Hypermobile-Type, Ehlers-Danlos Syndrome

Hypermobile-type, Ehlers-Danlos Syndrome

Hypermobile-type, Ehlers-Danlos Syndrome (hEDS) is one of 13 subtypes, and is not rare. Connelly et al. report that thirty percent of the population is hypermobile and a large portion of this group is noted to have “systemic effects secondary to connective tissue fragility.” Look at all of the best athletes; pitchers, gymnasts, swimmers, runners tend to be hypermobile. hEDS is passed down from your parents. They may not know they were hypermobile, but you may think back and note certain behaviors that tend towards hypermobility. Your parents may have also had early arthritis or many injuries. Men tend to be less hypermobile than women because of many various factors. There is no genetic test for hEDS. However, you may consider ordering a 23andme genetic test to check for other variants.

We may or may not send you to a geneticist based on what we learn about you at your initial visits. There is a trend towards thinking hEDS is secondary to the glue that holds collagen together and maybe not so much the collagen itself. We tend to believe that trend considering what we see when we evaluate connective tissue with ultrasound during your appointment. Hypermobility does involve the ability to not only stretch well, but joint dislocation and subluxation (partial dislocation) are also common. People with hypermobiltiy often have labral tears in the shoulders and hips, as well as knee caps that often move out of place. For treatment, we have noted significant success with the RIGHT kind of physical therapy. Many physical therapy treatments in the past may have hurt you because treatments were based on strengthening and stretching. Instead, Pilates-based exercises focusing on tone and endurance are key. We work with therapists that are experts in treating patients with hypermobility and EDS.

Dr. Jacques Courseault is an expert in ultrasound-guided hydrodissections. With ultrasound he can see the fibrotic areas in muscles or the chronically injured areas and treat them. One of the best treatments for hypermobility-related connective tissue injury is dextrose prolotherapy. This involves one injection per month, for a minimum of 4 treatments, of dextrose (a sugar), which promotes a healing cascade that can help heal tissue. When performed under ultrasound, we also may do a fascial hydrodissection to help break up adhesions in muscle. Dextrose prolotherapy is used for headaches, TMJ, neck pain, upper back pain, shoulder pain, elbow pain, nerve pain, low back pain, SI joint problems, knee instability, hip pain, knee pain, muscle pain and foot pain.  Unfortunately, prolotherapy is not covered by insurance and you must pay out of pocket. Because fees may change, call the clinic for the latest charges. If prolotherapy is not an option financially, cortisone and local anesthetics are typically used, which can be effective. However, many patients with hEDS tend to have negative effects from cortisone injections more so than the general population.

Wearing stability or motion-controlled shoes and compression garments are the quickest and easiest changes you can make to improve hypermobility pain-related symptoms. Stabilizing the feet and ankles leads to better stability of the knees, hips, and 2 back. We are also huge fans of kinesio-taping and bracing if needed. Overall, optimization of the body as a whole, including nutrition, posture, hydration, and proper exercise will lead to significant improvements. Please consider donating to our Grateful Patient Program to help support research and care.

References

Courseault J, Kessler E, Moran A, Labbe A. Fascial Hydrodissection for Chronic Hamstring Injury. Curr Sports Med Rep. 2019 Nov;18(11):416-420. doi: 10.1249/JSR.0000000000000650. PMID: 31702723.

Connelly, Emma et al. ‘A Study Exploring the Prevalence of Joint Hypermobility Syndrome in Patients Attending a Musculoskeletal Triage Clinic’. 1 Jan. 2015 : 43 – 53.

Levy HP. Hypermobile Ehlers-Danlos Syndrome. 2004 Oct 22 [Updated 2018 Jun 21]. In: Adam MP, Ardinger HH, Pagon RA, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2022. Available from: https://www.ncbi.nlm.nih.gov/books/NBK1279/

Check out other resources on our site, or other great information from the Ehlers-Danlos Society.