I saw a patient this week with what my attending and I believe to be some sort of chronic pain syndrome; I call it a “run-in” because it was so damn difficult and frustrating for both parties–the patient and the doctor.
To be honest, I don’t know a whole lot about these syndromes–just that they’re usually in women, and usually consist of very long-standing pain that is refractory to multiple medications, and often has no etiology we can see on scans. Many times labs will be completely normal, too. These problems usually begin around the time a person has a very stressful life event–loss of a family member or loved one, sexual assault, etc. Then this pain starts, and it won’t go away, no matter what we do. Some people think the pain is psychogenic–caused by the mind–but let’s make it clear: this doesn’t make the pain any less real, severe, or exhausting than any pain with a clear cause. From what I’ve heard, the doctor-patient relationship can be very challenging with patients with these problems. On the patient’s side, he or she may think the doctor is not doing his job, and leaving the patient to suffer. Or he or she may think the doctor doesn’t believe him or her. On the doctor’s side, it’s incredibly frustrating (and questions your ability as a doctor) to have a patient that just doesn’t seem to get better, no matter what you try.
And so it was that I saw Jill. Jill has had chronic pain since 1998, when her mother died and she was emotionally abused at her place of work. She has it down one arm, and it never goes away. It’s now so bad that she can’t sleep at night, maybe getting two hours of sleep maximum. She’s no longer working, and has no health insurance. Jill has been to many doctors, many emergency rooms, and never had any success; her doctors always prescribe her a medication that she says gives her terrible side effects, and which she cannot continue to take. (You can imagine Jill is frustrated with doctors and medical folks, as they clearly haven’t had any luck treating her so far.) They’ve tried valium, ambien, and trazodone, all powerful drugs that should have zonked her out. These didn’t touch her. I ask about other medications she may have tried in the past “Any opioids, like codeine or vicodin? Any drugs like gabapentin or neurontin?” She immediately says, “I’m not taking any drugs. I’m sick of trying drugs. My father was a pharmacist. I can look at any drug and tell just by it’s name that it’s going to have side effects. And that it’s not going to work.” She produces a list of drugs she’s taking, including amoxicillin, a pretty standard antibiotic, for an ear infection. She says that “all these give me side effects.” “Even the amoxicillin?” I inquire. “Yes, that one just gives me terrible side effects.” I ask her what the side effects are, and she says she “can’t even describe them.” My initial instict was to press her to try to find out what her side effects are, but I let it go.
I’ve never experienced this kind of reaction before, but I grow concerned–we’re not surgeons, what else can we do besides give drugs and suggestions for other ways to fix her pain? So I take a step back, and ask Jill, “So what are your goals for this visit today?” She replies, “I want a scan of my head, and I want to get rid of this pain so I can sleep at night.” I say, “Okay, we’re here to help, and we’ll do our best to try to help you today.”
I examine Jill, doing a full neurological exam, and she’s very weirded out when I shine a light in her eyes, check the feeling in her face, and ask her to shrug her shoulders. (Clearly no one has even done a neuro exam on her, gone straight to their diagnosis.) So I go present to my attending, and we go see Jill. We’re kind of at a loss for what to do. We’re happy to refer to the county hospital for a scan, but it’ll take 3-4 months to get. When we come to the subject of her pain, we suggest some medications that she hasn’t tried that may work, but she refuses them all. We say we’re kind of at a loss–we repeat that we’re happy to help, and it’s her body, we can’t force her to take anything–but if not pills, we’re stuck. My attending smartly suggests accupuncture, and she says it won’t work (“that’s only for work-related stress”). She clearly was getting frustrated with us, and we were running out of options.
We left it at that–giving Jill a prescription for a medication that she may or may not fill. She left upset with us, I’m pretty sure. I don’t know what else I could have offered her, especially without health insuarnce, in a free clinic setting. I probably should have directly asked her if she felt depressed or suicidal, as I was reminded later. But what could have I done with that information? She probably wouldn’t take an anti-depressant, and without insurance, she’d be pressed to find a talk therapist. I probably could have referred her for a psych consult at the county center, but she’d already seen a psychiatrist and had a very bad experience again.
I feel terrible for Jill. I have my own chronic pain stuff, but with a visible cause and some decent (but nowhere near acceptable) treatments. If I see a doctor about my problems, he recognizes my problem and gives suggestions. But with Jill, she doesn’t even get that. She gets another prescription and another referral to another doctor, without successful treatment. I almost hope that our scan we ordered finds something–anything at all. Even a blip, some noise, or just a smudge on the monitor. At least then she’ll feel like there’s something there, something real, that she can fight against. For now, though, we don’t know what’s causing her pain, and we probably don’t have anything to treat it.