Opioids: an "n of 1" reflection

12 Sep 2015

Once I sobered up, the mate (an internist) and I had an interesting philosophical discussion on pain.

This was a few days ago. I have what has finally been identified by x-ray as a separated a/c joint in my left shoulder. For the last three months, I’ve been in pain most of the day, which isn’t nearly as problematic as the searing pain at night. It wakes me up about every two hours. My bike wreck back in early June is probably to blame, but the two hard falls I took from our canoe (stepping out onto oil-slick mud) a few weeks after the bike wreck—well, those didn’t help the first injury.

Weeks of denial combined with my usual exercise routine failed to heal it. Five weeks of physical therapy and massage also didn’t help. It kept getting worse. So, recently, my doctor did an x-ray and with the finding of a separated a/c joint, tried to get me in to see an orthopedist. A two-week wait; I will see him this coming Monday. In the meantime, my doctor offered me an opioid to sleep.

I resisted. I resisted because I know the evidence. That opioids may make it harder to get back to regular work. That 1 in 4 patients prescribed opioids short-term may go on to use them long-term, potentially developing dependence and addiction. That “evidence is insufficient to determine the effectiveness of long-term opioid therapy for improving chronic pain and function” but that “evidence supports a dose-dependent risk for serious harms.” That there are good questions about whether opioids even really help, and mounting evidence that they kill people on higher doses at a shocking rate. That my age group is at the highest risk for death by prescription opioids. That I may increase my teenage son’s and his friends’ risk for abusing opioids by having them in the house. That the way we’ve gotten to a national opioid crisis is via one prescription at a time (fed by a lot of disgusting pharma behavior).

I also resisted because in my senior year of high school, I had a codeine addiction. I had been prescribed codeine cough medicine following bronchitis. I found that not only did the green syrup quiet my cough, it also quieted all my anxieties about the problems in my life. It made me not worry so much about my parents fighting, or my best friend and me not talking after her father died of alcohol poisoning, or the teacher who was using me for sex. On the downside, the cough medicine made me suddenly unable to do calculus. But it cured the anxiety I felt about that, too.

The pharmacist figured it out—that I was purposefully working the disorganization of my family doctor’s office to get multiple prescriptions and drinking at least a third of a bottle of that stuff a day. He didn’t figure it out before I gave my speech at graduation, completely stoned. When he did pull me aside and sternly tell me what he had discovered by looking at the records, I had to go cold turkey. I don’t recommend sudden opioid withdrawal.

That was thirty years ago and, since then, my life has gotten a lot better. I’ve used short-term opioids a couple of times along the way, without becoming addicted. Once was during a miscarriage in 1998. The physical pain wasn’t actually that bad—it was an early miscarriage, so it was just like a rough period. But watching endless episodes of “The Rockford Files” and “Columbo” didn’t deaden the emotional pain nearly as well as the drug.

Another time was when I had a migraine that I just could not break. The doctor who saw me was so pregnant she looked ready to pop, and she started crying when she saw how much pain I was in, curled up in a ball in a darkened exam room. She wrote me a script for fifteen pills of some opioid. When I went to get it filled in the in-house pharmacy and they told me it was for fifteen pills, I said, “Please, only give me three. This migraine surely won’t last more than another couple of days, and I have kids in the house.”

The pharmacist came over and got into a heated argument with me about how I “had” to accept fifteen pills. I had just helped an elderly friend try to dispose of the drugs her recently-deceased husband had been on for cancer—including opioids—and so I knew how hard it is to get rid of these drugs if you had some leftover. He kept arguing with me. I finally asked him if he knew what it was like to argue with someone when you have a migraine that makes you want to die. He called the doctor and lowered the script to five pills.

When my doctor recently offered me an opioid script for my shoulder, I decided to dig out that old bottle from its hiding spot and take one of the leftovers to see if it helped me sleep. Although I took it at bedtime, paradoxically it seemed to wake me up. As it took effect, all of my cares drifted away—my worries about my elderly parents’ health needs, my concern over meeting a bunch of work deadlines, my anxiety related to the usual nasty threats being made to me about my writings on gender issues, even my worry that this shoulder is never going to get better. I remembered why I took that stuff in high school. And then I solicited my husband for sex.

He laughed. Not wanting to cause me more pain from having sex—there really should be a Kama Sutra for middle-aged people with specific injuries—he asked me what my pain level was. I said it was about a 3 or a 4. That was exactly the same as it had been without the drug. (For perspective of what a 3 or 4 is for me, I put unmedicated birth at a 7, and bloody dysentery with intermittent loss of consciousness at an 8, based on personal experience.) I said we should have sex anyway because I didn’t care that my shoulder hurt.

The next morning, we got into that interesting philosophical discussion: If a drug doesn’t actually lower your pain, but it makes you simply not care, is it a painkiller? It’s possible that while I was on the drug, my body was still having all the same physiological reactions to pain as it would without the drug. In fact, I noticed that on the opioid, I was still waking up from pain all night long. I just didn’t care that I was awake in pain.

This much I know: taking that drug would relieve my family of listening to me complain about my pain. Because they are lovely, compassionate people, hearing about my pain causes them pain. So, the drug would kill the pain they are feeling from my shoulder.

But did it do anything for me? Since pain is subjective, I suppose not caring is at some level “treating” it?

This may, I think, help explain the disconnect we see between the scientific data that seems to show opioids are not very effective and the endless testimonials from people who say opioids work for them or their family members in pain. They probably “work” for many people at the level of subjectively not making the pain a problem.

Obviously, it would be great if we had really good painkillers, highly effective with low risk. Being in pain this much for this long has given me some glimpse of what people with really significant chronic pain suffer. It must be absolutely horrific. But I also wish that before patients were (re-)prescribed these drugs, they and their doctors actually looked at the evidence and tried to understand the actual efficacy and the risks.

After the trial of one pill that one night, I said “no, thanks” to my doctor’s offer of a new script. I am, meanwhile, considering a neighbor’s offer of “some good stuff, homegrown” that might also make me not care, but with a much lower (virtually non-existent) addiction potential.

Anyway, all this made me think about one thing I really learned from working on Galileo’s Middle Finger—that if you take evidence seriously, you come to be highly suspect of your own subjective experiences as “true.” That is, you understand that while you may subjectively experience things one way, looking at well-collected, more objective scientific data can suggest that you’re not actually experiencing what you might at first think.

I don’t mean to imply that when personal narratives bang up against scientific studies, the studies should always “win.” As I show in the book in particular in the section on prenatal dexamethasone, sometimes “scientific” studies are actually for shit and should not be believed. Sometimes, too, as with the intersex patient rights movement, information gained from individual narratives can help lead to better study design.

But I do wish there was a way for more people to understand that an “n of 1” is just that.

So, yeah, take this “n of 1” post for what it’s worth.