By Dr. Susannah Parke, DO and Dr. Amanda Hallberg, MD
Persistent daily pain is a diagnosis that has unfortunately increased over the past decade in this country. Sometimes the source is known, but oftentimes, the etiology remains a mystery. As physicians, we wondered why some patients skate through life with very little pain and why others find themselves reaching for the Advil every day.
The term “joint hypermobility” kept coming up in medical discussions with colleagues and at regenerative medicine conferences. Initially, it was deemed a rare, genetic connective tissue disease that was characterized by loose or weak ligaments. However, the prevalence of this issue is increasing, and recent evidence supports that various environmental toxins are causing inflammation and impairing the strength of the connective tissues even more. When we started to examine our patients’ joints, we found a plethora of hyperextended knees, double-jointed fingers, and collapsed foot arches. None of these exam findings were new to us, but now we knew the reason why some patient’s joints acted differently. It was a revelation to finally understand why so many patients with pain were not improving with traditional interventions.
You may have heard of Ehlers Danlos Syndrome (EDS). Ehlers-Danlos Syndrome is a group of inherited genetic disorders that are characterized by weaker connective tissues from a collagen defect, primarily affecting skin, joints, and blood vessels, but also internal organs. The altered collagen results in hypermobility: stretchy skin, fragile tissues, easy bruising, and more. One of the subtypes, hEDS (hypermobile type-EDS) is the most common. Providers use the Beighton score or a scoring available at The Ehlers Danlos Society (ehlers-danlos.com) to assess the hypermobility of select joints. Whether a patient meets the full criteria of Hypermobility Spectrum Disorder (HSD) or not, a person can benefit from additional measures to avoid loss of function and improve quality of life.
Some patients with hypermobility may be diagnosed as young as eight years old. They might have scoliosis, very flat feet, and crowded teeth. But most patients trickle into the office later in life because of years of unrelenting, mysterious pain. Most have seen other providers without finding relief or have been told it is stress or a non-physical cause. We commonly hear a patient say, “My head feels like one of those bobble-head toys—it feels like it’s going to fall off!” The ligaments holding the cervical vertebrae together are like overstretched rubber bands. The muscles of the neck and shoulders have to work harder to keep the neck upright—and that hurts. One of the most common demographics we see are middle-aged women. They may be juggling work and childcare, their hormones are changing, and their body can no longer compensate under the physical and mental stress. The body starts sending warning signals—specifically pain signals. Pain is our body’s way of communicating the need to slow down and check in.
Men can also get hypermobility but are somewhat protected by the added strength their hormones provide. Men can get scoliosis or require orthoses in their shoes. One student had so much pain in his fingers, he needed to take time off from college. And just like women, they have been referred to physical therapy more times than they can recall.
When we move a body part, all the players involved (bones, tendons, ligaments, and fascia) have to move in a coordinated fashion. In a body with “normal” joint mechanics, a joint stays in a specific range of motion to stay safe, and if it is forced beyond this range of motion, there is an injury. When joints have more laxity, it takes less outside force for an injury to result because there is less stability and communication within the joint. The cartilage protecting bony surfaces gets damaged, ligaments and tendons may be torn, nerves become irritated and then muscles overwork to attempt to keep the system intact.
Why is it important that clinicians recognize who is on the hypermobile spectrum? Simply, it helps a practitioner direct patients to better care. There are a few reasons why it is taking the medical community so long to catch up with the research. First, connective tissue disorders were only covered briefly in medical schools, and only the most severe conditions like Marfan’s Syndrome, seemed to matter. Consequently, patients with vague, widespread pain often receive a diagnosis of overuse syndrome, fibromyalgia, or “stress-induced” pain from their doctor. However, the difference is that EDS/HSD results from an actual collagen defect.
Also, joint hypermobility is very hard to detect on imaging. We can’t see loose ligaments on x-rays or cat scans, and even MRIs are only minimally helpful. Floppy ligaments are challenging to detect on examination, but patients can certainly feel when their limbs refuse to stay resting in their sockets. To complicate the picture, someone with EDS or HSD can have other vague symptoms that don’t appear to be related—dizziness when standing, stomach discomfort, unexplained hives, brain fog, debilitating fatigue. Turns out, hypermobility is connected to a slew of other issues that affect the immune and autonomic nervous systems, but the symptoms are so disparate, that patients hop from specialist to specialist without determining the underlying cause. Some of these other medical conditions that can show up alongside hypermobility disorders are mast cell activation syndrome (MCAS), postural orthostatic tachycardia syndrome (POTS) and dysautonomia, stomach/digestion problems, autoimmunity, Lipidema, ADHD/ASD, even dental problems. And then add in post-covid syndrome or mold exposure and these symptoms escalate. Patients often struggle to find specialists to address each issue, which just adds to their fatigue.
Luckily, the number of resources for people with hypermobility has sky-rocketed over the past decade: The Bendy Bodies podcast with Dr Linda Bluestein, The EDS Society website, The Zebra App, an app with EDS-friendly exercises, and there are more physicians who are familiar with hypermobility disorders now.Next time you go to physical therapy, pilates, or personal training, first ask, who works with hypermobile patients the most? A PT who understands will keep you safe from injury and not ask too much of your body. The rehabilitation approach to a hypermobile shoulder should not be the same as the approach to a “normal” shoulder. So many people with hypermobility learned to manage on their own by guarding the areas of instability and pushing through the pain, but that approach is unsustainable. And as practitioners, we need to remember that all pain is worth investigating, even though we may not recognize the signs and symptoms. We also need to remind patients to pace themselves, especially the ones with hypermobility and other chronic conditions. The adage, less is more, is especially relevant to the hypermobile body. Your body has a profound intelligence—it will tell you what it needs if you listen.
Dr. Susannah Parke, DO and Dr. Amanda Hallberg, MD are two local integrative physicians who wish to increase awareness of different medical conditions and topics to benefit our community. Amanda Hallberg MD is a Family and Integrative Medicine Physician practicing in Ann Arbor for 21 years. Susannah Parke DO practices Integrative Pain Medicine and has been at her Ann Arbor private practice for a decade. She is double boarded in Physical Medicine and Rehabilitation and Osteopathic Manipulative Medicine. Additionally, she is certified as a yoga teacher and personal trainer. For more information on
Dr. Parke’s practice, please visit her website at susannahparkedo.com or give her office a call at (734) 984-3612.
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