EDS Joint Hypermobility Syndrome
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. Interestingly this accident was not really sever at all and my coach was surprised I had to leave the game. After this day, I would have regular, often monthly, shoulder dislocations. Later, I also found out that that my lower ribs would move.
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! We all thought it was unusual as I was just taking off my sweater!
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. My resting heart rate was about 65 beats per minute but when I was standing it would would sit at over 100 and sometimes I would catch it climbing to over 120 beats per minute.
I began to do research 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 spectrum disorder. Suddenly, I made the connection to my shoulder dislocations.
EDS or Ehlers-Danlos Syndrome 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 and smooth muscle surrounding our arteries 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 functional blood flow issue. That said, it leads to many other symptoms like fatigue, digestive issues, temperature regulation and even food sensitivities, that make it very disabling. The collection of random and seeming unrelated symptoms, 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 a lot 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 symptomatic! Additionally many doctors have never heard of POTS so it is often missed and people can take years to find out.
There are lots, we can do to help with POTS. There is an increase need for water, salt and electrolytes that is much higher than in the genera population. Often times there are characteristic food sensitivities, specially dairy and wheat.
Today I have to be carful playing certain sports my last dislocation I was plying with my kids on the monkey bars. I find it fascinating 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.
Learn More About EDS Here:
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