As people with hemophilia get older, many grapple with increasing joint pain — a serious consequence of repeated bleeds. Half of men age 50 and older cited “worsening of joint disease and joint pain” as one of their greatest future concerns in a National Bleeding Disorders Foundation (NBDF) survey.
Jennifer Newman, a physical therapist at the UNC Hemophilia and Thrombosis Center in Chapel Hill, North Carolina, says improving chronic pain treatment for people with bleeding disorders is a top priority.
“So much contributes to a person with a bleeding disorder’s experience with chronic pain, ranging from changes in the weather, a poor night’s sleep, insurance issues, new shoes, stress, and so much more,” Newman says. “It’s a lot more than only joint damage.”
ADVANCING YEARS TAKE A TOLL
Older men with bleeding disorders are especially susceptible to joint pain. Newman says recurrent bleeding episodes cause progressive damage to the bone, cartilage, and muscle.
Combine this with age-related osteoarthritis, and diagnosis and treatment can become trickier. “For someone with a history of joint bleeds, these age-related changes can hit harder, leading to muscle weakness, stiffness, and changes in movement that impact daily life,” she explains. This most commonly affects the ankles, knees, and elbows.
That’s certainly the case for William Lankford, a 59-year-old with hemophilia A. “You learn to live with the pain,” he says. “But you also learn what actually works for you with trial and error over time.”
PAIN MANAGEMENT STRATEGIES
Newman says there’s no one-size-fits-all approach, but certain evidence-based options can help reduce pain. “A program focusing on fall prevention and balance, strength training, and maintaining functional mobility is a great place to start,” she says.
Fear of movement is common, says Nancy Durben, a physical therapist at the Hemostasis and Thrombosis Center at Oregon Health & Science University, but she reminds patients that they can strengthen their muscles at any age.
“Getting older does mean we may need to pay attention to our bodies differently and make adjustments to keep ourselves healthy and strong,” Durben says.
The key is combining exercise, like aquatic therapy, with weight management, medication, and psychosocial support. Older patients can especially benefit from physical therapy treatments such as elastic taping and bracing.
Lankford says he relies on movement, nonsteroidal anti-inflammatory drugs, and regular visits with his physical therapists to help him reduce pain and increase mobility. His secret weapon: He doesn’t travel anywhere without a hair dryer. “It can take a pain that’s almost unbearable away. It’s just one of the many tricks I’ve learned to manage without serious painkillers,” he says.