Donovan Guerrero doesn’t know where he’d be today without physical therapy, but he knows pain would be a much bigger problem in his life.
The 23-year-old college student who lives in New Hampshire has had chronic pain for as long as he can remember, stemming from his severe hemophilia A.
“I think I was 5,” he says. “I’ve always had a hard time with my ankles, but I’ve had muscle pains and even oral pain.”
As a child, there were bleeds, injuries, and chronic pain that kept him from playing sports like he wanted to.
“I was on recreational basketball teams in middle school and high school, but I had to sit out probably three-quarters of the games because of bleeds,” Guerrero says.
One thing he has stuck with over the years is physical therapy, or PT.
“I’ve been doing physical therapy off and on since I was a kid,” Guerrero says. “I tend to go in seasons. Summer is always tough for me with injuries and bleeds, so I go a lot in the summer months.”
Guerrero stretches and does exercises that build strength and stability, which are key to recovery and injury prevention.
“It helps alleviate pain just by keeping me active, which is the best thing you can do for your body when you’re not under an acute injury or bleed,” he says. “I appreciate the fact that PT provides accountability. I wouldn’t be able to do this on my own because I don’t have the education and the training.”
Chronic Pain: A Widespread Problem
Guerrero is far from alone. Up to 58% of people with hemophilia report having chronic pain, compared with 20% of the general population, according to research gathered by the National Bleeding Disorders Foundation’s Medical and Scientific Advisory Council (MASAC). And people with hemophilia say their chronic pain affects their general activity (74%), work (71%), mobility (70%), and ability to maintain relationships (56%).
“Chronic pain is a big problem among the hemophilia population,” says Tyler Buckner, M.D., chair of the NBDF Pain Initiative Task Force. “We’re seeing a significant impact on patients’ quality of life, from limiting their physical activities to affecting their mental health and social interactions.”
Buckner, a hematologist at the Hemophilia and Thrombosis Center at the University of Colorado Anschutz Medical Campus, emphasizes that chronic pain is often tied to joint damage caused by repeated bleeds, especially for people who lacked access to adequate treatments earlier in life.
Managing chronic pain in people with bleeding disorders is complex. Many traditional pain relief methods, such as nonsteroidal anti-inflammatory drugs, or NSAIDs, are often not advised because of bleeding risks. Opioids sometimes are reserved for treating chronic pain, but their use is limited by potential side effects, including tolerance, dependence, and addiction.
Physical therapy, however, has emerged as a cornerstone in treating chronic pain, offering a safer, more effective approach that goes beyond medication.
Physical Therapy: A Vital Resource
Physical therapy has become an indispensable tool in managing chronic pain for people like Guerrero. By focusing on movement, physical therapy helps reduce pain, improve mobility, and prevent future injuries, though access to specialized care remains a challenge. Not everyone lives near a hemophilia treatment center or has a physical therapist trained to understand the intricacies of bleeding disorders.
That’s why MASAC published physical therapy recommendations for chronic pain management earlier this year.
“We recognized that chronic pain is a pervasive issue in the bleeding disorders community, and we needed to equip physical therapists with the knowledge to manage it well,” Buckner says. “This document provides a framework for PTs to safely and effectively treat patients, regardless of their prior experience with bleeding disorders.”
Key Messages for Physical Therapists
The MASAC recommendations offer details for physical therapists managing chronic pain in people with bleeding disorders, recognizing that patients will have unique needs.
“There is no one-size-fits-all approach to pain management. The document really reflects that,” says Nancy Durben, a physical therapist at the Oregon Health & Science University’s Hemostasis and Thrombosis Center and lead author of the MASAC communication. “It’s meant to be flexible, customizable. We wrote it in a way that hopefully provides physical therapists with more options for treating patients who have bleeding disorders.”
The document begins with recommendations for conducting a proper assessment, suggesting that physical therapists use a combination of patient- and clinician-reported measures of health-related quality of life and functional assessment tools to develop a personalized care plan.
Interdisciplinary Approach
The document emphasizes that while physical therapy plays a critical role, it’s not the only component of chronic pain management. An interdisciplinary approach involving medical providers, physical therapists, psychologists, social workers, and pharmacists is essential.
