Ehlers-Danlos Syndrome – Type III Hypermobility (hEDS) often goes undiagnosed for years. Very likely a person with hEDS experiences pain and an odd list of symptoms. Until they’re diagnosed, doctors, family, and friends may doubt their complaints. Have you been told it’s all it your head?
Those with hEDS are missing one or more collagens. Collagens are found in connective tissues used virtually everywhere in your body. If you’ve been diagnosed with hEDS, you may:
- feel the effects more in one area than another
- have stretch marks on many body parts and scars from minor injuries
- experience dislocations or subluxations easily in joints like the shoulders or wrists
- have insensitivity to anesthetics (imagine convincing your dentist you need more, more, more)
- have low bone density
- have low blood pressure
Joint hypermobility decreases as we age and is less pronounced in men, generally, so diagnosing hEDS later in life is more difficult. It affects about 1/5000 to 1/20,000 and can range from mild to severe. The large range they give is because researchers believe many patients are undiagnosed.
hEDS is tough to diagnose because, unlike other forms of EDS, hEDS has not yet been linked to a particular gene. Nevertheless, it is a genetic disorder. hEDS has a checklist of criteria and you can reference this PDF here. (There was a major revision in the criteria for hypermobility diagnoses in 2017.)
The most surprising and difficult symptom of hEDS that my family has experienced is gastrointestinal problems. When you’re missing a collagen, internal organs may function differently, stretching too much, moving weakly, etc.
One of the things we’re told to avoid is movements that turn our joints into levers; that is, don’t do things like Olympic lifts because we may dislocate something. I still do because I love them, but I have to be careful since my shoulders are where I feel the effect of hEDS most. One of the things we’re told is we should do strength training to build up muscle around joints. I do this and have trained hEDS clients using mostly closed chain exercises and dumbbell work.
In fact, strength training is really the only treatment for hEDS.
Why? Because if you have hEDS, you have weak, stretchy ligaments and tendons. This means your muscles have to do extra work to stabilize you. A few observations as someone with hEDS and who has trained clients with hEDS:
- Stretching before or after exercise is counterproductive. You’re not prepping your muscles like other athletes; you’re weakening your joints. Just start with a cardio warm-up — a jog, burpees, jump ropes.
- Don’t expect to have loose joints everywhere. I’ve seen this with clients who can completely rotate their shoulders but can’t do a forward bend. You’ll have weak joints that may be different from another hEDS patient, and you’ll also have tight joints where your muscles have worked to stabilize against the loosey goosey joints. My youngest, for example, can rotate his arms 360 degrees but can’t touch his toes.
Visit the Ehlers-Danlos Society YouTube Page for information on diagnosis, symptoms, and pain management.
Hypermobile Ehlers-Danlos syndrome (hEDS) is generally considered the least severe type of EDS, although significant complications, primarily musculoskeletal, can and do occur. The skin is often soft and may be mildly hyperextensible. Subluxations and dislocations are common; they may occur spontaneously or with minimal trauma and can be acutely painful. Degenerative joint disease is common. Chronic pain, distinct from that associated with acute dislocations, is a serious complication of the condition and can be both physically and psychologically disabling. Easy bruising, functional bowel disorders, and cardiovascular autonomic dysfunction are common. Aortic root dilation, when present, is typically of a mild degree with no increased risk of dissection in the absence of significant dilation. Psychological dysfunction, psychosocial impairment, and emotional problems are common.From NCBI