthetic and no pain medication (because I was honest with them about my medications, they refused to administer further pain medication despite my obvious suffering) is an extremely painful experience. It’s definitely a ten on the pain scale. After I was catheterized, they collected just over a liter of urine within five minutes. About five minutes later, I passed the still-huge hunk of stool and went home. As I had predicted, my huge colon and my distended bladder were preventing each other from emptying.

I spent the next two days recovering. I was in extreme pain from writhing around and tensing up every time they shoved a tube in either side of me. I was given no prescriptions upon discharge. I just had to ride it out, just like I had to ride it out under their care.

There are many lessons in this graphic story I’m sharing with you. The main is that, don’t trust medical personnel just because they’re there. That doesn’t mean they’re competent. I spent over six hours in that emergency room and I have no doubt I would have spent another six had I not diagnosed and treated myself. Another is to stress the perils pain patients have to go through. I was suffering a painful condition caused by my pain medications, which I require to function in society. Despite this, they only saw a guy that was having a known side effect of opioids, and they never looked past that. They never saw the pain patient, they saw the opioid user. On this basis they treated me with no respect, likely assuming I was abusing my medication, and also refused to administer further opioids during my stay. Any other person with a fecal impaction that wasn’t caused by chronic opioid use would have received IV opioids for pain relief. No one should ever have to have a large, hard rubber tube shoved up their urinary tract with no analgesia.

Today, I’m very proactive about my bowel regimen. I take much larger doses of docusate and I’ve also changed my diet to include more veggies and less red meat. I also take in regular amounts of fiber, and my bowel habits are fairly normal.

So, even though my back pain is being treated, I was not treated for the pain caused by my medication because I was on such taboo medication. Shame on every medical “professional” I encountered at that hospital. Not only did they prejudge me and treat me stereotypically, they didn’t even fix the problem until I diagnosed and prescribed the treatment myself!

Doctors are sadists that like to play god and watch lesser beings scream.

A long-experienced phenomenon, tolerance is the need to increase the dosage of medication to achieve the same effect. This is most frequently seen in illicit drug abuse. Heroin users quickly have a need to take increasing doses in order to achieve the same “high.” The same goes for other illicit drugs like amphetamines and cocaine. With most drugs tolerance is a complicated process and is not fully understood. In most cases we assume the neurotransmitters (or their receptors) affected by the specific drug type is down-regulated in some way. That is to say, if you take a lot of opioid analgesics your body reduces the amount of naturally-produced (endogenous) opioids, and also decreases the amount of opioid receptors in the body.

Some time ago, it was noticed that NMDA receptor antagonists (dissociative anesthetics) like ketamine, phencyclidine, and dextromethorphan have the side-effect of reducing the amount of tolerance formed to opioid analgesics. This has far-reaching implications because if you can mediate opioid tolerance, you can control the amount of opioid needed for pain relief.

The NMDA receptor both induces and maintains persistent enhancements of the excitability of neurons to prolonged stimulation, or “wind-up.” Wind-up is a key spinal mechanism requiring activation of the NMDA receptor that both amplifies and prolongs certain types of pain. As a result, wind-up may be one of the events underlying prolonged or chronic pain. Evidence from animal studies indicates that this mechanism is involved in the induction and maintenance of certain types of pain, most notably inflammatory and neuropathic.

Neuropathic pains are at least partly mediated by the NMDA receptor, which may relate to changes in opioid sensitivity. All opioids reduce, or with high doses block the input that causes certain types of pain, probably via activation of the presynaptic opioid receptors to prevent the release of primary afferent transmitters and so prevent pain input from actually activating the neurons that make you feel pain. However, if the pain continues, wind-up overcomes the inhibitions of input and the neurons commence firing, causing pain. As wind-up increases the activity of neurons, a higher dose of opioid will be required to block the increased excitability. Thus, at moderate doses, opioids delay wind-up without inhibiting the process itself. In contrast, NMDA antagonists abolish wind-up. Thus, threshold doses of morphine combined with low doses of NMDA antagonists are able to elicit dramatic inhibitory effects, a synergism that suggests low probability of side effects. Importantly, in a model of neuropathic pain where morphine is inoperative, the co-application of an NMDA antagonist restored the ability of morphine to inhibit the response.

All that medical speak translates to this: the pain input that’s prolonged and intensified by NMDA receptors can be delayed by opioids, but not inhibited. However, NMDA antagonists (mentioned above) completely turn off the prolongation and intensification, allowing opioids to take away that pain. Basically stated, it amounts to the aforementioned. Adding a mild NMDA receptor antagonist (in extremely sub-anesthetic doses) to an opioid enhances the effects of the opioid, allowing smaller amounts of opioid, and thus fewer side-effects.

