live, love, hurt

In March, I was told by my pain management physician that he’d be leaving the office and indeed Hopkins all together. Long story short, Hopkins wanted him to do a bunch of things to patients purely for the sake of bringing in revenue, and he refused to do so and instead quit, taking several other physicians with him. I was told, at the time, that he’d be there until May and in May I’d get several post-dated prescriptions to cover me until he had his private practice set up in June. That plan–like so many plans–didn’t quite turn out that way.

In May I met–for the last time–with my pain management physician. He refilled all my medications and told me which physician I’d be seeing until he gets set up somewhere. This was now not a certainty as I’d been led to believe before. Now he may or may not continue his practice elsewhere, and I’m somewhat concerned. I take the scripts and bid him farewell.

Thirty days later it’s time for a refill. I don’t have a treating physician anymore. I call the office and they arrange for a one-time 30 day refill of my medications in exchange for a urine sample. Apparently it was horrible of my previous physician to simply trust me and not require urine analyses (UAs) in the past, and some more stuff about why he’s a bad doctor and I should stay there. I’m told to make an appointment with the new physician. The appointment was 52 days away, and I had scripts for 30 days.

Thirty days later it’s time for a refill. I call up and this time I’m told that I’m not allowed a refill. Why not? Apparently it was “made clear to me” that the previous script was a “one-time thing” (which it wasn’t [made clear to me]). I was supposed to get an appointment before those scripts ran out! Wait, I did make an appointment. It was 52 days away. How am I supposed to get one 30 day script when my appointment was more than 30 days away? Well, according to “the system” my appointment was “just created” (likely because someone modified it or something and it changed the date it was edited) and that means I didn’t make an appointment and it’s my fault. I go in and they decide that, for yet another urine sample, I may obtain 14 days worth of my medication. Except that you can’t fill 14 days of fentanyl patches because they come in boxes of 5 and 14 days would be 7 patches and they can only fill them per box, so they only give me 5. I tell the office this. When my urine comes back “clean” they give me another 30 days.

Not quite thirty days later is finally time for my appointment. I come in for my new physician, the one that’s been writing these scripts, and the first words out of his mouth consist of some FUD about my current treatment being all wrong, and it’s very wrong for someone as young as me to be on “two hardcore narcotics” (he specifically and repeatedly used the word “narcotic” over “opiate” or “opioid”–both of which are more appropriate for medical professionals–because “narcotic” is a scary-sounding word) and instead I should look into permanent back surgery. I argue that I have no surgical options given my condition and that I’ve already had every interventional procedure that I could have. He tells me of an orthopedic surgeon I should immediately go see for a second opinion. As it turns out I know this orthopedic surgeon. He referred me to pain management–to the very office I am currently sitting in. When I tell him this I’m still instructed to “go back” to get new radiographs and with new radiographs, a new opinion on surgery. The surgeon had before told me the only thing he could offer me were spinal fusions. I turned him down given my age, which he agreed with, and he sent me to pain management which he deemed, in his own words, “the only reasonable next step.” Two years later my only reasonable next step is backwards, it seems. The new physician continues to try to alarm me about my current treatment, telling me that my medications are “dangerous and addictive.” I tell him I’ve been on them off and on for four or five years and have yet to have any issues with abuse or addiction, and that every UA he’s ordered on me has come back pristine. He tells me that narcotics build up in the body and always eventually cause addiction and that they’ll make me sleepy and surely I must be intolerably constipated and throws in every other classic opioid side effect, trying to get me to admit that there’s a reason to discontinue the therapy. I tell him no, the only side effect I even notice is constipation and I simply have a fiber bar or two every day and don’t even notice the difference. He’s angry, realizing that I’m actually educated about my condition and the treatment and ties up the appointment by telling me I have until August to find “other options” before he discontinues my medications.

One of the best parts of this whole thing is that when I first got there a resident finishing up her fellowship came in and talked to me first. After she went through everything she agreed with my current treatment and, after asking how it was working, thought I should increase my fentanyl dose (which I’ve been wanting to do for months). When the attending came in and shot down all that with his bullshit, she looked rather put off and disappointed. I don’t know if she was disappointed because he didn’t agree with her and thus she must be wrong, or because he was being so obviously obtuse about my treatment and there was nothing she could do to help me. The best part of this was that his own Fellow disagreed with him and thought my current treatment should stand. I liked her. She was a very nice lady. I’m sad I’ll never see her again.

