The Hypermobility Spectrum and Life as a Zebra

As a yoga instructor and former professional dancer, I’ve frequently heard people say they wish they were as flexible as I am. But the old adage holds true: the grass really isn’t greener on the other side. During my time as a physical therapist, I’ve learned that the flexibility that earned me praise in gymnastics, dance and yoga actually contributes to my frequent musculoskeletal injuries, chronic pain, and symptoms of neurological, gastrointestinal, immunological and cardiopulmonary distress.

It probably seems obvious that being very stiff can limit your functioning and contribute to aches and pains. Folks with these characteristics likely inherited a tighter collagen matrix and will probably always need to stretch to maintain a healthy amount of mobility. But what many people don’t realize is that human mobility exists on a spectrum, and being too far on either side can cause problems.

Opposite of those with limited mobility, you have people like me, who are hypermobile. We inherited a looser structure to our connective tissue, and our joints move beyond a normal range of motion. Excess movement can contribute to more wear and tear over time, setting us up for injuries that range from sprains to dislocations.

Often my first indication that a patient is hypermobile is their choice of sitting position. Rather than sit in a chair in my office like the rest of my patients, they opt to sit on my treatment table in full lotus, “W” sit, or even legs straddled across the width of the table.

Catherine in “W” sitting

After noticing their choice of sitting postures, I often ask these patients if they have any “party tricks.” They usually light up with a smile and demonstrate their “double-jointedness,” or even their ability to “pop” bones out of place. Hypermobile bodies often discover these tricks when they are very young in order to entertain their friends.  Especially in young, hyper flexible bodies, the stretch these maneuvers impose on ligaments is often not painful. Yet. Eventually, as ligaments do not have the ability to recoil, the amount of mobility in the underlying joint increases over time and becomes larger, increasing the likelihood that it will become painful or even arthritic.

To use my own party trick as an example, I discovered before I hit double-digits that I could wrap my legs around my head. When I was dancing professionally, choreographers would have me roll on the floor or hang from the ceiling in deep backbends, which was fine with me because it didn’t hurt. Yet.

At 23, my dance career ended due to sharp and constant pain that seared through the most bendy part of my back.

Catherine at age 23, before a spondylolisthesis of L5

Luckily my PT’s had already identified hypermobility and given me a Pilates program to help stabilize my joints. As I could no longer dance, I started teaching Pilates full-time, which allowed me to find the strength to support my spine and allow it to heal.

If your PT suspects that your connective tissue is hypermobile, they may have you perform the following movements to determine your Beighton Score, a screening tool for hypermobility:

  1. Standing with legs straight, bend forward over your legs. If your palms can flatten to the floor, add 1 to your score.
  2. Stretch both of your knees as far as they can go into extension (often called “locked knees.”) If your knees go beyond 180 degrees, add 1 point for each knee that can hyperextend to at least 10 degrees.
  3. Straighten your elbows as far as they can go. If they go beyond 180 degrees (often called “double-jointed”) add 1 point for each elbow that hyperextends by at least 10 degrees.
  4. Bend your thumb toward your forearm. If it touches, add 1 point to your score.
  5. Bend your pinky backwards. Add 1 point for each pinky that can bend to at least 90 degrees.

If you scored any points, you have localized joint hypermobility. Those with 4 or more points have generalized joint hypermobility, which is often called benign joint hypermobility, as hypermobility can occur without any symptoms. The term Hypermobility Spectrum Disorder (HSD) is reserved for those of us who have a positive Beighton Score and have frequent musculoskeletal pain. Hypermobile Ehlers-Danlos Syndrome (hEDS) is a HSD that was first identified by French Drs. Ehlers and Danlos and is thought to be caused by a genetic mutation. As we haven’t yet identified the gene that causes EDS-HT, diagnosis is currently based on a mix of objective and subjective conditions.

