When a Doctor Becomes the Patient Seeking Pain Relief
As a physician I’ve taken numerous CME (continuing medical education) modules about pain and the opioid crisis. I’ve even had training in suboxone prescribing and obtained my DEA X number. But it was a recent journey on the other side of the exam table that opened my eyes to what it’s like to be a patient with severe pain during the opioid crisis.
How My Own Crisis Began
At the start of November, I had severe right CVA tenderness on my back and flank pain. Trying to avoid the ER, I went to an urgent care clinic. The kind nurse practitioner, suspecting a kidney stone, referred me to the ER for an ultrasound. At the ER, I had a bedside ultrasound which showed possible hydronephrosis (kidney swelling), and the attending agreed it was likely a stone. I deferred a radiation-heavy CT scan and went home with some tamsulosin, NSAIDs (nonsteroidal anti-inflammatory drugs) and oxycodone. I had a complaint that fit a known clinical scenario, I had a finding on my imaging and I was given a treatment plan and discharged. I was advised to return for a CT if the pain worsened or failed to resolve. I never took the opioids, but I took the tamsulosin and the NSAIDs.
I got better for a few days, but then the pain came back much worse. About 10 days later, I returned to the ER as instructed and saw a different ER attending. I was given a stronger NSAID and this time had my CT, which was negative. No stone. The ER attending returned, told me I had no stone and advised me to go home and take ibuprofen.
At that point my pain was eight out of 10, and I was having significant trouble moving despite the NSAID. I felt like my physician saw me as a drug seeker, rather than a fellow attending. I had already tried ibuprofen and diclofenac at home and the stronger NSAID in the ER, and I remained in unrelenting pain.
But my pain didn’t fit a clinical picture; I had no abnormal result to hang a hat on, so I was discharged with no diagnosis and no treatment plan. Once a stone was ruled out, the attending didn’t widen his differential and obtain additional history and exam findings. He never did more than a cursory 30 second exam. Clearly, I knew something was wrong; I just didn’t know what. ERs, I’ve concluded, are places to rule out or treat life-threatening issues. I was in severe pain, but I wasn’t dying. So, I was sent home. As a clinician, it was a good lesson in how not to work up an undifferentiated problem.
Little Help in Mindfulness
Over the next week or so I tried different things: ice, heat, ibuprofen, moving more, moving less. Nothing worked. I attended my community’s interfaith Thanksgiving service. There were several readings and prayers on gratitude and acceptance. The Shaker song “Simple Gifts” was sung. As I sat in the service, I tried to reframe my pain.
There is a saying in the mindfulness community attributed to Haruki Murakami. It states that “Pain is inevitable. Suffering is optional.” I tried to have gratitude for my pain. I reflected on what gifts it brought me. My experience that month accepting care from others was making me a better caregiver. I certainly had more sympathy for patients with complaints that don’t fit clear patterns and don’t have easy answers. I was more aware of the challenges patients face when they deal with biases in our medical system. My times of pain made me better appreciate times when I was able to more fully participate in activities. But no amount of mindfulness was going to make this pain livable.
I was beginning to get hopeless.
I had to keep looking for treatment.
Finally, a Diagnosis
After the service, a nurse friend advised an osteopathic adjustment, so I made an appointment for OMT. I was describing my pain and moving gingerly around the room when the physician asked, “Do you have a rash? Because this really sounds like shingles.” He checked, and I had no rash. After the treatment, my constant level of pain decreased. But I was still having episodes of agony, albeit less frequently.
I was on call the long Thanksgiving holiday. Like most providers, despite my own significant discomfort, I kept working. Thinking about the osteopathic doctor’s comment, I turned to a doctor’s last resort: Google. A search for “shingles without a rash” brought up descriptions of zoster sine herpete.
Shortly thereafter, I went to an appointment at a pain clinic for an evaluation. The pain physician sat down near me and respectfully listened to my story. He did an exam — something that hadn’t happened in the ER the second time. He concurred that I had severe, unilateral, dermatomal pain with cutaneous allodynia with some myofascial pain as a result. I had zoster sine herpete (shingles without the rash).
His treatment plan included valacyclovir, a nerve block, and other non-opioid modalities. I sat up after the nerve block and could finally take a deep breath. Three weeks of excruciating pain had passed, but finally, it was gone. After five doctors (including myself), two ER visits, and one CT scan, I had a diagnosis and a treatment.
I got perhaps as much relief from having a reason for my problem and knowing the pain would not last forever as I did from the therapies.
I wonder how long I would have suffered had I not been a physician and been able to seek out care from two specialists: an osteopathic physician and a pain physician. I had the time and motivation and persistence to seek out additional opinions after being dismissed. I certainly learned that the ER is no place for a pain patient. My second trip in which I was discharged despite incapacitating pain was a medical failure. I can see how people get desperate and turn to unhealthy coping methods or addictive medications when medical providers offer no help.
The opioid epidemic has resulted in both an overtreatment and undertreatment of pain. At times large supplies of opioids are given too freely. For example, after dental procedures or some orthopedic procedures. I’ve had pediatric patients of mine go to the ER and be doled out opioids for painful menses and headaches. At other times, even if people have severe pain but it’s not classifiable into a packaged diagnosis, like my presentation, they aren’t treated at all or they’re treated with minimal and ineffective strategies. There are reports that women, children and infants, minorities and those with mental illness have their pain undertreated.
I live in an urban medical mecca where well-regarded, evidence-based pain clinics are an option. Of note, the pain clinic where I sought care doesn’t take Medicaid, so it’s out of reach for 25% of the population and an even higher percentage of the disabled population. I’m fortunate to have medical insurance that covers multiple modalities of therapies.
Many insurances are more than happy to cover oxycodone but don’t cover strategies that avoid opioids, such as OMT, massage, cold compression machines or even the nerve blocks and lidocaine patches I found to be a lifesaver. In many regions, comprehensive pain centers are either nonexistent or disreputable pill mills. I have friends in other states with legitimate pain issues and an indisputable diagnosis who struggle to find pain management providers. People in pain are left see-sawing between over and undertreatment.
There is as much a pain crisis in America as an opioid crisis; the pain crisis is the one we don’t talk about. Chronic pain is perhaps the most common chronic illness in America, and the medical establishment simply doesn’t have a handle on it. There needs to be more calibration in treating pain and the right medications and other modalities, titrated for the individual patient, in a respectful environment where people’s needs are understood.
Getty image by Photo_Concepts