At least there’s one good use for dextromethorphan.

Recently my friend and I have been going back and forth on a campaign called ResearchSaves.org, which is a campaign that promotes medical animal testing. My friend is an avid vegetarian and PETA-type guy, and I’m a medical type guy who also enjoys steak. I don’t advocate for the needless suffering of animals, but I frequently leave comments on his blog defending animal research in certain circumstances, such as the following.

The spinal action of opioids is an excellent example of how basic research in animals can lead to improvements in the clinical relief of pain. The knowledge gained from basic animal studies showing an opioid inhibition of nociceptive spinal neurons and the direct analgesia following epidural and intrathecal opioids was soon applied to humans. Importantly, the use of various different models of clinical pain states has led to animal studies addressing the extent and mechanisms of plasticity in opioid spinal function, since pathological and physiological and pharmacological events can alter the degree of opioid antinociception. It is noteworthy that opioid receptors originally cloned from rats and mice allowed much in vivo research, and ultimately it was discovered that the animal opioid receptors are identical biochemically, and pharmacologically, to human opioid receptors.

These animals were used to develop pain and suffering relief in humans. If a couple of massively overpopulated rodent had to die for me to be pain free, I have to tell you that I’m not that upset by it.

This is a blog where I’m actually going to try to post. Crazy, I know. I have a plan, however.

Instead of boring details about what girl I like or why you simply must listen to the tracks of Lateralus in the Fibonacci sequence, I’m going to write about pain. I’m going to write about what it’s like to have pain all the time. I know, there’s plenty of chronic pain blogs out there, but I’m trying to focus on the fact that it’s real. This really is pain, and this really affects every single aspect of my life. From working to walking to having sex to bathing to wiping my own ass, pain makes everything harder, and makes you want to do them less frequently. I will do my best to present chronic pain sufferers as not drug addicts, but real people that have a real disability, and it’s really not that hard to understand if you really try really hard. Really.

I’ve started off by “importing” some things I’ve written on the topic in the past and put them up as back-dated posts. I’m planning on going through my old blog and importing some of the posts from around 2007, where I frequently started posting on some sort of ache in my back that just wouldn’t go away. Keep in mind 2007 was really two years after it started, and when I started aggressively seeking medical help since I could no longer manage it by myself. I will tag all of these back-dated posts with “imported” as to set them slightly apart from this new endeavor.

What I hope to accomplish is simple. I hope that someone, somewhere, even just one person stumbles onto this blog and finds acceptance of this issue, whether in the form of pure knowledge or in the form of embracing their aunt’s rheumatoid arthritis instead of yelling at her for being late to the birthday party. I want people that have loved ones with a pain problem to understand that no, we’re not using these drugs for fun, and yes, it really is hard to get out of bed. For some of us in pain, we’d rather sleep, because sleep doesn’t hurt.

My ambitions are high, but at least I have them.

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.

Been feeling down lately. Wait, what am I talking about? I’ve been down for a long time. Every now and then I’ll get into a little episode of depression, just like most of us humans. It’s normally inexplicable, and equally harmless. Most times homoeostasis is returned within mere days, but I’m starting to think I may actually have a depression problem.

At first, I thought it was just a bout of homesickness. I don’t particularly care for my life at the moment. So far I’ve managed to convince myself it’s merely a transition–I must simply “hang in there” as it were, while my beloved girlfriend completes nursing school, which will allow us to move anywhere we please–or so the theory goes. The problem with this is I can only convince myself for so long. The cold hard truth is that there is a big difference between plans and reality, and reality has never seemed to have much of a predisposition for conforming to my plans–in fact, it seems to almost have its own plan for my life. I would prefer it left it to me. I find that reality is almost always wrong.

My friends from back home ask me what I’m doing in Baltimore, and when I tell them I work for an engineering company that has me write computer software for the government they’re pretty impressed–if only I were also. I’ve been doing this for a long time, and I’m no longer particularly interested in it. In fact, when I coded as a hobby I vowed I would never rely on it for a paycheck, simply because I cannot maintain an interest in some arbitrary project. I have the “open source itch,” as it’s come to be known. That is, I have an urge to code particular things I’m interested in, and not something that a project manager tells me to code. Fortunately I’m not in that situation–I get to code however I want, with whatever method, style, or language I prefer–but I still don’t get to pick what I code. When I first started this job I ran at full speed; I completed two major projects in the first three months, one of which had been in limbo for nearly three years. I am good at what I do, I just don’t like what I do.

