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I was on a business-related Facebook forum recently, and the owner of the forum posted about her latest in a string of many illnesses and injuries. Having seen her in videos and photographs, I knew instantly that she was hypermobile. But the question was “does she have a hypermobility spectrum disorder?“
The discussion that followed made a few people with hypermobility come out of the woodwork, that’s for sure. But it also highlighted very clearly, something which I already knew from my years of practice, but which is not known by everyone. You can be hypermobile without having a hypermobility spectrum disorder.
What does that mean exactly? It means you can simply have ‘bendy’ or hypermobile joints; you might even score 9/9 on the Beighton Scale, but that alone is not enough to classify you as having a hypermobility disorder/condition. To be diagnosed with a hypermobility spectrum disorder, you have to meet certain criteria, which are outlined below:
Joint hypermobility ranges from asymptomatic JH and GJH through to hEDS as part of the EDS.Along that continuum fall the following.Generalized (joint) HSD (G-HSD):GJH objectively assessed (e.g., by the Beighton score) plus one or more secondary musculoskeletal manifestations identified below. The pattern and severity of the musculoskeletal involvement should be carefully assessed in order to explore the possibility full-blown hEDS. Peripheral (joint) HSD (P-HSD): JH limited to hands and feet plus one or more secondary musculoskeletal manifestations. Localized (joint) HSD (L-HSD): JH at single joints or group of joints plus one or more secondary musculoskeletal manifestations regionally related to the hypermobile joint(s).Historical (joint) HSD (H-HSD): self-reported (historical) GJH with negative Beighton score plus one or more secondary musculoskeletal manifestations. Physical examination aimed at excluding the alternative diagnoses of G-HSD, P-HSD, and L-HSD, as well as other rheumatologic conditions, is mandatory.
You have to have one or more of these:Secondary Musculoskeletal Manifestations
Joint hypermobility can be symptomless apart from the unusual mobility, but there is a series of other symptoms that result from that mobility. These should be evaluated for a diagnosis of HSD (and treated, of course). (JH = joint hypermobility) Trauma “The hypermobile joint may be predisposed to an excess of macro- and microtrauma. Macrotrauma (i.e., dislocations, subluxations, and other soft-tissue injuries–that is, any form of damage of muscles, ligaments, tendons, synovium, and cartilage) is most likely the result of isolated or recurrent trauma due to excessive joint movement along non-physiological axes, potentially compounded by joint instability. Macrotrauma typically leads to acute pain, loss of function, and often the need for acute treatment. Microtrauma is subtle/silent injury typically not perceived by the individual or practitioner as it occurs. However, over time it might predispose to recurrent or persistent pain and potentially, to early joint degeneration (i.e., early osteoarthritis). While JH is largely accepted as predisposing to recurrent musculoskeletal pain, neither chronic pain nor early osteoarthritis is a uniform obligate complication of JH.” (In other words, you won’t absolutely have or get chronic pain or osteoarthritis). Chronic PainOccasional and recurrent musculoskeletal pain is a quite common immediate manifestation of JH as the natural consequence of predisposition to trauma. The development of chronic pain is sometimes a long-term complication of JH.Preliminary studies suggest the existence of hyperalgesia as a possible form of pain sensitization in patients with EDS and chronic pain. The recent observation of a high rate of small fiber neuropathy in adults with common EDS subtypes (i.e., classical, hypermobile, and vascular) may lead one to speculate on a direct relationship between an impaired connective tissue function and abnormal pain processing. An alternative or complementary hypothesis is the existence of a common pathogenesis shared by other forms of chronic musculoskeletal pain (e.g., acquired connective tissue disorders and idiopathic osteoarthritis), that may develop in a way independent from the discrete causes of the primary joint disease.Disturbed Proprioception Proprioception, that is, knowing where our joints are in space, can be reduced. This can lead to problems with all activities of daily living. (Poor proprioception is often the reason we bump into things and are considered “uncoordinated” or “clumsy”). Other Musculoskeletal Traits Individuals with GJH often present a series of minor musculoskeletal physical traits, which may be the result of the interactions between “softer” musculoskeletal tissues and mechanical forces (e.g., recumbent preferred position, body weight, gravity, lateralization, sport activities) during growth and development. Such traits, commonly encountered in individuals with GJH include: pes planus (of the “flexible” type), valgus deformity of elbows, hind-feet and halluces, mild to moderate scoliosis, accentuated dorsal kyphosis (hunch back) and lumbar lordosis (sway back), and deformational plagiocephaly (misshapen head-shape).
So, it is feasible that someone could score 9/9 (often these are dancers, gymnasts, musicians) and have no other symptomatology. Purely having hypermobile joints, makes you hypermobile, but doesn’t give you a hypermobility spectrum disorder (or one of the other genetic causes of hypermobility).
I know that lots of people who are hypermobile often want to help others get a correct diagnosis because they went through such a terrible experience themselves. However, just a word of warning..
Not everyone that looks like a zebra will be a zebra. There are lots of reasons why people have hypermobile joints, and having a hypermobility spectrum or connective tissue disorder is only one of them.
I have lost count the number of times someone has responded to me with “Oh, I’m hypermobile too” when I have disclosed that I have significant joint hypermobility causing dislocations. They usually then proceed to show me one joint that is a bit unstable. I’m sure you’ve experienced it too!
I try to use that as an education point, when it’s appropriate and note that I also get severe pain and a whole bunch of other symptoms because I have a “syndrome”. I’m not trying to do the old “I’m worse off than you”, not in the slightest (it’s not a competition after all), but more just to help educate the wider community of the variations in severity of hypermobility.
Have you got a great way to explain your hypermobility-related syndrome? Share it with us!
Michelle is a Senior Occupational Therapist working solely with adults with hypermobility and related conditions. Michelle is the owner of Hypermobility Connect, an online platform for people with hypermobility to connect with resources, health professionals & each other. Michelle practices OT in her private practice and provides education to health professionals relating to hypermobility conditions.