It’s amazing to watch a contortionist turn into a human pretzel. But for most of us, hyper-extending joints and overstretching already loose connective tissue can have negative lasting effects.
Joint hypermobility syndrome (JHS), sometimes called benign joint hypermobility syndrome (BHJS) or, more commonly, the state of being “double jointed,” is an inherited condition. Addtionally, it might not be benign if other body systems are affected by a collagen-related disorder called Ehlers-Danlos (pronounced EY-lerz DAN-los) Hypermobility Type (EDS-HT). In fact, some researchers consider BJHS to be a milder form of EDS-HT.
I was born with lax joints, just like my maternal grandmother and my aunt. Well into adulthood, I sat with my legs splayed, or “Indian style,” and as a child my friends made fun of me because of it. Today, osteoarthritis and myofascial pain syndrome cause stiffness that I didn’t experience earlier in life, but my elbows are still crooked and I continue to struggle with the effects of hip, shoulder, elbow, knee, and ankle joint laxity.
Living with JHS is not without consequences. When I was seven months pregnant, I fell down a flight of stairs because of lax hip joints. (JHS can be especially pronounced during pregnancy.) After my son was born, I was referred to an orthopedic doctor who diagnosed me with JHS. I have had 4th-degree sprains of both ankles, four shoulder repairs for torn tendons and muscles, and one shoulder has been reconstructed because of JHS. I experience ileo-tibial band laxity causing unstable hips, piriformis syndrome, and a lot of pain. For years, I have lived with sagging and abnormally thin skin that tears easily, like that of someone on long-term steroids. And I battle chronic Achilles tendonitis. But others diagnosed with JHS could have a vastly different experience than I have, because none of us is affected exactly the same.
It’s also important to keep in mind that not all joints are always affected, and that symptoms of JHS can change with age, i.e., what may seem to be unrelated symptoms can arise over time. This can make the condition difficult to diagnose.
Primary characteristics of joint hypermobility
- Joints move beyond their normal range of motion, and can dislocate.
- Chronic non-inflammatory joint pain and/or spinal pain occur in the absence of injury.
- Skin is easily bruised.
- Muscle, tendon, and connective tissue are weak.
- Poor healing.
- Joint pain associated with exercise.
- May co-occur with other connective tissue disorders.
- May be found in chromosomal and genetic disorders.
- Other characteristics according to the Brighton criteria.
Note that joint hypermobility tends to lessen with age, so a history of symptoms may be necessary to make a diagnosis. Joint stiffness is often related to trigger points knots that form in muscle fiber that develop to stabilize the joint, causing decreased joint mobility and pain.
Pain and joint hypermobility
Joint hypermobility is considered a chronic pain condition when:
- There is pain in four or more joints.
- Pain lasts at least three months.
Note that not all people with JHS have pain.
Other conditions may be present, as well:
- Bursitis, tendonitis, or synovitis due to joint instability and/or injury
- Degenerative diseases of joints and spine
- Early osteoarthritis
- Sprains and/or joint dislocation
- Centralization of pain
- Loss of spatial awareness (the “bull in a china shop” syndrome)
- Myofascial pain syndrome
- Flat feet (potential plantar fasciitis)
- Neuromuscular weakness affecting the bladder wall, sphincter muscles, or chronic pelvic pain disorders
- Autonomic dysfunction (i.e., orthostatic intolerance)
- Chronic fatigue syndrome (ME/CFS)
- Overload of the sympathetic nervous system (i.e. Raynaud’s, and/or anxiety)
- Complex Regional Pain Syndrome
- Gastrointestinal disorders (i.e. IBS, GERD, or gastroporesis)
- Neuropathic pain
- Visual and other eye problems
- Dental crowding
- Weak or floppy blood vessels
- Mitral valve prolapsed
Treatment options for JHS generally depend on how it affects your quality of life.
Things we can do:
- Modify our activity to minimize joint stress.
- Treat trigger points.
- Strengthen supporting muscles. (See below.*)
- Be aware of impact on joints, i.e., shoe styles, heavy purses, backpacks, etc.
- Use good body mechanics when lifting or turning.
*Therapeutic interventions, such as bodywork and physical rehabilitation, should be supervised by someone specially trained in treating myofascial and connective tissue disorders, and a firm understanding of JHS.
Joint hypermobility syndrome can vary from a mild annoyance to significant body system involvement. Please consult with your doctor for the right evaluation and treatment.
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_Celeste Cooper, RN, is a chronic pain patient, freelance writer, and contributor to the Health Central Community. She is also lead author of five published self-help books and enjoys writing and advocating for people living with chronic pain as a participant in a local patient leadership group and the PAINS Project. You can learn more about Celeste’s writing, advocacy work, helpful tips, and social network connections at CelesteCooper.com. _
Celeste Cooper, R.N., is a freelance writer focusing on chronic pain and fibromyalgia. She is lead author of Integrative therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain and the Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain book series. She enjoys her family, writing and advocating, photography, and nature. Connect with Celeste through her website CelesteCooper.com, Twitter @FibroCFSWarrior, or follow her Facebook page.