So what do I want to do? Due to various encounters–positive and negative–with the healthcare profession, I would very much like to attend medical school and work as a pain management physician. I don’t know if I’m smart enough, and I don’t think I’m young enough. If I wait until my girlfriend has finished nursing school I will be–at the minimum–three years shy of thirty before I can even start pre-med. I just can’t convince myself this is a realistic thing to do, especially seeing as how we have plans to start a family around that time.

I dreadfully find that I have fallen into the exact same predicament most members of our society do–one that I promised myself I would never be trapped into: not achieving my dreams. Most of us have something happen in their early twenties, and you think “oh, I’ll just wait a year until I can figure this out,” or “I’ll just take a few years to get this right,” and then you turn around and it’s been five, seven, ten years. I’ve spent a mere twenty-three years on this planet–four of them taken away by intractable pain that isn’t stopping anytime soon–and already I feel the pressure of time slowly pushing me farther and farther from my dreams, and closer and closer to mediocrity.

I see my friends saving money, buying houses, having families; I see me stuck, as if running in a dream: never quite able to catch what you’re chasing (or running from). No matter how hard and fast you run, it only gets farther anyway. I’m very afraid that I’ll become like so many blue-collar families–like my own parents: spending their entire lives attempting to ensure a better one for their children. That’s simply not what my life was made for. It was made for greater things than these.

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.

Memorial Day almost killed me.

I awoke under an avalanche of pain, grasping in vain for the bottle usually kept on the floor by my bed. This bottle normally holds little pills of doctor-sanctioned relief, but not that day. The refill date was more than a week away, but I’d already run through my monthly allotment.

I had a bad couple of weeks, so I took more pills than I’m prescribed. A lot more. What am I supposed to do, suffer, even though I have pills that will ward it off? Will doctors ever understand this simple situation? I’m in pain, and it’s not being properly managed. If you were miserable, you’d take the pills too. If it were your wife suffering, she’d take the pills too. I’m not allowed to, because I’m just a chronic pain patient.

Three or so years ago, my lower back started hurting occasionally. I took ibuprofen and brushed it off. A year later, I’d taken so much ibuprofen my stomach couldn’t digest my own fluids anymore. I had no health insurance. It got so bad I finally went to an emergency room one night, and they gave me Flexeril (cyclobenzaprine), Naprosyn (naproxen), and Tylenol #3 (co-codamol 30-325). The Tylenol #3 was glorious for a short week. I could work again and not want to die because of it. I followed up at a free clinic, where the doctor claimed he couldn’t help me, and wouldn’t provide me with medicine. I suffered more, and went to the ER time after time. Occasionally I’d get a shot in the rear and a couple days worth of pills, but usually I was kicked out under suspicion of drug-seeking.

I’d never done drugs.

I moved across the country to get a good job with health insurance, so that I could see doctors who might care. I went through an orthopedist, rheumatologist, a gastroenteroligst, and a cardiologist; I’ve had three failed facet joint injections, two MRIs, more x-rays than I can remember; and, ultimately, was still no closer to an answer. I finally started seeing a board-certified interventional pain management doctor. He put me on Lortab 10 (hydrocodone-10, acetaminophen-500) every six hours. I was so, so very happy to not spend every moment of every day curled up in a ball waiting, hoping, to die. He did some interventional therapy such as nerve blocks, yoga, and was convinced it was my facet joints. Then he was convinced it wasn’t my facet joints. He threw some prednisone and Valium (diazepam) at me, and told me to do an epidural.

He only allows one pill every six hours, but they last two at best. My pain is not managed properly, and I still spend a significant amount of time in a significant amount of pain. So when I have bad weeks and end up taking more than one pill every six hours I’m threatened that he won’t treat me anymore. I’ve been through 10 doctors, three years, a million tests, and I’m still drug-seeking? Please, I live in Baltimore. I could go down to the corner and score an 8-ball far easier than I could get a doctor to prescribe me relief. Cheaper, even. Some days I even consider it, in a dark corner of my mind. Pain will drive you to think and even do things you’d never normally do. No one truly understands pain until you’ve lived with it every second of every day for years.

