Hypermobility: The Pro’s and Con’s of Flexible Connective Tissue

Most people who score high on the Beighton Scale become familiar with some of the perks of hypermobility:

  • You can amuse your peers with your circus-worthy feats.
  • You may have soft and supple skin without using lotion.
  • You may be able to reach things that no one else can with your flexible and long arms/fingers, or perhaps you put this feature to good use playing an instrument?
  • When you do get stiff, it can be easier to loosen up your relatively tight areas (if not, I’d suggest seeing an experienced PT who can use appropriate manual therapy on your stiffer segments.)
  • Over time, as the stiffening effect of aging sets in, you will likely become less hypermobile and more– well, plain-old-mobile. Your age-matched peers may get so stiff they can no longer tie their own shoelaces and be envious of your mobility.

Some of the cons:

  • The general population tends to glorify hypermobility. If you are having symptoms related to hypermobility and you look relatively healthy, people may not recognize or be sympathetic to your experience.
  • Poor awareness of the ways that altered (bendy) connective tissue can affect every system in your body extends to the medical system. You may need to educate your medical team and develop excellent self-advocacy skills.
  • It can be difficult to find healthcare professionals who are open to learning, or who are already familiar with hypermobility and some of the issues that may present with it.
  • You may be misdiagnosed or dismissed if your medical team is not familiar with the ways that hypermobility can present in the gastrointestinal system, cardiovascular/autonomic system, immune system, nervous system, musculoskeletal system, and or even teeth/jaw and pelvic organs.
  • With decreased proprioception and an increased incidence of injury and pain, it can be difficult not to succumb to kinesiophobia (fear of movement/injury) and associated deconditioning, which unfortunately leaves hypermobile joints more vulnerable and poor quality of life.
  • People who are hypermobile may not respond well to treatments designed for those with “normal” connective tissue. For example, if PT/exercise is too aggressive, you may end up with a new injury rather than feeling stronger and more confident in your body. Over years and decades, after trying many treatments that are not designed for your unique makeup, this can contribute to psychological distress in addition to physical distress.
  • When your very intelligent body senses hypermobility, it may overuse that motion in an attempt to take the “path of least resistance.” This allows any stiff areas to stay stiff, and can result in increased hypermobility of more lax areas. Luckily, there is a pro to go with this– carefully applied manual therapy and specific stretching to the stiffer segments, with stabilization exercises for the looser segments can be provided by a skilled PT in order to optimize movement patterns and decrease symptoms.

At this point, you may be thinking that these are extreme cases of Ehlers-Danlos Syndrome that probably don’t apply to you. Perhaps that is the case. But even if you don’t qualify for a diagnosis of EDS, the presence of joint hypermobility has been found to increase the incidence of dysautonomia/nervous system dysfunction, functional gastrointestinal disorders, pelvic and bladder dysfunction, cardiac issues, and psychological distress. Knowing about these associated conditions can help you be proactive about your health and wellness and seek out specialists should the need arise.

Regardless of where you are on the hypermobility spectrum, experts agree that physical therapy is a cornerstone of conservative management. You need a PT that you can count on to help you keep moving so that you can benefit from the many advantages of exercise, some of which will ease the symptoms of hypermobility!

Hopefully, we will see more healthcare professionals familiar with the diagnosis and treatment of hypermobility moving forward. In the meantime, seek out a diverse team that is knowledgeable about hypermobility or at least willing to learn. A physical therapist should be able to recognize/assess hypermobility, but if you think you may have EDS, you will need to find an MD to make this diagnosis.  You may want to start your search at the following sites:

Dysautonomia Support Network

The Ehlers-Danlos Society

Dysautonomia International

Being “more than flexible” can be a lot of work. Your muscles will have to work harder to protect and control your joints, which may contribute to fatigue.  You may need to be stronger to support your hypermobile body, but the right team can help you to proactively build strength and endurance, tenacity of spirit, and resilience in the face of challenges along the way.

Of course, some people are very flexible and have none of the symptoms listed above! But if you are experiencing any of these issues, please consider sharing this blog or its links with your healthcare team as needed to promote awareness, early recognition, and appropriate treatment of hypermobility and connective tissue disorders.

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