Hypermobility Spectrum Disorder

Hypermobility Spectrum Disorder – a primer for hands-on professionals

Traditionally, hypermobility was viewed by many professionals in medicine, physical therapy and other fields as excessive range of motion in the entire body. Oftentimes, if one could bend forward from the waist and touch their palms to the floor, have their straight leg raised past 90 degrees, or hyperextend their elbows and/or knees, they were generally labeled or diagnosed as ‘hypermobile’.

In 2017, the Ehlers-Danlos Society redefined the very general term hypermobility and replaced other terms like hypermobility syndrome with a new one called Hypermobility Spectrum Disorder (or HSD) (1). Of the people diagnosed with one of the 13 rare genetic variants of Ehlers-Danlos Syndrome (or EDS), most have some form of joint hypermobility, especially the 90% who suffer from joint instability and chronic pain. However, while most people with EDS also have HSD, not all people diagnosed with HSD have EDS.

(Fig.1 Permission©2023 Ehlers-Danlos Society)

As can be seen from Figure 1 above, HSD is not a simple linear categorization from mild to severe signs and symptoms. Rather, it is truly a spectrum encompassing a broad range of presentations that must be recognized and understood before a personalized treatment plan can be successfully implemented.

Since HSD is complex, this primer will focus on basic evaluations, assessments and exercises that will be easy to implement for better outcomes.

Beighton Scoring System

The Beighton Scoring System is promoted on the EDS website as one method to evaluate and assess clients and patients’ skeletal joints primarily and to a lesser degree the surrounding connective tissues or fasciae (1).

(Fig. 2 Permission©2023 Ehlers-Danlos Society)

Briefly, one point is given for each of the joints (see Figure 2) that show hypermobility in a physical exam, which totals 9 points for all joints. Any score greater than or equal to 5/9 points in adults, 6/9 points in children (before puberty), and 4/9 points in adults over age 50 is a positive Beighton score.

Experienced clinicians will recognize that the above tests are insufficient to get a complete sense of the objective nature of an individual’s somatotype, as well as how they function. One method I have devised to further evaluate and even reeducate a person, is to assess their proprioception after completing the Beighton scoring. There are 2 main ways I do this:

1) With their eyes closed, have the person move their body part very slowly until they sense the very first slight feeling of any resistance. Even though they could push the joint range of motion (ROM) further, you want to see if they sense it, or go right past it to the end range or anatomical limit. Compare that range with you performing passive ROM on the same joint to see if they did or did not stop at the same point as you did. This will give you a good idea of the client’s kinesthetic abilities and deficits that may need training and reeducation.

2) With their eyes closed, have the person hold their knee and then their elbow in a straight position. Most often, they will hyperextend the joint and think that is the straight position. When you have them stand in front of a mirror and look at their joint as you explain what ‘straight’ is, they will feel that their joint is bent or flexed. This will be a lasting impression on the person and the exercise of using their muscles and fascia to find that proper position by engaging the optimal control of the joint will greatly reduce pain while dynamically stabilizing their joints.

In addition to training self-awareness and proprioception, using manual techniques of joint compression, myofascial shortening along with omnidirectional stretching of relative hypomobility regions will improve function while reducing pain, resulting in a better quality of life for your clients and patients. There are many creative methods clinicians, therapists and educators can use to help patients and clients with HSD (and even EDS) that will be covered in future articles and podcasts.

Meantime, finding a capable practitioner specializing in the medical care of clients and patients needing more than you offer for complete care is necessary. Consider listening to my interview of just such an amazing functional medicine practitioner that leaves no stone unturned in his quest to optimize health patients with HSD, EDS, POTS and many more conditions that have hypermobility as a common thread with all of them: https://youtu.be/YmY7lsIh9I4

Chris Frederick, PT

References:

1. The Ehlers-Danlos Society: https://www.ehlers-danlos.com
2. https://www.hyp-access.com: Hyp-ACCESS develops multi-field care access for common & neglected Hypermobile conditions & disabilities from a foundation of People’s Science & Disability Justice.
3. Gil Hedley interviews (members link): S3 E1: Understanding Hypermobility, with Audre Wirtanen and L Tuthall: https://www.gilhedley.com/products/live-with-gil/categories/2151906633/posts/2163904497.
4. Aaron Hartman, MD interview: https://youtu.be/YmY7lsIh9I4
5. Stretch to Win Institute Homepage: https://www.stretchtowin.com