Taking an Interest in Joint Hypermobility
STEVEN SANDBERG-LEWIS
ND, DHANP
Collagen protein in its various forms makes up the bulk of the human physical structure. This includes hair, bone, skin, tendons, ligaments, fascia, blood vessels and major organs.
There are hundreds of genetic disorders associated with many different types of collagen, including Marfans, Alport Syndrome, Chondrodysplasias and Ehlers-Danlos. These collagen syndromes have garnered the attention of many specialists, most notably those working in cardiology and joint health. In the digestive medical specialty, the exceedingly rare Ehlers-Danlos syndromes have major significance, but this is also true of the more common joint hypermobility form of Ehlers-Danlos syndrome (hEDS). Ehlers-Danlos Syndrome has multiple effects on digestive anatomy and physiology, occurring in approximately 1-2% of the US population. These people will often be more prone to sprains, strains, dislocations, excessive stretch marks (striae) and scarring (keloid formation).
The screening exam for hEDS begins with the Beighton score – an easy 3 minute joint flexibility test. I complete a Beighton score on every new patient. A positive score is 5 or more hypermobile joints for those ages 10-59, and 4 or more for those over age 60. To open the discussion with adults, I may ask about a history of being able to perform “the splits” or other “double-jointed” activities when younger.
The digestive issues that are more common in hEDS include hiatal hernia and inguinal hernia; gastric, small bowel, colonic or rectal prolapse; intussusception, and muscular weakness of the lower esophageal sphincter (LES)and ileocecal valve. Digestive symptoms commonly associated with hEDS include difficulty swallowing food, gastro-esophageal reflux, indigestion, celiac disease, irritable bowel syndrome, recurrent abdominal pain and either constipation or diarrhea.
hEDS may also have psychological manifestations. Examples of these emotional states include depression, anxiety, low self-confidence, hopelessness and negative thoughts. A recent paper points to a possible connection between Attention Deficit Hyperactivity Disorder (ADHD) and hEDS. In those suffering from hEDS, sleep quality is frequently poor, leading to fatigue. Additionally, women with hEDS are much more prone to balance issues and falls.
Most physicians neglect to screen for hypermobility syndrome, and therefore, are unaware that some of their patients have it. Patients may feel misunderstood, marginalized, and that their real concerns are not taken seriously by the healthcare practitioners.
When I know that a patient has hEDS, it affects my management and treatment of their medical care in several ways:
I will screen them for hiatal hernia and hiatal hernia syndrome and ileocecal valve syndrome. It tempers my expectations for results of treatment since hEDS presents key structural changes (“floppy” collagen). This not only creates instability of joints but also laxity of GI sphincters, the abdominal omentum and GI ligaments which often creates a life-long tendency for GI issues. I will pay special attention to abdominal x-ray, CT or MRI reports to check for prolapse and tortuosity of the intestines.
Imaging results will inform my recommendations for any bodywork that I perform, as well as any bodywork performed by other practitioners the patient may visit. Myofascial work should involve less force and shorter duration. Musculoskeletal techniques that preserve and enhance stability of joints, such as prolotherapy, platelet-rich plasma (PRP) injections and toning exercises should be first choices. Any spinal manipulation using grade 5 force should generally be reserved for rare situations.
Knowledge that a patient has hEDS will remind me to include nutritional treatments that have the potential to support collagen. These include vitamin C, bone broth, collagen extracts, and methylsulfonylmethane, although formal nutrition research about these is speculative.
Along with my colleagues, I suspect that the lack of joint integrity in the cervical spine becomes a strong risk factor for traumatic brain injury (TBI). Perhaps even the slightest whiplash (shaking the brain) may become a source of significant change in brain function, which will need to be addressed in order to optimize digestive as well as emotional and general health.
The practitioners at Hive Mind Medicine have extensive experience in treating many of the symptoms discussed above. If you are experiencing symptoms that you would like to discuss, please contact us to set up an appointment.
Steven Sandberg-Lewis, ND, has been in clinical practice for 43 years, with a focus on functional gastroenterology. He has been a professor since 1985, teaching a variety of courses but primarily focusing on gastroenterology and GI physical medicine. In 2019, Dr. Sandberg-Lewis co-founded Hive Mind Medicine, continuing his specialization in gastroenterology with a focus on reflux, SIBO, inflammatory bowel disease and functional GI disorders. He is currently working on his new book, Getting Real About Reflux, written to help non-medical and medical professionals alike develop a better understanding of diseases affecting the gastrointestinal tract.
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