The Mysterious Ailment That Caused Me Months of Pain

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I wake up pinned to my mattress. I cannot move my shoulder to get out of bed without searing pain. Just that simple rolling movement is more than I can bear. My knees are also so painful, I

can’t imagine putting weight on them.

“This is ridiculous. Just do it!” I command myself. “One, two, three!”  I roll over and experience such agony that I end up collapsed on the floor, sobbing. The thought that I might have to

live my life this way causes me to lose it even more. What is happening to me?

It first started in March 2024. My knees and shoulders were suddenly feeling a little creaky. No big deal. I have had osteoarthritis in my knees for a while. I tried the usual — heat, ice,

over-the-counter pain relievers, knee brace, stretching. It’s not working. So, I waited — sometimes these things just work themselves out. By the end of the month, I realized I was in real

trouble. Those four joints are causing me substantial pain, especially the left knee and right shoulder.

I booked an appointment with my regular orthopedist. A magnetic resonance imaging (MRI) of my shoulders shows minimal arthritis wear and some bone spurs, but nothing that would warrant

surgery or that explains this pain. My orthopedic surgeon thought it was my arthritis kicking up again. He prescribed steroid injections into the joints and physical therapy twice a week.

For the next two and a half months, I follow the regimen thoroughly, but I am getting worse instead of better. If I drive for any length of time, my thighs start screaming at me. I often get

out of the car with so many aches that I must lean on the hood and shake out my muscles before I can move. Finally, I wake up to that horrible morning in June 2024, when I could barely get

myself out of bed, and realize I just can’t go on like this.

Worried and frustrated, my husband asks: “What if this isn’t osteoarthritis? What if this is something systemic, like Lyme disease?”

This, of course, necessitates a call to My Cousin the Doctor, Andrew Leavitt, M.D., a retired internist who lives in the San Francisco area. He’s the one everyone in the family calls to get

free medical advice. Before I even finish my story, he says: “Polymyalgia rheumatica. I’ve had it. Go see your primary care person right now.”

Poly-what? In June, I tell my story to Laurie Gordon, M.D., my internist in Stamford, Connecticut, ending with, “My Cousin the Doctor Andy says to ask you about…”

“Polymyalgia rheumatica,” she finishes for me. It’s an inflammatory disease that attacks muscles, usually in the shoulders, arms, back, thighs and hips. I’m a little unusual in that my knees

are affected.

According to Gordon, I am in the sweet spot for developing polymyalgia rheumatica (PMR), as it almost always affects people over 50 and is more common in women. (I’m 68.)  Also, Caucasians

with ancestors from Northern Europe are at higher risk. (Hello, some shtetl in Belarus. Thanks for nothing.)

She orders a blood panel that shows that I have heightened levels of two indicators of inflammation: c-reactive protein and erythrocyte sedimentation rate, but it also shows I am negative

for any tickborne diseases and rheumatoid factors. Part of the criteria for PMR diagnosis is that the rheumatoid arthritis serologic markers should be negative, as some symptoms can overlap

with rheumatoid arthritis. But this only shows that I have inflammation, not from what.