As someone who spent a decade performing yoga poses, most people would take one look at my photos and covet my flexibility. I could fold my body into beautiful, aesthetically pleasing shapes. But what wasn’t evident, hidden behind the impressive photos, was the chronic pain that had slowly, then suddenly, taken over my life.
The more I loosened, the more “advanced” my yoga practice became, the more I unraveled—the more chronic pain I experienced. It began with my neck and shoulders accompanied by severe headaches and nerve pain down both arms, then my lower back followed by hip pain and associated neuropathy and sciatic nerve pain. I spent years seeing specialists, including orthopedics, rheumatologists, endocrinologists and neurologists, only to be repeatedly told there was nothing “wrong with me.” I would have given anything to receive a diagnosis. However, my MRIs weren’t terrible and I didn’t have an autoimmune disease, everything appeared to be normal, but I was in pain, constantly.
It wasn’t until I was forced to stop practicing yoga poses and step away from teaching yoga that I became aware of hypermobility-related conditions, such as hypermobile Ehlers-Danlos syndrome (hEDS) and other hypermobility spectrum disorders (HSDs). Once I started diving into the research, I was both shocked and relieved to realize that almost all the conditions I saw doctors for since childhood, including TMJ, anxiety, indigestion, vulvodynia, psoriasis and so on, were associated with having a connective tissue disorder characterized by joint hypermobility.
Hypermobility is a term used to describe joints that are capable of moving beyond their normal limits. Experts believe that 10 to 25 percent of the general population have some degree of joint hypermobility, which can be advantageous, especially for competitive athletes and particularly dancers, gymnasts and yogis. The downside, however, is that while most people with hypermobility don’t develop any problems, a small percentage suffer from chronic pain and other symptoms related to their loose joints and connective tissue.
Along with symptoms, the amount, severity and site location of joint hypermobility can vary greatly from person to person. Having one or two hypermobile joints is fairly common and defined as localized joint hypermobility. Those of us with five or more hypermobile joints are described as having generalized joint hypermobility, which is more likely something we were born with and often inherited but also can be acquired.
Then there’s peripheral joint hypermobility, which is more common in children and only affects the hands and feet, as well as historical joint hypermobility, which classifies adults who have progressively lost their hypermobility as they aged.
The Beighton scoring system is a simple nine-point scale widely used to measure a person’s degree of hypermobility. One point is given for the ability to perform each of the following tests below; the higher the score, the more indicative of widespread hypermobility. A Beighton score of five or higher classifies as generalized joint hypermobility.
- Able to bend small finger back beyond 90 degrees (one point each side)
- Able to bend thumb back to touch inner forearm (one point each side)
- Able to extend elbow 10 degrees beyond normal (one point each side)
- Able to extend locked knee 10 degrees beyond normal (one point each side)
- Able to place hands flat on the floor with straight legs (one point)
Symptoms and conditions related to hypermobility
While it’s very possible (and likely) to have joint hypermobility without it ever becoming an issue, people with hypermobility may experience some of the following symptoms and common conditions related to loose joints and connective tissue:
- Joint subluxations and/or dislocations
- Chronic neck, shoulder, lower back, hip or other joint pain
- Disturbed proprioception
- TMJ dysfunction
- Spine issues
- Neuropathy (nerve pain)
- Easy bruising
- Poor wound healing
- Pelvic and bladder dysfunction
- Raynaud’s disease (or poor circulation)
- Chronic fatigue
- Gastrointestinal issues
- Anxiety disorders
- Sensory processing issues
- And much more
Spectrum of joint hypermobility
As recently as 2017, medical experts and researchers with The Ehlers-Danlos Society outlined a framework for the classification of joint hypermobility and related conditions (many of which are overlapping), introducing a continuous spectrum ranging from asymptomatic joint hypermobility to hypermobile Ehlers-Danlos syndrome—a specific inherited connective tissue disorder having multi-system implications. Along that continuum falls a new diagnostic category known as hypermobility spectrum disorders meant to serve as alternative labels for those with symptomatic joint hypermobility yet don’t meet the stricter criteria for hEDS as outlined by The Ehlers-Danlos Society.
