We’ve all seen the the person who can bend their thumbs to places that make you cringe. “Doesn’t that hurt?” you blurt out as you peek back through your fingers. “Nope,” the thumb twister responds. But, but, how and WHY can you do that? Excellent question! The answer is that they were likely born with this ability. It’s also very likely they can do this with a lot of other joints in their body. Other examples would include many of the Cirque De Soleil performers and other contortionists. Looking back on my very stiff body doing yoga, I used to be green with envy of the people in the front that could bend, twist and reach in ways I could only imagine. While some of this is hard work come to fruition, there is undoubtedly a genetic component to the folks who have always been able to effortlessly move beyond the “normal” ranges of motion. So why CAN certain people move like this?
There is a genetic condition called Ehlers Danlos Syndrome (EDS) that is an umbrella term for a group of connective tissue disorders that present with symptoms (but not limited to) Hypermobility, elastic/stretchy skin, and vascular compromise. There are basically 6 main subtypes of EDS including Classical, Hypermobile, Vasscular, Kyphoscoliosis, Arthrochalasia, and Dermatosparaxis. There are also 7 more rare subtypes. Throughout the years treating EDS, I have only seen the Classical, Hypermobile and Vascular types. That doesn’t mean that some of my patients didn’t have the other subtypes, it just means they weren’t diagnosed. It’s also important to mention that EDS is a rare condition and not everyone who is flexible has EDS or Hypermobility Syndrome. My intention is to create awareness and provide guidance/resources to those who potentially have EDS or Hypermobility Syndrome.
Getting an official diagnosis means finding a geneticist that understands EDS and is willing and available to do the testing. This can be tricky as there are only a certain number of specialists in the USA and the wait times (if they are willing to take your case) can be up to 2 years. Sooooo, how can you determine if you have Hypermobility or EDS? On the practical side, I’d recommend reflecting back to your childhood and adolescence and think about what types of activities or sports you were drawn to and/or really good at it? Was it gymnastics, ballet, or running, versus basketball or football? As you got older, did those activities that brought you joy start to bring you pain? When did the subluxations (partial dislocation of a joint) start? When did the full joint dislocations start? Did you then think, well I’ll start to take it easy and do yoga? Of course you did! Not all people with Hypermobility or EDS choose “bendy” type activities, but looking at your history can be helpful in knowing what type of help is best to seek.
Another tool that you can use on your own is the Beighton Scale. The Ehlers-Danlos Society put out a video demonstrating how to do the self-assessment (https://www.youtube.com/watch?v=A_WJxNvFhYg&t=1s). Your doctor may also have you perform this in office/via telehealth. If you have 4 or more positives, you have at minimum, joint laxity/Hypermobility and possibly EDS. This scale is not a stand alone test that officially diagnoses EDS, but can let you know where your body is compared to the more typical and stable structured individuals. As mentioned earlier, it is necessary to get the appropriate genetic testing to confirm the diagnosis. In regard to Vascular EDS, some of the symptoms (but not limited to) that could be indicative of this subtype are thin, translucent skin, muscle or tendon rupture, early onset varicose veins, characteristic facial appearance (thin lips, small chin, thin nose, large or deep-set eyes), and uterine rupture during pregnancy or prolapse.
The patients I have treated with Hypermobility or EDS, range from having subluxations (partial joint dislocation) during sports, to experiencing multiple full on dislocations happening as they sleep. EDS is a baffling and frustrating condition that is often overlooked until pain and/or dislocations start happening. Many parents think that being really flexible is just how their kids are and that they just “take after them” in this way. Early recognition of EDS and/or Hypermobility is important as there are ways to minimize and prolong the onset of pain, joint damage, arthritis and tendonitis. It’s also not too late if you feel you have been dealing with this for a long time and been in pain longer than you can remember. Here are some things that you can do if you think you are hypermobile or have EDS, and you are unable to see a specialist, or just aren’t sure where to start.
Talk to your primary care doctor and explain what you are (or your family member is) experiencing and that you would like to address the issue so you can prevent future problems.
Consult with an Occupational Therapist (ideally a Certified Hand Therapist) about supportive braces for your hands and wrists for joint protection. In my practice I also provide certain manual therapies such as Bowenwork that addresses the soft tissue to provide pain relief.
If you feel clumsy and tend to fall during normal activities, or are having lower body issues (knees, ankles and/or feet) consult with a Physical Therapist.
If you are unsure if you should see a Physical or Occupational Therapist, talk to one or both before scheduling to make sure that they are familiar with Hypermobility at the least, and ideally with EDS.
Choose low impact activities like pool exercise versus high impact activities or aggressive contact sports. Physical and Occupational Therapists can also make suggestions regarding safe activities so you can stay active!
I hope that this article shed some light on EDS and Hypermobility, as well as gave you some tools to potentially help guide you in the right direction. Know that there is help out there for pain relief and to safely strengthen your body to keep you doing the things in life you need and want to do!
Some helpful resources: The Ehlers-Danlos Society, Hypermobility Syndromes Association.