Strenuous workout resulted in grossly swollen arms

DEAR DR. ROACH »

I am a 57-year-old woman in excellent health. I practice holistic wellness, which includes eating nutritiously, exercising daily, sleeping seven to eight hours a night and taking minimum alcohol and no drugs. In May 2019 after a strenuous workout, I developed exercise-induced rhabdomyolysis; my main symptom was swelling of my upper arms. My primary care physician ran my CPK levels, which initially tested at 5,400. I was immediately directed to a nephrologist, and within two weeks I was completely back to normal.

In March 2021, I again contracted exercise-induced rhabdo. This incident resulted in grossly swollen arms (“Popeye arms”) and CPK levels that were 100,000+. After half a day in the ER on an IV, my CPK levels “decreased” to over 50,000. Over a year later, my CPK levels are normal, but I continue to experience swelling in my arms.

Since the first incident, I have seen two primary care physicians, a nephrologist, two rheumatologists and, most recently, a neuromuscular neurologist. Thankfully all tests came back negative (Lyme, thyroid, rheumatoid arthritis, genetic diseases, etc.) however I still experience muscle weakness and slight arm swelling.

Why do I still have these symptoms and what could be at the root of this? — J.B.

DEAR READER » Rhabdomyolysis is an uncommon but dangerous condition. It typically happens in response to exercise, usually exercise that’s done at a higher intensity or of a longer duration than a person is used to, or performed in hot and humid conditions.

The creatine phosphokinase (CPK or CK) is a reliable blood marker of muscle breakdown. Levels as high as you had put a person at risk for kidney failure, as the kidney struggles to filter all the muscle cell contents from the blood.

A small number of people have rhabdomyolysis due to a genetic condition involving the muscle. You may be at risk for this, based on your recurrent episodes and your persistent symptoms.

If standard testing fails to make the diagnosis, the usual suggested diagnostic test is a muscle biopsy. For some patients (I have had two), this is the only way to make the correct diagnosis, which is necessary to give the patient personalized recommendations about treatment and whether limitations on exercise will be needed. The biopsy must be performed by an expert, so the correct stains and reactions are available for the pathologist to make an accurate diagnosis. Your neuromuscular neurologist is the person to ask to see whether it’s appropriate for you to go this next step.