Criteria for a clinical diagnosis of hEDS and/or joint hypermobility syndrome include having a combination of a generalized joint hypermobility (Beighton score of five or higher), musculoskeletal complications, multiple systemic manifestations of a more generalized connective tissue disorder, and family history.
Those with joint hypermobility—whether generalized, localized, peripheral or historical—accompanied by symptoms associated with loose joints and connective tissue but don’t check all the boxes for hEDS are considered to have a hypermobility spectrum disorder. However, as stressed by The Ehlers-Danlos Society, one is not better or worse than the other. Both HSD and hEDS can have significant effects on a person’s health and well-being. And while a doctor can help determine whether a person has HSD or hEDS, both can be equal in severity, requiring similar validation, management and care.
Diagnosis and treatment
That being said, receiving a professional diagnosis can prove to be difficult. HSD/hEDS are considered zebra conditions because they are rare illnesses that often go underdiagnosed or misdiagnosed. Like me, people with hEDS/HSDs often spend years unsuccessfully searching for the cause of their chronic pain and other conditions, and because we look normal and healthy, we are often not believed. The emotional and psychological effects can be equally as devastating as the chronic pain.
The hopeful news is that more and more doctors and health-care professionals (including physical, occupational and massage therapists) are becoming aware of and beginning to understand the possibly devastating implications of hypermobility spectrum disorders.
Having had to be our own health advocates for years on end, the psycho-emotional relief of receiving a diagnosis, realizing all your symptoms are related and that there are more people like you is absolutely everything to a person suffering from hypermobility-related conditions like hEDS or HSD. And while there isn’t a cure (yet), there are supportive treatments to help manage and relieve some of the symptoms, as well as preventative measures a person can take to avoid excessive injury and strain.
In general, highly customized physical therapy is crucial for those with hypermobility-related conditions. Other treatments include nutritional therapy, movement, bodywork, pain-management medication, mental health care, mind/body therapies and lifestyle changes. Limits on activities, such as high-impact exercises and heavy lifting, vary per individual, while most people with HSD/hEDS should avoid stretching, which has the potential to worsen the condition.
If you relate to this article and think you may have a hypermobility-related condition, speak to your doctor. Once other conditions and complications have been ruled out, together you can devise a treatment plan for managing your joint hypermobility and accompanying symptoms as they are presented. Resources and more information can be found on The Ehler’s-Danlos Society’s site here.
Self-care for people with HSD
First and foremost, it’s important for people who fall on the spectrum of hypermobility disorders to have a balanced diet, get proper sleep and exercise appropriately—improving joint and muscle strength, and reducing the risk of strain.
What’s “appropriate” might seem counterintuitive to hypermobile bodies. People with hypermobility disorders have sensory proprioceptive issues, meaning that the nervous system (which controls movement) doesn’t indicate when your joints have moved beyond their healthy limits. In addition, hypermobile people don’t feel as much as normal bodies, because along with sensory proprioceptive feedback issues comes desensitization. That means hypermobile people have to go to extreme ranges of motion to feel a stretch.
However, extreme stretching prompts the body to create stability in joints that are too loose by excessively tightening and gripping large muscle groups. So although stretching those muscles feels good or even necessary, for hypermobile bodies, the relief is only temporary and further stretching only causes more strain. It’s valuable to work with a knowledgeable physiotherapist, who may help improve muscle strength and joint stability, as well as posture, proprioception (the ability to sense where your joints are in space) and balance.
In general, people with generalized hypermobility should try to:
- Avoid excessive stretching
- Avoid overextending joints just because it’s possible
- Avoid sitting cross-legged
- Avoid “hanging out” on their joints
- Improve their postural awareness
- Do light resistance training to improve strength and stability
- Stay active with low-impact exercises like walking and swimming
- Pace their movement, balancing more active periods with periods of rest
Photo credit: Amax Photo, Getty Images