For too many people with a bleeding disorder, pain isn’t well-managed. The landmark Haemophilia Experiences, Results and Opportunities (HERO) international study, supported by Novo Nordisk and completed in 2014, found that 89% of people surveyed had experienced pain that interfered with their daily lives in the previous four weeks. Further, more than half of those in the HERO study indicated they were in “constant pain.”
A growing body of research shows promising results for a range of nondrug, mind-body pain management therapies such as mindfulness and music therapy. Used as complements to mainstays of bleeding disorders management—clotting factor for joint bleeds, physical therapy and carefully chosen pain relievers—these strategies “allow people with bleeding disorders to enjoy meaningful, satisfying, full lives and relationships instead of living in a cycle of pain, fear of pain and pain medication side effects,” says Georgia Panopoulos, PhD, LP, a clinical psychologist in Minneapolis who specializes in pain management.
Ready to give one of these techniques a try? Consult your care team before beginning any new pain management therapy.
Mindfulness is the act of being focused on the present moment, while acknowledging thoughts and feelings. This type of focus can “let you notice pain without having negative reactions to it,” says Christi Humphrey, LCSW, a social worker with Hemophilia of Georgia who teaches mindfulness-based stress-reduction techniques.
Try it: Sit or lie down in a comfortable, quiet place. Breathe normally as you notice how your body is feeling, scanning from head to toes. Then focus on your breath—the inhalation and exhalation—for five or 10 minutes. If you become distracted, just refocus on the breath.
“Actively listening to music occupies your whole brain, leaving little room for pain signals to reach the brain,” explains music therapist Tim Ringgold, MT-BC, director of Sonic Divinity Music Therapy Services in Orange, California.
Try it: Pay attention as you listen to your favorite music. Listen silently or sing along out loud, savoring the melodies, harmonies, rhythms and sound textures. Enjoying a piece of music boosts levels of feel-good brain chemicals such as dopamine, prolactin and oxytocin and reduces the level of the stress hormone cortisol—blunting feelings of pain.
Any activity you truly enjoy can increase your level of endorphins, another feel-good brain chemical that helps block pain signals.
Try it: Anything goes. When Panopoulos asked people with bleeding disorders what they did for fun during a pain flare, the list included massage, aromatherapy, being outdoors, laughing, playing with bubbles and baking.
The postures and gentle, flowing movements of the ancient Chinese martial art are coordinated with mental focus and a consciousness of the breath. Benefits of tai chi include flexibility, strength, balance, relaxation and mindfulness.
Try it: Tai chi instructor Rick Starks offers classes for people with bleeding disorders on Facebook at TaijiFit/Tai Chi for the Bleeding Disorders Community. He also leads an instructional video as part of NHF’s Make Your Move series on the Steps for Living website.