Hypermobile Enough?

What is hypermobility? Joint hypermobility means that a person’s joints have a greater range of motion than is expected or normal. People may have joint hypermobility in one, a few, or many of their joints. Joint hypermobility is classified by which joints are affected. 

• Generalized joint hypermobility: joint hypermobility presents in many different joints throughout the body

• Peripheral joint hypermobility: joint hypermobility limited to the hands and feet 

• Localized joint hypermobility: joint hypermobility in a single joint or group of joints in the same area 

Joint hypermobility presents in both Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders.

Hypermobile Ehlers-Danlos syndrome (hEDS) is a heritable connective tissue disorder that causes generalized joint hypermobility, joint instability, and chronic pain. hEDS is also associated with a variety of other symptoms and related conditions that affect many body systems. hEDS is the most common type of EDS, accounting for about 90% of EDS cases. hEDS is currently classified as a rare disorder, and is thought to affect at least 1 in 3,100–5,000 people. However, according to the Ehlers-Danlos Society, the true prevalence of hEDS is not known and may be underestimated.

Hypermobility spectrum disorders (HSD) are connective tissue disorders that cause joint hypermobility, instability, injury, and pain. Other problems, such as fatigue, headaches, gastrointestinal problems, and autonomic dysfunction, are often seen as part of HSD. A spectrum disorder is a condition with wide variation in both the type and severity of symptoms people experience. For example, people with HSD may have mild or severe joint involvement. They may also experience one, two, or many other symptoms, and any of these problems may be mild or severe.

Who can diagnose? Doctors across all disciplines can diagnose hEDS in adults and pediatric joint hypermobility in children. Diagnoses are clinical, based on patient observations, as genetic testing for hEDS isn’t currently available.

What is the difference between hEDS and HSD? It is possible that hEDS and HSD have different underlying causes and that they are truly distinct from each other and from other disorders. It is also possible that hEDS and HSD have a common underlying cause and are not truly separate conditions. There is no way to absolutely differentiate between the two conditions, yet. However, management for both hEDS and HSD are currently the same.

How are hEDS and HSD managed? Both hEDS and HSD are managed by addressing the symptoms a person is experiencing. Because they can cause a variety of symptoms across many body systems, you might need multiple providers in different specialties to manage their care. Key aspects of care include physical therapy and pain management. Everyone with hEDS/HSD is different, so each person should work with their care team to develop a care plan that meets their individual needs. I believe anyone with suspected joint hypermobility should have a care plan with injury prevention. This includes exercise targeted to strengthen muscles throughout their unique ranges of motion, rather than limit their muscular flexibility. Limiting muscle length neither limits pain nor stabilizes loose ligaments. It is my lived experience that my body develops more pain when I limit flexibility training, but that is a different blog post.

Can I exercise with hypermobility? A complex question with a complex answer. Most likely, yes! Reach out to see if you’re a candidate for preventative exercise in my semi-private group classes Joint Primer & From the Ground Up.

Why am I sharing this information? I have a hypermobile body that has presented weird symptoms over the last 39 years. Certain doctors have told me that I am not ‘hypermobile enough’ for a diagnosis, despite scoring 9/9 on the Beighton Scale. Other doctors and physical therapists have strongly suggested I have ‘special’ connective tissue, but believed a geneticist was needed for a diagnosis. It felt like a diagnosis was being avoided out of liability concerns. However, a diagnosis could have prepared me for comorbidity surprises like fast-acting labor and immune system dysfunctions. Social media has taught me that this is a shared experience in doctor-hypermobile patient relationships. In sharing my experience, I aim to raise awareness and help others find treatment that supports their symptoms that extend beyond their hypermobile joints.