Currently I’m waiting for some results from various tests I had with my rheumatologist. He’s a very smart physician. While he doesn’t know exactly what’s wrong with me (he suspects an extremely mild non-specific “type” of Ehlers-Danlos Syndrome, but it’s a wild shot) he told me he was positive it wasn’t progressive osteoarthritis, which is what my pain clinic has been telling me for two years. They also tell me it “just happens,” even to males in their early 20s. I’m also expected to see the orthopedic surgeon that originally referred me to the pain clinic in the first place. I’m not totally sure I’m going to do this, because I don’t see the point. I’m not going to have surgery, and the last time I saw him my options were “surgery or pain management.” Guess which one I chose.

Monday I’m going to talk to my primary care physician about what she could do for me if I lose my medications. The Monday after that I’m going to get the results of all my rheumatology tests, and maybe have an answer and even treatment. If all of this fails, come August I’ll have no answers and no pain management. I will have to quit my job, move home to St. Louis, and try desperately not to curl up into a miserable ball of existence, wondering why I should continue to bother to live.

I’ve written previously on the many side effects of having chronic pain. You have physical and psychological side effects from the medications themselves, and physical and psychological side effects just from the pain itself. The former link is about the physical medication side effects, and the latter is about the psychological pain side effects. This piece is going to concentrate on yet more physical medication side effects, but just for a moment I’d like to expand on the psychological effects from just being in pain.

According to various medical texts, the brain is not designed to be in pain for a long period of time. In fact, the nervous system in general is not designed to send “pain signals” for very long at all. As such, when chronic pain happens often times the neurons that send these signals “learn” to get better at sending them, in the way that your brain learns for memories. A common myth is that people exposed to pain frequently have a higher “pain tolerance,” when in fact the opposite is true. The more often you’re exposed to pain, the more adept your nervous system becomes at sending pain signals. If the same neurons send the same signals for long enough, something called neuronal plasticity happens: in laymen’s terms, those neurons physically change themselves to permanently transmit pain. There is no definitive way to tell when something like this has happened to someone, but it’s a good bet that when all interventional procedures such as disconnecting the nerves themselves (rhizotomy) still fail to provide pain relief, you have this situation. This is bad. There is no way to reverse this process. Your body is now in constant pain. In medical terminology:

Under persistent activation nociceptive transmission to the dorsal horn may induce a wind up phenomenon. This induces pathological changes that lower the threshold for pain signals to be transmitted. In addition it may generate nonnociceptive nerve fibers to respond to pain signals. Nonnociceptive nerve fibers may also be able to generate and transmit pain signals. In chronic pain this process is difficult to reverse or eradicate once established.

Being in constant pain is not only–you know, painful–but it also wreaks havoc on your body. People with high-intensity chronic pain have significantly reduced ability to perform attention-demanding tasks. Pain appears to strongly capture the attention of people with chronic pain; tests assessing the ability to attend show poorer performance than pain-free people on all tests demanding attention. The exception is found with tasks that are highly demanding of attention, where performance between the two groups is equivalent. In experimental testing, two-thirds of individuals with chronic pain demonstrate clinically significant impairment of attention independent of age, education, medication and sleep disruption. Individuals with the highest levels of pain showed greatest disruption of memory traces, suggesting that pain diminishes working memory.

Now that I’ve gotten some of that out of the way, I have another story about physical medication side effects. Last week I was at work. I work some two hours from my home. Right before leaving, I went to use the bathroom but found it difficult to urinate. I didn’t really give this much thought because I’ve had a “shy bladder” for close to a decade. It’s always been stressful and difficult for me to give urine samples for job applications or other reasons. I left work and when I got home a few hours later, I was still unable to urinate. This worried me. Since I usually get home late I tried a few more times and went to bed. When I got up in the morning and got to work I found myself still unable to urinate. At this point I was still leaning toward a shy bladder and figured that if I drank enough I could sort of force it out. This is the technique I use to give urine samples. A few hours later I was very much surprised to find that this didn’t work.

After consuming a large amount of fluids I felt as if my bladder were going to burst and I was in quite a large amount of pain and discomfort. I immediately ran to the bathroom where I was still totally unable to urinate. I realized at this point I had an emergency condition on my hands and tried to convince my carpool to start heading home immediately. By the time they had gathered their things I realized there was no way I was going to make it two hours back home, and decided to run to the hospital across the street from work.

