An Unfortunate Series of Events

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.

The Side Effects of Pain

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.

“HydroContin” on the Horizon?

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.

Being a Minority

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.

Full Circle

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.

The Truth About Tolerance

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.

Research Relieves

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.

A New Beginning

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.

My Life, My Pain

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.

Homeostasis

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.

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To Teach Pain

This is a blog by a guy that lives an ordinary life, except for living every single moment in severe pain. Chronic pain is something most people cannot understand. Pain changes everything.

This is life, in pain.