I dug through the closet, looking desperately for a bottle I may have forgotten about. I dug through couch cushions and checked behind my desk. I looked under the kitchen table and tore my bed apart searching in vain to find a misplaced pill. I took my old, empty bottles and filled them with water to capture any residue left by the pills and drank it down in hideous gulps. I tried calling my doctor, but of course they were closed. I left voicemails. Suddenly, I remembered I’d been calling them for days, trying desperately to get an extension, so I checked my voicemail to find my pain doctor called in some extra medicine to my pharmacy. I was saved. I wouldn’t have to suffer through this. I dashed to the car and sped to the pharmacy. I walked up and tugged on the door only to discover it was locked. I stood back for a moment, then tugged again. Still locked. A sign on the door read “Closed for Memorial Day.”

I stood there for a while before climbing back into my car and staring off into space for ten minutes, tossing illegalities around in my head before accepting my eventuality. I drove home and called off work. I made some tea, got a trash can, and prepared for the wonder that is opioid withdrawal. Twelve hours after my last dose I started to feel shaky, nervous, uncomfortable, and generally terrible. Then the nausea came. I laid at the end of my bed, my head hanging off the edge, staring into the trash can. My bowels started to rumble so loudly I thought it was storming outside, and I made a mad dash for the bathroom with fluids coming out of both ends at once. The rest of my day was spent in the bathroom, puking and shitting my way through the night. It was in full swing now, and I was shaking, cold yet sweating. I had waves of the opposite of pleasure rushing through my body that pushed every last scrap of material out of my stomach and bowels. My eyes were puffy and red; my pupils dilated to the size of dimes. I sweat almost as much as I puked. I couldn’t feel my legs, so I crawled. I crawled around with one eye closed because of double vision so drastic I couldn’t locate the toilet. If I moved my head too quickly my vision would break up into frames, as if I were watching reality on a 35mm projector that wasn’t quite up to speed. I looked like a heroin addict that couldn’t get a fix. My normal back pain was amplified six, eight, ten times. I realized this must have been the definition of hell.

This went on for eight, nine, ten hours before the vomiting and diarrhea subsided and I crawled into bed, shaking, unable to do anything but pray for the day to end. The next morning I awoke in a miserable torrent of pain. I couldn’t think straight, I didn’t feel right. I felt like reality was now different, and my brain was permanently stuck this way. I pulled my miserable heap of a body out of the sweat-soaked pad of a bed and threw myself into a tub of hot water. I soaked for an hour before I managed to sloth out of that and make myself look enough unlike a junkie to drive to the pharmacy and pick up my medication. Within 30 minutes I was back to feeling my own tortured version of normal. The pain was lessened, but present. The major benefit was no longer feeling like a giant pile of walking vomit.

Why is this my life? Why don’t pain doctors understand that their patients are in, you know, pain? I’ve told him a dozen times the pills aren’t enough, and the answer is always “keep taking them anyway.” I’m miserable. My life is a joke. Every second of every day is a painstaking journey through an illustration of the failure of the United States healthcare system. Every test is normal every time. Every treatment fails to provide pain relief or any clue as to the origin of the pain. Why am I 22 and in chronic pain with no trauma? Why does everyone dismiss rheumatological diseases when they fit the best? I didn’t hurt my back, my back hurt me.

So now I’m suffering constantly and dependent on painkillers to even get through the day. I am not an addict. Withdrawal and dependency do not imply addiction. I’m just a minority. I’m just a lowly chronic pain patient, who has abandoned all hope.

This post is mostly to clarify, to journalists, what the difference between drug tolerance, drug dependence, and drug addiction is. Why does some loser like me on a tiny corner of the internet need to clarify this? Apparently, no journalists can be bothered to do any actual research.

I have read time and time again in several prominent publications that all pain medications lead to addiction. No ifs ands or buts, always. Therefore, they are dangerous and evil, we should hate them, and doctors shouldn’t prescribe them.

But who really cares? If these medicines are so widely regarded as dangerous, no one must need or use them, right? This stuff is only used by hard core junkies on the street to get high. These are the narcotics they’re always going after on COPS.

These are all excellent points. It’s too bad none of them are true.

First of all, no one uses the term “narcotic” correctly. In fact, it is so widely misused that the medical profession has completely given up. Now, “narcotic” is referred to as a legal term, and medical professionals use terms like opioids. So, what is a narcotic, really? A narcotic refers to opium, opium derivatives, and their semi-synthetic or fully synthetic substitutes. This means cocaine, meth, LSD, steroids, DXM, and yes, even marijuana are ruled out. None of these are narcotics, no matter how much the police insist upon calling them that. Why does law enforcement do this? I don’t know. Probably because “narcotic” is a scary sounding word. Opium is a milky substance produced by certain species of poppy flowers, and it contains a great many chemicals, called opiates. An opioid is any substance that binds to opioid receptors in the central nervous system (or “any substance which behaves pharmacologically like morphine”). The terms opioids and narcotics are, in essence, synonymous.

