Exercise and Ehlers Danlos Syndrome by Brian Kitzerow, DPT, CMPT, OCS

www.runwaypilates.com

We all know that there are several benefits that occur from participating in regular exercise.  But is exercise specifically helpful for the hypermobile type Ehlers Danlos Syndrome (hEDS) population?  And if so, how and why?  

We have good evidence that exercise is helpful for many components of our lives.  It helps with hormonal control of estrogen, testosterone, progesterone and cortisol.  It improves sleep cycles and the hormones involved in regulating our sleep patterns.  It helps improve muscle mass and prevents the loss of bone density. 

Exercise participation is strongly correlated with reductions in stress, anxiety, and depression, and improvements in mood and the sense of well-being.   Exercise is linked with improvements in coordination and decreases in fall risk.  Improvements in cognition, focus, and memory are also linked with exercise participation.  There has been strong evidence demonstrating that unstable joints are improved with exercise and that exercise can reduce daily pain levels.

As you may or may not know, EDS is a connective tissue disorder.  As connective tissue is widespread throughout the body, EDS has wide-ranging effects.  Joints are less stable and have a higher incidence of injury and subluxation.  Balance (or proprioception) is reduced raising the incidence of falls.  Bone density can be effected.  Muscle strength is commonly lower in this population (which some researchers have connected with joint proprioception deficits and others with fear of movement).   Dysfunctional movement patterns are adopted with impaired coordination.  And many different types of pains are experienced.  

But is exercise beneficial for patients with joint hypermobility syndrome (JHS) and hEDS?  Research is suggesting yes for many reasons. Kemp looked at young patients over a six-week exercise course in one of two groups. One group had a generalized strength and conditioning program, and the other group had a more focused joint stabilization exercise program.  Both groups demonstrated decreases in pain levels and functional assessment (roughly 30% improvement!) but the focused group also demonstrated more parental perceived functional gains.  Studies by Sahin, Pacey, and Celenay all found similar responses with improvements in both function and comfort.  A systematic review (assessment of all the available literature that the authors can find) in 2014 also found evidence for the use of balance retraining based exercises.

There is also limited evidence that just like hEDS, classical EDS (cEDS) responds well to exercise.  Moller looked at three cEDS patients who were treated with “heavy” strength training 3 days per week.  Measurements of the patellar tendon demonstrated improved strength of the tendon connective tissues from 1795 N/mm to 2519N/mm (>70% increase in strength).  Energy levels and perceived strength were both improved in all subjects.  And even though these exercise routines were very intensive, pain levels did not increase at the end of the study for 2 of the 3 subjects and were actually lower in the third subject.  

In conclusion, the research is currently very supportive of exercise to improve function and comfort in the hEDS, JHS, and cEDS populations.  It appears that there are better results from emphasizing trunk stabilization and balance based exercises, but all types of exercise studied showed improvements.  It can be very helpful to be treated under the supervision of a physical therapist to oversee a controlled, graded progression of your program, as well as to address existing injuries with manual interventions as they interfere with your exercise program.  Clinical experience suggests that exercise is the key intervention to return freedom, function and comfort in your life.  Though connective tissue may be lax, muscle remains responsive to exercise and strength needs to be emphasized to compensate for ligamentous laxity.

Do or someone you know suffer from EDS? Do you suspect but are unsure? Considering coming to All Ways Well for an assessment from an experienced Physical Therapist. Email me questions or request an appointment online today.

​~Brian Kitzerow, DPT

---

1.  Møller M, Kjaer M, Brüggebusch R, Jesper S, Andersen L, Peter S, Rie M.  Functional adaptation of tendon and skeletal muscle to resistance training in three patients with genetically verified classic Ehlers Danlos Syndrome.  Muscles, Ligaments and Tendons Journal. 2014;4(3):315-323.
2. Pacey V, Tofts L, Adams R, Munns C, Nicholson L.  Exercise in children with joint hypermobility syndrome and knee pain: a randomised controlled trial comparing exercise into hypermobile versus neutral knee extension.  Pediatric rheumatology online journal. 2013;11(1):1-11.
3. Smith T, Bacon H, Jerman E, Easton V, Armon K, Poland F, Macgregor A.  Physiotherapy and occupational therapy interventions for people with benign joint hypermobility syndrome: a systematic review of clinical trials. Disability and Rehabilitation. 2014;36(10):797-803.
4. Kemp S, Roberts I, Gamble C, Wilkinson S, Davidson J, Baildam E, Cleary A, McCann L, Beresford M.  A randomized comparative trial of generalized vs targeted physiotherapy in the management of childhood hypermobility.  Rheumatology. 2010;49(2):315-325.
5. Sahin N, Bakent A, Cakmak A, Salli A, Ugurlu H, Berker E.  Evaluation of knee proprioception and effects of proprioception exercise in patients with benign joint hypermobility syndrome.  Rheumatology International. 2008;28:996-1000.
6. Celenay T, Keya D.  Effects of spinal stabilization exercises in women with benign joint hypermobility syndrome: a randomized controlled trial.  Rheumatology Internation.  2017;0:1-8.