My First Run-In With Chronic Pain
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.
:)
she should try hypnosis! i think it would have a very good effect on her… dont know how much is it there, neither here… and 100%need for a psychotherapy with prychologist, and not a psychiatrician. (hope i got the spelling;)
many times these problems cause frustrations cuz they(the doc and the patient) dont listen to each other. if she said she doesnt wanna take medicine, she`ll “hate” the doc for a prescription. and the doc will “hate” her for not trying it… give her alternatives instead. if “normal” medicine doesnt help, try to offer her the alternative solutions… maybe she tried it all, but then whats next… ?
As a caregiver of a wife (now 79) suffering from GAD with associated PA or the past five years, I can make a few suggestions from the non-physician viewpoint:
The chronic pain probably certainly has a strong psychological componant and addressing this, however briefly, may be a breakthrough in lessening it.
As Sara says above, just asking her about her life in general, what support group she has, being sympathetic and reassuring about her condition and reacting favorably and sympathetically to her comments, however off the wall, may be a big help to her – and making her feel better about herself will probably lessen the pain.
Because of her medical condition, I have been present at almost all of my wife’s psychiatric and psychological therapy sessions and I have seen this technique work wonders in a situation which started so severely that she had to be hospitalized.
Very compassionate and insightful post. As a sufferer of chronic pain myself, (though with an identifiable cause but little relief because of limited treatment options and failure of most of those options including surgery) — I sense the frustration my doctor feels every time something is tried and fails. I think for those of us who suffer, we just want to know that the physician isn’t going to give up on us, give up on trying to find a solution, and will believe that the pain is very real for us.
Thank you once again for an enlightening post.
I’ve been in chronic pain since a knee surgery in 2003. I’ve seen countless doctors about my problem and we can’t determine what’s causing the pain although I certainly have plenty wrong with my knee. I realize she and the doctors can get frustrated with not figuring out what’s wrong or treatment that will work. But if she doesn’t try something b/c she believes it’ll give her side effects, then she isn’t doing her part. Even if I doubt that the medication or hypnosis/acupuncture/psychotherapy would help, I tried it anyways because I was then able to determine what can help and what won’t.
And like medsleuth said, it’s soo important to have a doctor or surgeon (in my case) who believes me and is doing his absolute best to try to determine where the pain is coming from. It gives us hope especially if previous doctors have given up on you…
Why isn’t she working?
she keeps refusing meds and psychotherapy and will probably continue to ask for more and more costly testing–what about Malignering synd.(sp) or a mild form if there is such a thing-
how about a pain management program and physical therapy program – does she follow through?
There are several pain management cases on ClinicalCases.org along with description of common adverse events when treating pain.
This individual has some preconceived notions about pain management, such as accupuncture is only for work-related stress. Providing her with some information about what accupuncture is successfully used for might get her to reconsider this option.
I am suspicious of an individual that won’t give specifics about side effects. Not that she’s lying, but that this is a broad brush stroke to make her point that she doesn’t want to discuss medication options at all; you may as well not bother with medications at this point, but you may want to revisit them later.
I love the suggestion of PT if that’s not been tried, as well as osteopathic manipulation if that’s an option. These options combined can make an individual feel as though they have some control over their pain, and give them a safe enviornment for touch, which may be missing in a person who has lost faith after being abused at work. Post-traumatic stuff is difficult to address, because there is guilt on the part of the sufferer, the potential for disbelief (or perceived disbelief) on the part of the provider, and difficulty on the both sides with dealing with the power of the mind to effect the body. Is there an option of finding a post-traumatice stress support group for her and would she consdier going? I don’t know what your clinic or her insurance limitations are, but these are some options that come to mind for me.
The “chronic pain” Jill is suffering is clearly psychogenic. She is unwilling to specify side effects which is a strong indicator of psychological problems. When a person complains of the spontaneous onset of pain with no positive neurological findings and does not get even temporary relief with pain medication, and who refuses to even try medications because of the fear of “horrible” side effects the physician/medical student has to put psychogenic pain at the top of the differential diagnosis.
Her complaints of side effects due to amoxicillin sound phony. If she doesn’t have a rash, is not nauseated, and she hasn’t developed a vaginal moniliasis, I would be very suspicious of her complaints of side effects. Until this woman can get some psychological intervention and gain insight into her problem, she is not going to improve. Physical therapy might help, in that it would get her mind off of her problems, at least briefly. Any type of “manipulative therapy” is not going to help psychologically based pain.
I know this may sound medieval but I wish more people like this woman could be treated like my mother was a couple of times in the 50′s and 60′s when life overwhelmed her.
Her doctor put her in hospital for a week or two under heavy sedation, gave her vitamin shots and really just let her get completely rested. It was like a sort of benign lobotomy. After that she was good to go for several years.
Of course, she had good insurance, hospitals were safer, i.e. not overwhelmed themselves like they are today.
A complete and thorough rest would do a lot of us more good than all the pharmaceuticals in the world.
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I am a pharmacy student and grew up with a herbalogist (my dad). I can understand why does she feel so badly about drugs. I know every side effect bout drugs. I myself will not take any drug if there is an alternatives. and during my community service, whenever the patient hears any side efffect that the drug may cause, they will immediatly back out (wrong perception on drugs though i know I have this problem too) and it’s really hard to convince them again (even telling them that there will be monitoring and some of the effects are reversible). I believe that healing always comes with believe and confidence (learn this from my dad). the point i am trying to make here is that if the patient dun believe in using drugs then dun use it coz it’s not gonna work – this is same for any other treatment (accupuncture, hynosis, herbs). As a pharmacist, off course we try to provide the best for our patient. As for your patient with the chronic pain problem – maybe i would find out what treatment she is fond with. well, she may come out with an excuse like the one for accupuncture but there would be nothing left for her if she dun TRY!!!
Hey Graham. Really moving post there. Thanks for sharing. You know I actually did accupuncture for awhile and found it to be really effective in just improving overrall health. There is something to eastern medicine that to me still remains baffling. I also think the mind goes so far in informing our bodies. I am glad you didn’t give up on her. Maybe your sincere desire to help someone who seems to have more than a chronic pain going on will be the best medicine you can give her. go grammy go.
As someone who has chronic pain due to Reflex Sympathetic Dystrophy, it’s interesting to look at the struggle from the doctor’s perspective. I, personally, will try most any medication although I avoid narcodics, and luckily, they haven’t been prescribed. More invasive treatments tend to be harder to accept. Your willingness to listen is extremely helpful. When a patient feels like they aren’t being believed, it increases the stress which makes it harder to respond to pain in a helpful productive way. Just my thoughts. I came upon your post while doing a blogsearch for “chronic pain”.