“Chronic pain is multifaceted and requires a team effort,” Durben says. “People benefit most when we combine physical therapy with medical management, psychological support, and patient education.”
Psychological support, for example, addresses the mental health concerns of chronic pain, such as depression and anxiety, which are common among people with bleeding disorders. Although medical providers are the ones who prescribe medications for pain, pharmacists can also partner with the health care team to offer guidance so that people receive the safest and most effective treatments while minimizing risks.
“Our goal is to create a holistic treatment plan that addresses every aspect of the patient’s pain experience,” Buckner says. “It’s about providing comprehensive care that adapts to patients’ needs over time, ensuring they have the support and resources to manage their pain.”
5 Elements of Physical Therapy for Chronic Pain
When managing chronic pain in people with bleeding disorders, physical therapists should consider each person’s specific impairment and participation goals, according to new recommendations from the National Bleeding Disorders Foundation’s Medical and Scientific Advisory Council. The treatment recommendations are divided into five categories:
- Education. Everyone with a bleeding disorder should receive education on pain, musculoskeletal anatomy, biomechanics, joint health, exercise safety, and the prevention and treatment of bleeding episodes.
- Aquatic therapy. Aquatic interventions should be offered as part of the physical therapy plan of care, leveraging the properties of water to reduce pain and improve function.
- Therapeutic exercise. Programs that include strengthening, stretching, and aerobic exercise should be tailored to people’s needs. It’s also recommended that pain management programs include mental health services to reduce the effect of pain and complement therapeutic exercise.
- Manual therapy. Manual interventions, including joint mobilizations and soft-tissue work, should be part of an individualized treatment program.
- Other therapeutic methods. Transcutaneous electrical nerve stimulation, cryotherapy, and heat therapy should be offered, although there is limited evidence of their efficacy, so careful monitoring is recommended. Other methods, such as dry needling, acupressure, cupping, blood-flow restriction, and instrument-assisted soft-tissue mobilization, should be used only in coordination with a hematologist because of the potential risk of bleeding.
Coping Strategies from a Health Psychologist
Chronic pain and mental health are intimately connected, says Matthew Kivel, Psy.D., a psychologist at Oregon Health & Science University.
“Pain is a physical sensation, and we know chronic pain is especially prevalent among people with bleeding disorders,” he says. “The mental health component — it’s sort of like the volume gauge on pain. Your pain can feel more intense or less intense based on the psychological and emotional factors you are having with the pain.”
Kivel says anxiety and depression are two common mental health conditions that can increase the experience of pain. They can also worsen pain by making it more difficult to take steps to alleviate it.
“It’s cyclical. The more psychological distress, the more that your pain can be intensified,” he says. “And when you’re depressed, when you’re anxious, it’s harder to do the things that a physical therapist might recommend for pain.”
That’s why the recently published physical therapy recommendations from the National Bleeding Disorders Foundation’s Medical and Scientific Advisory Council suggest psychosocial support. Kivel says working with a health psychologist or a mental health provider with experience treating chronic pain can help people learn coping strategies. Two such strategies are:
- Activity pacing. This involves working closely with your physical therapist to determine a safe range of activity and, within that, pushing yourself a bit further than you thought you could go. For instance, if your physical therapist says it’s safe to walk for 10 to 15 minutes and your goal is 10, push yourself to walk one extra minute.
- Sensory distraction. With this technique, you’ll focus on something other than your pain. “Your brain can only hold so much sensory information at a time,” Kivel says. “If you focus on something outside of the pain, it can make it easier to not be as impacted by it.” If you have pain when walking, for example, focus on the sights and sounds around you, or try chewing gum and focusing on its flavor and texture.
Moving Forward with Hope
For Guerrero, the combination of physical therapy and caring providers has been crucial.
“Pain, for me, is lifelong,” he says. “But my team has really helped me live better with it so I can have a high quality of life.”
The MASAC recommendations are a significant step toward improving chronic pain management for all people with bleeding disorders. As the community continues to advocate for better pain management practices, there is hope that people like Guerrero will have the resources and care they need to live active, fulfilling lives.
For more information about how to limit and control pain, visit Steps for Living.