So, what are opioid receptors?

The brain works by sending messages between cells to tell those cells what to do. These messages are sent by chemicals known as neurotransmitters. Examples of neurotransmitters include melatonin, dopamine, serotonin, epinephrine (adrenaline), endorphins, and so on. Neurotransmitters that are produced directly by our bodies are referred to as endogenous ligands. These transmitters are made to fit into certain spots on the outsides of cells, like a key into a lock. These spots are called receptors. The ligand for 5HT receptors is serotonin. The ligands for (parts of) NMDA receptors include glutamate and aspartate (specifically, N-methyl D-aspartate). It is thought that all receptors have corresponding ligands, but there are several receptors we know of that we have yet to discover natural ligands for (such as the sigma receptors). A ligand for the various opioid receptors is endorphin.

(Update: A few people emailed me to let me know the ligand for sigma receptors is angeldustin. This isn’t entirely correct. The theorized ligand used to be called angeldustin, but is currently referred to as endopsychosin (never say neuroscientists don’t have a sense of humor). The reason it was called this is because PCP appears to exhibit effects on the sigma receptors, and PCP tends to make you a bit of a nut. The argument goes along the lines of “why would the brain have a natural ability to mimic the effects of PCP on the brain, and in effect make itself nutso.” Some theories of schizophrenia point at the sigma receptors. The antipsychotic drug haloperidol appears to have effects on sigma receptors. We really have absolutely no idea what they do.)

Drugs that act on the brain do so by manipulating neurotransmitters or receptors in one way or another. Some drugs prevent neurotransmitters from being produced, some prevent them from being reabsorbed, and others mimic the transmitters themselves.

In general, there are three ways that a transmitter works on a receptor. In one way, the transmitter binds to the receptor and activates it, causing changes within the cell. These transmitters are called agonists. In the second way, a transmitter binds to the receptor but doesn’t activate it, and these transmitters are called antagonists. In the third way, a transmitter binds to the receptor and partially activates it, and these are appropriately named partial agonists. One interesting property of partial agonists is that they tend to “normalize” receptor activity levels. In the presence of a low amount of neurotransmitter, the partial agonist will increase receptor function. In the presence of a high amount of neurotransmitter, however, the partial agonist will limit receptor activity. This is a type of negative feedback. The best example I can think of negative feedback is a thermostat: when it’s hot, it turns the heat off; when it’s cold, it turns the heat on.

When you take a narcotic painkiller, the drug binds to and activates various opioid receptors in the brain, spinal cord, and gastrointestinal tract. Drugs like this are opioid agonists. The opioid receptors influence many things, most notably pain and mood. Wait, the gastrointestinal tract? Yes, actually, one of their most noted side-effects is constipation, which can be severe. Opioids reduce gut motility, which means it slows down your bowels, which gives your body more time to absorb water from the bowels, which solidifies the stool. If you’ve ever taken Immodium for diarrhea, you’ve taken a very potent opioid (although, one which does not cross the blood-brain barrier and thus it is only active in the gastrointestinal tract, so it does not cause analgesia or euphoria). The effects and side-effects are enourmous and complicated, and if you’re interested in how exactly these things happen, see the Wikipedia article on opioid receptors. We’ll sum it up by saying that opioids invoke pain relief, or analgesia, feeling nice, or euphoria, and, over time, the need to increase the dosage to achieve the same effects, or drug tolerance.

The one we’re mostly concerned about is tolerance. Tolerance occurs because your brain is an amazing thing. When there are larger than normal amounts of opioids in your system for an extended period of time, the brain compensates by down-regulating the receptors. That is, it starts creating less of these receptors, so that the opioids have a lesser effect at the same dose. In order to achieve the original effects (be it analgesia or, in the case of an abuser, euphoria), the dosage must be increased so that more receptors are reached. Other than needing increasing dosages, this is not necessarily a bad thing. This is simply how the brain compensates. This is simply reality. Anyone who takes opioids for an extended period of time will experience tolerance.

So, what does this all entail? Tolerance usually implies dependence. Is this a bad thing? Maybe. Drug dependence means that your brain has become tolerant to this drug to one degree or another, and if you suddenly stop taking it, your brain chemistry is suddenly messed up. This manifests as withdrawal symptoms, which can be severe.

