What do Elizabeth Taylor, Sophia Grace (Ellen Show Super Star), and Abraham Lincoln all have in common? They all have (or were suspected to have) hypermobility!
I have a weird knack for recognizing hyperextended elbows and knees in pictures and airports. My husband thinks I am crazy because people-watching in an airport involves me analyzing how people stand, walk, and breathe and discussing how physical therapy would change their life (call me weird, I embrace it).
We all knew that kid growing up who could do crazy tricks with their body. What often starts as fun entertainment, often turns into a painful syndrome with up to 75% of hypermobile adolescents developing pain in their lifetime (Kirk et al 1967). In many cases, hypermobility may be no more than a nuisance, however, a major change to the body such as pregnancy or a car wreck can bring an onset of new and sudden of intense pain.
Signs you or your child may have hypermobility:
- Pain: Widespread pain without a clear pattern, “Growing Pains” become more frequent and interfere with sleep, pain that may come on with increased latency (days after an activity), frequent muscle aches
- Frequent Injury-Prone to ankle sprains, knee/shoulder dislocations, etc
- Decreased Stamina during sport or other physical activity
- Visits to multiple specialists without finding any explainable cause/s for widespread pain
- Frequent Fidgeting which is often due to the inability to find a stable position
- Clumsy or Poor Coordination
- Increased Fatigue
- Spinal Problems such as pars defects, low back pain, scoliosis, and neck pain
- Frequent feelings of weakness or that a joint “may go out.”
- Frequent Joint noises (clicking, popping, locking)
I think I may have hypermobility, how can a physical therapist help?
- Posture: Learning to improve posture to where you are activating muscles to stabilize yourself and not ligamentous stability (such as hyperextending or “locking out” knees and elbows)
- Strengthening: Improved muscle strength will help stabilize joints and prevent pain onset
- Breathing: If you have worked with me, you know I work on respiration with almost every patient! Mary Massery titles one of her courses: “If You Can’t Breathe, You Can’t Function,” and I can’t think of a better phrase to sum up the importance of breathing properly. Impaired respiration patterns whether due to poor posture, pain, or poor motor patterns can significantly affect activity performance.
- Activity Modification: Learning how to perform daily tasks and transitions in a way that does not aggravate pain
- Pain Management: Learning techniques to manage acute pain onset
- Overcoming fear of activity: Often patients become fearful of all activity and sport as they are unsure of what will cause pain next. As physical therapists, we can help guide a patient to safely return to activity.
- Joint Proprioception and Balance Training: Joints have proprioceptors that help the joints feel where they are in space which is often impaired in hypermobility.
- Prevention: Instead of brushing off clumsiness, frequent ankle sprains, and fidgeting bring your child to an experienced physical therapist. It’s amazing what a few visits of balance, strengthening, and posture can prevent when performed correctly from a young age.
Hypermobility Syndrome is underrecognized, poorly understood, and sadly, often poorly managed”
Beighton 1999
If you or your child is managing unexplained pain, I want to encourage you to continue to be an advocate and don’t accept a life that is defined by pain. There are teams of specialists who may help you learn how to function and gain quality of life despite living with pain.
Hypermobility has been a part of my entire career, and I took a large interest in it. I think because I saw positive results with the right interventions and became passionate about helping those who were consistently brushed off, “failed therapy,” or told they were making their pain up.
At my first rotation at Dell Children’s in Austin, a large part of my caseload was hypermobile patients. Then, moving on to a chronic pain clinic at Texas Children’s, I got to know and work closely with many strong and wonderful adolescents who live the definition of perseverance. What is more important is with the right approach, these patients can make improvements.
The tragic part is in severe cases, the number of specialists patients visit before finding someone familiar enough with their condition to provide a comprehensive and effective plan is substantial. When searching for a therapist, ask if they have experience with hypermobility and syndromes such as Ehlers-Danlos Syndrome (EDS). Let’s raise awareness that hypermobility spectrum disorders (HSD) and syndromes such as Ehlers-Danlos deserve the same care and attention we give other illnesses!