We all remember a kid who wowed us with her “double-jointed” tricks. Maybe we were that kid.
Maybe our bodies were unique in other ways, too, with stretchy skin or stretch marks where there was no fat. Maybe we had chronic episodes of acid reflux, indigestion, constipation, abdominal pain, bloating, or diarrhea. As we grew older, we suffered dislocations, sprains from unstable joints, and pain that would not respond to medications. After a dozen doctor visits we began to think we were crazy, or we struggled to convince our doctors that we weren’t just imagining it.
Ehlers-Danlos Syndromes (EDS) are a group of genetic tissue disorders in which there are defects in the structure or processing of collagens. Collagens are used throughout our bodies in many systems, so having a defect in one or more means symptoms as diverse as excessive bleeding during pregnancy, IBS, and a shoulder that dislocates when we swim.
You can be hypermobile without having EDS, and you can have a form of EDS that isn’t all about your joints. The diagnosis and prognosis for all types of EDS are changing because doctors are learning more about these disorders.
All forms of EDS have isolated specific genes linked to them, except for Type III: Hypermobility (hEDS). The hEDS disorder is characterized by hypermobile/hyperextensible/unstable joints prone to dislocations and subluxations; soft, easily damaged and slow healing skin; and chronic pain either localized in specific joints or generalized.
As we age with hEDS, we often experience an increase in pain and a decrease in activity as a result. hEDS is considered rare, but that’s probably due to under reporting — how many of us just live with chronic pain because we always have and figure it’s just that our bodies are “different”? Researchers believe hEDS is more common, and more people are being diagnosed today because we have more aggressive contact sports damaging our kids and more adults developing debilitating pain.
The absolute worst thing we can do is to let the pain stop us from moving. I know, because I have hEDS and passed it on to both of my kids. I also have clients with hEDS.
The thing about hEDS is it presents itself differently in each person. The pattern of pain, body region, and co-morbidities differs. There is no one-size-fits-all for exercise, but train you must! Exercise helps reduce pain and build the muscles that will help stabilize joints with stretchy ligaments.
Some points on starting exercise for those with hEDS:
- Start with closed chain exercise. These include exercises like push ups and squats, where the body part that is moving is anchored to the ground. Closed chain limits the lever length of the weight that can cause great strain on your loose joints. Bench press and leg lifts are examples of open chain exercise. Your joints may be able to handle these, but work up to them.
- Avoid Olympic lifts. I love these full-body, high intensity, core shredding exercises — like the snatch and clean & press — that we do regularly in crossfit work outs. But they are tough on joints for even an experienced athlete. Again, you may be fine working up to them, but don’t start here.
- Avoid stretching your muscles or develop very specific focused stretching techniques. Most of the dynamic stretching we do to loosen up or cool down feels great, but in the hEDS person, the tendons and ligaments are likely getting more of the stretch than the muscle. Try self myofascial release (SMR) with a styrofoam roller to work out knots and relax tight muscles.
- Identify your particular needs and select exercises that develop these areas for balance and stability. It seems like every hEDS person has a different overuse or dislocation story. Each of us has a spot of special weakness or pain. Know what yours are and be sure to communicate that to your trainer. Visit your physical therapist to help isolate your specific areas.
The criteria for diagnosing hEDS changed in 2017. As I mentioned, researchers are doing a lot of work in this area. If you think you may have EDS, talk to your doctor who may refer you to genetic counseling.
You can view a terrific video on exercise for hEDS above. The thumbnails below are a few takeaways from the video.