EDS Joint Hypermobility Syndrome - More Than Just Injuries

I was in grade 12 when I fell during a rugby game. I heard a pop in my right shoulder and could see something was wrong. Immediately I went back to the change rooms and my shoulder popped back in. X-rays showed no injuries. After this day, I would have regular, often monthly, shoulder dislocations.

Once I had a bad dislocation that took me to the hospital. I was sitting in the library at Vancouver Island University where I would escape the chaotic sensory environment in between classes. It is a funny story thinking back! The librarian had never responded to a shoulder dislocation before!

15 or so years later, I was teaching virtually and purchased a stand-up desk. I thought this would be great! But soon I began to feel dizzy and had brain fog. On my break I just felt exhausted and would retreat to lay down. I noticed my heart rate was skyrocketing while standing at my desk.

This got me researching and I soon found information about a condition called POTS syndrome. One underlying genetic risk factor for this condition is a condition called EDS or joint hypermobility syndrome. Suddenly, I made the connection to my shoulder dislocations. EDS is a genetic condition involving collagen. It basically makes our tendons more stretchy and we are more at risk of dislocations and tissue injuries. But there is more! Collagen lines our arteries carrying our blood and when moving from sitting to standing our heart has to work harder to keep functional blood flow to the head. There is never a loss of consciousness or damage to the brain as it’s only a subclinical issue. This makes it so confusing to doctors.

People find that while standing their heart begins to race and they get bursts of adrenalin in an attempt to keep blood flow to the brain. Many people experience this as a feeling of dizziness, rapid heart rate, brain fog, and fatigue while standing. This condition can create alot of other problems as well because it influences all the automatic reflexes in the body. In some people, it can be extremely debilitating and they remain bedridden. While in others it can be episodic when the body is under stress. This is harder to identify because often during a doctor's visit we may not be synptomatic! Most doctors have never heard of POTS so it is often missed and people can take years to find out.

So my shoulder dislocations were a symptom of something more that influenced my entire body! Now it all makes sense and I have some clarity on why my heart was racing while teaching at my stand-up desk. I can manage it well now with some simple strategies.

nathan jefferyComment