Dr. Roach: Strenous workout resulted in grossly swollen arms

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.

ANSWER: Rhabdomyolysis (from the Greek roots meaning “muscle breakdown”) 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.

DEAR DR. ROACH: When I seek a second or even third medical opinion, should I tell the subsequent doctors what the previous one(s) diagnosed? — C.B.

ANSWER: I understand the thinking that if you say nothing and get the same answer as the previous physician, it makes the answer seem more solid. You don’t want the second-opinion doctor to be “anchored” to the previous diagnosis (this is a well-recognized mistake doctors make, called a cognitive bias).

In general, however, physicians do best when they are given all relevant information. Telling the second-opinion doctor what the first doctor thought, and why you are suspicious enough to seek a second opinion, will probably get you a better evaluation.