Feeling fatigued, leaning into ligaments for support

Hypermobile people will likely need to put some effort into maintaining health and wellness. Muscles that have to do more work to make up for loose ligaments will understandably get tired, achy and may even feel “stiff.” A common complaint is fatigue, and many hypermobile people will develop a habit of “leaning into” their passive tissues in order to conserve energy. Although it may require more energy, using active muscles to stabilize these joints will help hypermobile individuals avoid injury in the long run. Learning to pace yourself becomes necessary, and is something I continually strive for.

 

Using muscles actively to support posture

 

Stretching in hypermobile bodies should be limited to tissues that are objectively tight. As a dancer, I was taught to stretch stiffness away. While this approach often makes sense for tighter bodies, I was regularly stretching into ranges that were likely not helpful. For example, when my legs felt stiff as a teenager, I would put my foot up on the seat of a chair and go beyond the splits in order to feel a stretch. The splits (legs positioned at 180 degrees) didn’t give me any sensation of stretch—in fact, I often did my homework in this position, as it was a comfortable way for me to sit on the floor. Being assessed by a PT who understands hypermobility can be very helpful to establish what specific areas need stretching, and which areas need stabilization.

If you are generally hypermobile, it is critical that you exercise regularly and keep your muscles strong to make up for the loss of support from your passive structures. Stabilization exercises will avoid over-stretching hypermobile tissues and strengthen muscles in a mid-range to provide support to vulnerable joints. Proprioception, or body position awareness, is often compromised in hypermobile joints, so it’s helpful to initially work with an experienced professional to ensure appropriate technique with exercise.

Hypermobility is linked to many other medical conditions that are beyond the scope of this blog, such as gastrointestinal issues, fibromyalgia, chronic fatigue, pelvic organ prolapse, anxiety, autonomic nervous system disorders (dysautonomia), fainting (syncope,) dizziness and even heart conditions like valve prolapse or aortic dissection. Therefore, it’s important to find medical professionals who understand hypermobility and can help create a proactive plan to minimize risks and improve symptoms.

In medicine, there is a saying: “If you hear hoofbeats, think horses.” It is intended to remind medical professionals not to overcomplicate things. Hypermobility Spectrum Disorders, however, can be complicated. Hypermobile patients are often the exception to the rule. As such, we are frequently referred to as “zebras.” In my own experience, being identified as a zebra was a helpful and necessary step in improving my symptoms and building my support network. Those on the hypermobility spectrum may appear to be healthy and fit, which makes it difficult for others to understand why they often feel tired and unwell, and can even confound their physicians who are unfamiliar with HSD. I hope that sharing my story raises awareness and helps those with hypermobility symptoms find the support that they need.

For further diagnosis of Hypermobility Spectrum Disorders/Ehlers Danlos Syndrome, you may consider the 2017 EDS International Classification.

Click on these links for more information on Hypermobility Spectrum Disorder and associated symptoms.

I’d love to hear your thoughts about hypermobility! Feel free to share in the comments section below, or contact me here.

Namaste,
Catherine

4 thoughts on “The Hypermobility Spectrum and Life as a Zebra

  1. Kudos. This is a well-done and needed resource. There are a lot of misconceptions out there about EDS and related hypermobility syndromes (not to mention unanswered questions). I see great, reliable, and honest things coming from your blog. If more healthcare providers had this level of comprehension regarding these types of diagnoses then many people would suffer far less. Keep it up!

  2. I can do reverse Namaste, legs up over the back of my neck, fingers folded over each other and I have a dilated left atria. Recently I’ve been diagnosed with POTS. Are all or some of these also EDS qualifiers? Thanks.

    1. Hi Rachel- it does sound like you are on the hypermobility spectrum, but none of the things you mentioned are qualifiers for EDS. Although POTS is highly correlated with EDS, a diagnosis of POTS or dysautonomia is not currently listed as an indication of hypermobile EDS. It is possible that research will clarify the relationship between POTS and EDS and as we learn more, POTS may be added to the diagnostic criteria for hEDS. Nonetheless, it is worth mentioning to your physicians, especially your POTS specialist, that you have some characteristics of hypermobility. Wishing you all the best for health and healing~. C

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