Upon walking into the ER I told the triage nurse I hadn’t urinated for 22 hours and I was in severe discomfort. After a quick sign in with a list of medications and allergies I was rushed off to a room where she quickly (and not as horrifyingly painfully as last time) inserted a Foley catheter where she promptly drained close to 950mL of urine (a normal liquor bottle is 750mL). I felt much better. After a discussion with the physician about the possible causes he was leaning toward my pain medication, as opioids are a frequent cause (but individually rare (less than 10%) side effect) of urinary retention. After a urine analysis (I didn’t have trouble giving a sample this time–it came out of a tube), blood work, and a couple of non-contrast abdominal and pelvic CT scans all came back normal I was told the most likely culprit was the “vast amount of narcotic medications” and advised it would be best the catheter stayed in a few days. I was not entirely happy with that verdict. As I limped out of the ER (and when you’re a male with a tube up your penis, you limp) I was picked up by my carpool and taken home. After a few days of being told my PCP wouldn’t take out a catheter in the office and to go to the ER I realized I could either spend five hours at the bottom of the ER triage or I could take it out myself. I cut the injection port and let the balloon deflate and gently removed it without issue. Within a few hours (and since) I have been urinating just fine.

This story is obviously personal and represents a few things. The physician determined my situation was a side effect of my pain medication and so informed me in such a way as to say “maybe you shouldn’t be taking those medications.” Well, doc, I’d love to not take these medications but without them I can’t function due to Intractable Pain. Maybe if I was on Disability or some other form of I-don’t-work income I could try it and see what happens, but I have a job and a family to support with that job. So firstly it represents bias against people on pain medications, once again. This is a psychological (or maybe even social) side effect of pain medications. Friends and family may shy away from you because you’re on “narcotics” or worse, assume you’re an addict because you’re dependent. I’ve written extensively on how these differ, but the laypeople just fail to understand. There have even been episodes of Intervention-style shows on television wherein a chronic pain patient was accused by a weeping family of abusing their medications and being an addict. A lot of times on these shows it’s true: they’re quite obviously addicts; however, more than once I’ve seen a pain patient taking their medications as prescribed and enduring their side effects only to have this taken as “addiction.” What’s worse is that I’ve seen these legitimate patients forced into rehab more than once because of a bias against medication.

We are sick people. We are sick people with a serious disease. We have pain that’s caused by a disease or is a disease in and of itself. We take medication for that disease, and we withstand the side effects of both that medication and that disease. My only problem is that some of those side effects are man-made, and in a reasonable and educated world should be put to rest. Educate yourselves.

For interested fans of hydrocodone (Vicodin®, Lortab®, Norco®, etc.), a private pharmaceutical company called Zogenix, Inc. is in Phase III trials of a controlled-release version of hydrocodone. In comparison, controlled-release oxycodone (OxyContin®) has been on the market since 1996. A similar formulation with hydrocodone instead of oxycodone could do wonders for patients that can’t tolerant oxycodone or other opioid drugs. Hydrocodone is sometimes known for producing less constipation than other opioids; however, it’s also known for producing more euphoria than some other opioids which could lead to the same abuse patterns we saw with OxyContin®.

When OxyContin® was released, abusers quickly found that crushing the tablet easily defeated the time-release mechanism, causing all of the oxycodone–meant for slow release over 8-12 hours–to be released into the body at once. This caused a surge in abuse of the drug in the late ’90s and well into later decades as well. Zogenix has announced that the release mechanism for its new hydrocodone formulation is the same currently used by Avinza®, a brand-name of controlled-release morphine. Other drugs using the same release mechanism include Ritalin® LA, Focalin® XR and Luvox® CR. The release mechanism is called Spheroidal Oral Drug Absorption System, or SODAS® and is licensed from Elan Drug Technologies. The SODAS® capsules contain tiny extended-release beads that release too much medication if crushed, chewed, snorted, dissolved, or injected, which will likely lead to a sharp increase in abuse of the drug much in the same manner as OxyContin®. However, for those in pain taking their medication as prescribed, it will be a welcomed addition to the pain pharmacopeia.

Under the US Controlled Substances Act, products containing “no more than 15mg of hydrocodone compounded with an NSAID or APAP” are allowed to be treated as Schedule III drugs, but hydrocodone on its own or in amounts more than 15mg are Schedule II, along with morphine, oxycodone, fentanyl, and most other opioids. Due to an additional law, there are currently no hydrocodone-only drugs on the US market today. This drug would change that.

