After returning to her home in Elmira, NJ, from a week-long trip to London with her 2-year-old granddaughter, Linda Rinaldi began experiencing cold-like symptoms. Although the initial sniffles and aches subsided, Linda started to experience symptoms that she likened to having overdone it with exercise. Soon, she experienced pain all over — from her neck down to her toes — symptoms that made daily living tasks unbearable.
“I couldn’t get in bed; I couldn’t put the covers over me,” she recalls. “I couldn’t roll over, I had to get my son to come down and roll me over in bed. And I couldn’t drive, I couldn’t lift my arms, I couldn’t walk, I couldn’t brush my teeth, I couldn’t wash myself, I couldn’t take a shower, I couldn’t wash my hair. I just couldn’t do anything. It didn’t really hurt, it wasn’t pain, I just couldn’t move.”
Desperate for answers, Linda turned to her primary care provider (PCP), who suggested that her symptoms might be a side effect of her new cholesterol medication. They made the decision to stop the medication, but her condition continued to worsen. Her PCP recommended seeing a rheumatologist, but the initial appointment was six weeks away. Linda refused to wait, urgently telling the receptionist, “I can’t wait that long. I have to see somebody today or tomorrow or the next day. I mean, I can’t move.”
Her act of self-advocacy was pivotal in her journey toward finding a proper diagnosis and treatment. Within about a week, sitting in her rheumatologist’s office, she was diagnosed with polymyalgia rheumatica (PMR). “I never heard of it; never knew anything about it,” she says.
What Is PMR?
Polymyalgia rheumatica is an inflammatory disorder characterized by the sudden onset of severe pain and stiffness. This discomfort primarily affects the shoulders, upper arms, neck, and pelvic region. Among individuals over the age of 50, PMR ranks as the second most prevalent inflammatory rheumatic disease, following rheumatoid arthritis.
Although the precise cause of PMR remains unknown, research on PMR patients has revealed inflammation in the connective tissue surrounding joints, particularly in the areas of the shoulders and hips. In most cases, the symptoms of PMR can be well managed by medication and regular healthy lifestyle habits.
Questions and Answers — And More Questions
As with any new diagnosis, Linda felt a wave of uncertainty and anxiety for the future. She wondered: “Is this going to be forever?” At this point, PMR had robbed Linda of her ability to perform the most basic tasks, including rolling over in bed, showering, and even holding a cup to drink water. Everyday jobs like driving the car were becoming impossible and even dangerous. “I had to keep my hands on the lower part of the steering wheel because I couldn’t raise my arms,” she recalls. “I couldn’t turn my head. It was very, very scary driving because I couldn’t do anything that you would normally do when you’re driving.”
While Linda did not know much about PMR, she felt a sense of relief in finally having a name and a clear explanation for her symptoms. This also meant the possibility of treatment, which Linda quickly began as her rheumatologist prescribed a regimen of prednisone. However, knowing the side effects that often came with corticosteroid treatment made her slightly wary. “I really did not want to go on because I’ve heard such bad things about steroids,” she says, “but that was the only option I was given.”
To her surprise, Linda’s symptoms began to subside, offering a glimmer of hope. In just four days, she was regaining the ability to move and resume daily activities. Thanks to an informed rheumatologist who was able to quickly identity PMR — this is not always the case as it can mimic many other conditions — she felt relief within one week. Over the next year, thanks to a trusted and dedicated care team who adjusted treatment dosages according to her needs, her PMR was under control and her bloodwork was positive.
A Mission of Compassion and Information
Today, Linda is on a mission to spread the word about PMR and prevent others from the uncertainty and anxiety she experienced. When asked for her advice to others searching for a PMR diagnosis, she says, “Don’t stop. Tell as many doctors as will listen to you what your symptoms are and advocate for yourself…Nobody knows your body, what you’re feeling, and what you’re going through better than you.”
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This article was made possible with support from Sanofi.
