Autumn is my favorite season back home in St. Louis. Out there the blasting heat slacks off to reveal a serene climate with sunny blue skies and a constant cool breeze. The leaves spend a leisurely month or two shifting between various hues of orange and red before finally releasing their grip and slipping softly to the ground where they inevitably cover the yard and require raking and burning more than a few times (for the sorts of people that enjoy lawn work). Autumn is more like a soft summer, where you can relax outside without sweating or shivering. Baseball winds down and we enjoy the post-season. Long drives down the river with the windows (or top) down, taking in the crisp air the water seems to breathe. This lasts through October (it’s never too cold to go trick-or-treating) and well into November. Back home in St. Louis, winter’s heart rarely arrives before January.

Here in Maryland there doesn’t seem to be an autumn so much as a brief transitory period between temperatures in the 90s and temperatures in the 40s. The leaves briefly begin to redden and suddenly skip the other colors of the spectrum and drop to the ground, dead. It’s almost as if winter is in a hurry to reestablish it’s firm grip over the land and air, and freeze my poor joints to bits. I haven’t met anyone from Maryland who lists autumn as their favorite season. I can’t say that I blame them. For autumn is so bleakly chilling here, and with cold comes pain.

I used to think it was an urban legend; why would the cold make things like arthritis hurt more? The temperature in your body doesn’t change, so why would it? The most common explanation–changes in barometric pressure–don’t even hold much sense either. Barometric pressure doesn’t change much more than 1mm/Hg during the seasons, and it changes a lot more than that during thunderstorms. Thunderstorms certainly don’t make my pain worse. It doesn’t make much sense. That, of course, doesn’t matter to pain. Pain doesn’t care about urban legends or even much about making sense, and so pain does hurt more in the winter. I’ve been living with significant pain for a number of years now, and I have come to realize that my pain at least doubles–if not triples–in the winter months. They are miserable, and it seems every single day is a struggle to make it through and try to find a few hours of sleep somewhere in-between the hurt. Increasing your medication for this period of course means you’ll have to go through the struggle of decreasing it when the weather warms, if you do indeed decrease it at all. Decreasing pain medication if your pain hasn’t lessened is a daunting task. One must usually simply grin and bear it, and hope for the warmth of the sun.

This bleak week of weather we’re experiencing here in Maryland now is but a grim warning of things to come. Last year I thought this week was a fluke in the weather and that at least a little bit of autumn would return to embrace me for a few weeks yet, but this year I know better. I know winter’s heart is coming fast, and with it, my pain is coming on strong. I keep reminding myself I need to move somewhere quiet and gently warm. I love the weather, but I’d rather have boring weather than furious hurt.

I never quite understood exactly why I hated winter. Now I know.

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.

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.

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.

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.