live, love, hurt

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.

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.