What I Did When My Shoulder Screamed but My Doctor Shrugged

Over and over: healthy woman, no prior shoulder issues, severe pain starting hours after a high flu shot. Over and over: skepticism or dismissal.

Meanwhile, I couldn’t lie on my left side, reach for dishes or carry luggage. Every keystroke felt like sandpaper on my nerves.

That’s when I realized: No one was coming to rescue me. I’d have to rescue myself.

Building a case

I opened a document and started treating my body like a case file.

I created a timeline: when the pain began, how it progressed and what exacerbated it. I logged what I could and couldn’t do. I recorded every medication, test result and each doctor’s diagnosis.

Before every appointment, I wrote down three questions. It’s amazing how your mind goes blank in a thin gown under fluorescent lights.

I brought that photo of the bandage placed visibly too high on my shoulder. I printed out key academic articles about SIRVA and highlighted passages. Not to lecture doctors, but to show I’d done my homework.

I also started reading the room. If a doctor seemed genuinely curious about what I’d found, that was promising. If they laughed or made me feel foolish, that was my cue to move on.

When one doctor insisted that my nerve pain, which by then had moved down from my shoulder into my fingers, was coming from my neck, he ordered an EMG test. The results proved he was wrong.

I learned to say: “I hear what you’re saying. I’d still like a second opinion,” and “Can you walk me through your reasoning?” Polite, but firm.

The turning point

Almost a year after the shot, I decided to reach out to Marko Bodor, the doctor who published the seminal case study on SIRVA. His practice was 3,000 miles away, but he offered virtual consultations.

When we met on Zoom, Bodor reviewed my scans and said, “This is classic SIRVA.” No “incidental findings.” Not “probably in your head.” Just “classic SIRVA.”

After months of being told I was wrong about my own body, someone with expertise confirmed what I’d known all along.

Bodor referred me to a New York physiatrist who specializes in SIRVA. I received a targeted cortisone injection and physical therapy designed for my specific injury. A skilled manual therapist worked on the connective tissue that had tightened from months of guarding my arm. Slowly, my shoulder began to feel like mine again.

What I know now

Today, my shoulder has regained most of its function. But I’m not casual about injections anymore.

This experience taught me: I am the constant in my own care. Doctors bring expertise, but I bring the lived experience of this body.

Document everything. Keep a timeline of symptoms and treatments. Take photos. Save test results. This isn’t paranoia; it’s evidence.

Do your homework, but lead with questions. Bring reputable research to appointments. Ask: “Have you seen cases like this?” Don’t lecture — collaborate.

Practice the polite pushback. “I hear you. I’d like to pursue this anyway.” Or: “Can you explain your reasoning?” You’re not being difficult. You’re being thorough.

Trust your read of the room. If a doctor makes you feel dismissed or foolish, find another doctor. Respect is nonnegotiable.

Use Google Scholar to find specialists. Search for your condition. Doctors who publish on rare conditions often treat patients with those conditions. The right expert might be on the other side of the country, but they exist.

I walked into this crisis believing I was a decent self-advocate. I came out knowing I’m the only advocate who will never leave my side. And that changes everything.

AARP essays share a point of view in the author’s voice, drawn from expertise or experience, and do not necessarily reflect the views of AARP.​