So wait, the journalists are right? Anyone that takes opioids for a while will go into withdrawal? Well, yes, but that doesn’t mean that you’re addicted to the drugs. This just means that, as your brain readjusts itself to the way it was before the drugs were introduced, you won’t be having a great time. This can be avoided by slowly and carefully stepping down your dosage over a period of time. By doing this, the brain adjusts slowly to each new dosage, and withdrawal is minimal or nonexistent. This means that people can take opioids for a week, a month, or even years and, so long as their dose is slowly reduced, they’ll return to their pre-opioid state just fine, and (assuming the reason for taking the drugs in the first place is gone) will be perfectly normal.

Okay, then, what is addiction? Well, many people hold somewhat personal views about this, but I’ll discuss how medical professionals view it. Addiction is defined as a psychological dependence on something. The key difference is that one is “all in their heads,” and one is physical. Whether it’s drugs, sex, food, gambling, whatever. In the case of drug addiction, someone thinks they need a particular drug in order to be normal. You can see the confusion. People who are drug dependent actually do need the drug to be normal. Drug addicts only think they do. They crave the drug. They’ll do anything to get more of it, including selling everything they own, including their bodies. Addicts will continue to do the activity despite harmful consequences to the individual’s health, mental state or social life. Addicts are usually dependent on their drug of choice, and usually experience withdrawal fairly often because of their inability to obtain their drug. This has absolutely nothing to do with addiction. There are several drugs which people may become addicted to, like marijuana, but which do not invoke drug dependence.

(Update: It is worth noting that there is a behavior that is noted as pseudo-addiction, and is defined as exhibiting addiction-like behaviors toward a drug. That is, a patient is obsessed with getting more of a drug, but not because they’re addicted. This is seen often in pain patients whose pain is not being adequately treated. Trust me, if you were in severe pain your entire life, you’d probably be pretty obsessed with obtaining pain relief. This can appear to be addiction, and, very unfortunately, many pain patients which exhibit this behavior will be marked as drug seeking and are doomed to suffer.)

So what makes people become addicted to something? No one really knows. As it is a psychological disorder, it’s hard to pin it down. Anyone can become addicted to anything at any point. The unfortunate thing is that most drugs that people are interested in developing an addiction to tend to be either controlled or illegal. This means they have to turn to the black market, and become criminals in the process. So how many people become addicts? Clinically, for people who are taking prescribed medication as it was prescribed, less than 1% of all patients become addicted. This means that, out of 1,000 pain patients, around 0-10 of those patients will experience addiction. Some people think this is unacceptable, and that it’s better to let those 990-1000 patients simply suffer.

For those of you who aren’t in pain, good for you, that’s a reasonable position to take. Pain is transient, you can tough it out, right? Except when it isn’t transient. Millions of people, including me, are in chronic pain. That means we’re in pain every minute of every day. There are many treatments for many conditions that cause this, but for millions of people the only answer to their pain is to be on opioids long-term. People have a stigma about this because they only time they hear about opioids is when someone ODs on heroin. Because of the <1% of patients, the other >90% have to suffer more. Doctors are terrified to prescribe opioids because of their psychological effects, so they’d rather not treat anyone at all. I think this is stupid, and I don’t understand how, as someone who has promised to “limit suffering,” they can do this. Sure, opioids make you feel good, and in our society that is a Bad Thing™, but for the rest of us who need them to live, please, I implore you, pull your heads out of your asses.

As an honor to my late grandmother, and a good marker in my pain life. This was the first doctor that ever believed me and started writing me scripts. He eventually started giving me regular scripts for Vicodin and really helped me. Shortly after meeting him I moved far away, but we still keep in touch over email and I actually see him on occasions that I return to St. Louis.

My grandmother on my father’s side died on Thursday.

I am still unemployed.

Also on Thursday, I had an appointment with my usual clinic doctor. Apparently, the clinic was taken over by some other “network” or whatever the organizations are, and there was a new doctor. And he was awesome. I ran through my history, and mentioned the possibility of dural ecstasia due to Marfan’s syndrome, and he ran out and got like three textbooks and ran back in and sat down and talked to me like I was his best friend. He made an appointment for me with a cardiologist (though it’s quite far away; October 22nd) and gave me a prescription for tramadol and told me to call back in a week to see if it was working. Unfortunately it’s not, so I guess I’ll try to find some way to say that without appearing ungrateful for the medicine. Maybe this guy will actually figure things out. It sure would be nice.