While only in Phase III trials, the drug remains 3-5 years away.

• Zogenix Press Release
• Elan Drug Technologies Press Release

Today, I commented on an old friend’s Wall post on Facebook. This friend was from grade school in a tiny (pop. 1,800) farming town that I spent a good portion of my childhood in. It was about the recent healthcare bill and he was saying inaccurate things about it, so I tried to correct him. Unfortunately, he wouldn’t have any of it. I’m not going to start a Democrats vs. Republicans debate, because both sides are pretty stupid, but during the raging comment thread that followed, a ton of his friends (and people that used to know me from childhood) started commenting on me being a “drug user,” because I have information about my chronic pain condition on my Facebook profile. The thread is long and filled with ignorance, so I’ll do my best to summarize while still making this a worthwhile story to tell.

These people are from a secluded farming town in rural Illinois, near the St. Louis Metro East area. They don’t know anything about anything remotely medical. If their back hurts, they take Benedryl and go to sleep (or become alcoholics). These people only see narcotic analgesics when someone’s passing around some Vicodin along with the joint of marijuana. It only exists for people to take and feel good on. As far as these people are concerned, it might as well be beer for all they care. The first couple of guys told me “we all have aches and pains” and another mocked my “poor little back pain.” I gave them the benefit of the doubt and carefully explained what degenerative facet disease (or “facet syndrome”) is and what it does to you, and what foraminal narrowing (or “foraminal stenosis”) is and what it does to you. I explained it to them calmly, and with no anger. What do you suppose I received in response?

You need to see a doctor. You need help. It’s okay to admit you have a drug problem. Someone will help you. The pain can’t be that bad! The pain is from the withdrawal!

That was a summary of a couple of them… well, the nicer ones, and;

You’re just a junkie that doesn’t want to admit it. No pain can be that bad that you have to go and trick these doctors into giving you drugs all the time. You’re probably crushing them and snorting them or shooting them up. Show us some pictures of your arms, you dirty junkie.

that’s a summary of the vast majority of them. Why is this? Why are people more likely to believe you have a massive drug problem than a simple medical condition? In the world of the chronic pain patients we are used to being looked at with suspicion because of the narcotic analgesics we use every day to control our pain. Most of us are used to this prejudice; however, today I discovered another prejudice that I realized I’ve often been the victim of: not believing the intensity of the pain. I mean, it’s a no-brainer, it happens all the time–sometimes almost every day–but you explain it’s a serious medical condition that employs an entire field of study for specialist physicians and other medical professionals and the seriousness of the matter can usually–at that point–be somewhat understood by the general population. However, there’s always that group of people out there that will never believe you. No matter what’s medically wrong with you, there’s no possible way on earth that you could ever have pain that you can’t just get used to, or grin and bear. Like I said: these are tough farm boys, after all. The only time they’ve seen opioids is when someone’s passing around some Vicodin along with the joint of marijuana. It only exists for people to take and feel good on. As far as these people are concerned, it might as well be beer for all they care. They have no idea that heroin–a drug that has been demonized as to be the worst possible thing anyone can take because they’ll end up on the streets as a junkie–is an opioid, just like that Vicodin they use to relax from time to time. In small rural farm towns like this the drugs of choice tend to be alcohol and tobacco. When it comes to illicit drugs things like cocaine and even (or sometimes especially) meth are soft drugs, go ahead and have fun with them. For the most part, these people would never consider doing heroin–despite the fact they’ve all had a narcotic at some time or another.

The only extremely sad part about this particular conversation is that I went to school with most of these people from ages five through fourteen. Some of us were close friends. These people should know me. These people should be able to be entrusted with the knowledge of my medical condition. A few years out of town, and you’re a dirty junkie. This is why we, as a minority group, tend to not tell most people about our medical problems. It’s not a big deal to tell someone you can’t eat that because you’re diabetic and have to shoot insulin after every meal, but it’s a big horrible thing to tell someone you can’t do something because your pain limits your abilities and you have to take narcotic analgesics after every activity. Suddenly it’s no longer just a medical condition, but you’re a drug addict that’s totally faking it. When no one’s watching, you run and dance and play and do backflips, but when someone’s watching you break out the cane just so people will feel sorry for you.

If only.

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 point 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.

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.

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.