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By Mary Carpenter
Mary is updating her 2016 post on hypermobility because she found out about a recently opened (2019) D.C.-area clinic, which specializes in connective tissue disorders that underlie hypermobility – it currently has an 18-month waiting list because there are so few physicians and clinicians treating these conditions.
POTS (postural orthostatic tachycardia syndrome)—lightheadedness, fainting and rapid heartbeat that happen when standing up—is one of many medical issues that can be linked to the connective tissue weaknesses underlying hypermobility. Connective tissues, which form fat, bone and cartilage, do not just hold ligaments and joints but also support nerves, immune and circulatory systems and other organs.
As a result, connective tissue weakness can lead to an overactive immune system—causing unexplained allergic reactions, such as swelling and difficulty breathing —as well as osteoarthritis, unexplained bruises and abnormal scarring, and constant thirst. More serious problems include diverticulitis, uterine prolapse and mitral valve disease that can lead to congestive heart failure.
Connective tissue knits the body together, explains Alissa Zingman, founder of the P.R.I.S.M. clinic in Silver Spring, Maryland, who spent years seeking help for her own pain and frequently dislocated joints before she found doctors who took her complaints seriously and diagnosed ED (Ehlers-Danlos Syndrome). P.R.I.S.M. assesses and treats patients whose symptoms suggest underlying connective tissue weakness.
Some rheumatologists screen earlier for osteoporosis in hypermobile patients—although the arthritis pain common in this group can make it difficult to detect hypermobile joints. But most physicians rarely consider that hypermobility might be a complicating factor when treating related conditions— from chronic allergic reactions to severe diverticulitis.
It’s a long wait to get an appointment with P.R.I.S.M. but identifying your hypermobility is important so you can do exercises that are good for you and avoid high-risk activities like hot yoga and too much stretching.
Back to our 2016 post:
EVER FEEL like Gumby? Do double-jointed tricks with your thumbs, remember dropping into splits easily in your youth? But have such difficulty standing for long periods that an hour at a museum is more tiring than one spent climbing Maryland’s Billy Goat Trail – and standing on one leg is nearly impossible? Also, tired and achy? Have cold hands and feet?
“Emerging awareness” is how local Certified Advanced Rolfer™ and movement therapist Rebecca Carli-Mills describes the current thinking about hypermobility—as descriptions and classifications change with new research. People with lax joints fall along a broad spectrum, from those with hypermobility but only mild or no related symptoms —to those more severely affected, some of whom are diagnosed with Ehlers-Danlos Syndrome.
Loose joints create strain on the soft connective tissues designed to stabilize joints, which makes the connective tissue both too lax for stabilizing and more vulnerable to tearing and pain – resulting in joint hypermobility syndrome (JHS). While JHS most commonly causes excessive flexibility, hypermobile people can also feel stiffness, tension and pain in the joints.
“Remarkably, this process [of tissue damage related to hypermobility] occurs so gradually that many people with JHS do not even notice…when in fact their necks are a mass of knotted soft tissue,” writes Alan Pocinki, hypermobility expert at George Washington Hospital. JHS affects three times as many women as men, occurs in as much as 10% of the population, and tends to diminish with age.
With reduced awareness of the location of their bodies in space, called proprioception, “hypermobile people frequently bang into things and may have been told they were clumsy or awkward—a klutz,” notes Carli-Mills.
Identifying joints as loose or hypermobile is crucial when choosing good exercises and activities—and avoiding those that can make problems worse. Isometric, or resistance, exercises keep the joints stable while working the muscles. Before any movement, engage the body’s stability. According to Pocinki, the worst exercises for hypermobile joints are free-flow stretching like ballet or gymnastics—anything that involves grabbing a joint and pulling or pushing to “loosen it up.”
Pilates exercises can help strengthen the core to decrease the load on susceptible joints: an example is the “bird-dog” pose — on all fours, stretch one arm out in front and the opposite leg in back, like a dog pointing toward its prey. The best exercises involve weight lifting and tension bands, increasing repetitions while maintaining low weight or resistance. According to Pocinki, if you can’t do eight repetitions without straining, the weight is too heavy.
Fatigue and pain are the most common symptoms that accompany hypermobility—caused by poor posture, ineffective movements and “improper muscle recruitment” when performing simple tasks, according to a hypermobility blog. And Pocinki explains that almost every JHS patient has chronic neck strain because the neck ligaments are too loose to support the neck, which forces the neck muscles to work harder.
To assess a person’s degree of hypermobility, the Beighton score uses movements, such as bending your little finger backwards; bending your thumb forward to touch your forearm; hyperextending your elbows and/or knees; and putting your palms flat on the floor without bending your knees. For a diagnosis of JHS, that score is combined with other criteria, many related to pain—such as the number of joints affected, the duration of pain, back pain and soft-tissue problems such as tendonitis.
Increasing muscle tone and stability can be a slow process, says Carli-Mills, but “people improve more quickly if they give up things that are bad for them, like running and stretchy hot yoga. And she advises, “Bring more mindfulness to movement and action to activate the nervous system in a different way.”
I appreciate the growing recognition of hypermobility, having done double-jointed tricks since childhood. And I’m grateful for the specific advice —such as that from the British Hypermobility Syndromes Association: Stay in any one position for a maximum of half an hour. On the other hand, because hypermobility affects so many body parts and joints and calls for doing so many things to counter related problems, it can feel like fighting against the inevitable—and sometimes I yearn to just slouch in a chair and read.
—Mary Carpenter regularly reports on topical issues in health and medicine.