I was Hyperactive, “Overly-sensitive”…

EDSers in  Australia are also promoting EDS Awareness in their communities.

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Editor Note: I was diagnosed with EDS just over four years ago now. The Internet has been my saviour and this article comes from one of my online readers who found me because of my EDS. I’m delighted to be able to give space to Tara to both tell her story and raise awareness. zebra

May is awareness month for Ehlers-Danlos Syndrome and other disorders of the connective tissues including Joint Hypermobility Syndrome.  So, let’s start off with a bit of a potted history of how I was eventually diagnosed with JHS.

Sorry to get too personal straight away, but one of my earliest memories is of always being constipated.  This continues to this day.

My mother will certainly agree that I was ‘hyperactive’, couldn’t sit still, had significant problems with sleep and was, ‘over-sensitive’.  Recent studies suggest that these symptoms are because people with JHS/EDS-HM are likely to be very sensitive to adrenaline (amongst other things such as bandaids in my case).

At quite an early age I was diagnosed with growing pains.  I now know that no such thing exists and this is often an early warning sign of things to come.  I, and my other siblings also suffered extremely bad blood noses until our teens (I don’t know if this is related but would love to hear people’s thought on this).  I was brilliant at gymnastics and of course carried out the usual party tricks, along with one of my sisters, by contorting my body in ways that really shouldn’t have been possible.

Later, in my teens I started suffering faintness whenever I stood up from sitting or lying.  I now know this is due to low blood pressure, dysautonomia (basically malfunctioning autonomic nervous system) and is known as orthostatic hypotension.  At the time I was told it was because I was tall – possibly one of the most absurd diagnoses I have ever received.

During my 20s I started getting shoulder pain.  It was at this time that various massage therapists, chiropractors and other ‘body workers’ started mentioning hypermobility.  All I knew was that I had always been very flexible.  I was also diagnosed with Irritable Bowel Syndrome.

In my 30s the allergies kicked in, along with pain in my hips and sacro-iliac joints, migraine headaches and jaw problems.

As things got progressively worse and my list of symptoms grew to over a page long.  I started more serious investigations.  My variety of diagnoses included Chronic Fatigue Syndrome, Fibromyalgia, depression, anxiety, hyperchondria, somatoform disorder, and possible mast cell disorder, as well as “I don’t know, have you tried national therapies or Chinese medicine”.

My research continued and bit by bit I started to think that my hypermobility may be at the root of all my symptoms.  I bought a book on the subject and discussed it with my GP and sports physician.  So far, it has been agreed that perhaps I have JHS but that I can’t possibly have EDS-HM (in Australia these are seen as different conditions, unlike in the rest of the developed world where they are now considered the same).  I was 43 years old at this time.

My search continues for someone with speciality in this area and I am soon to see a geneticist to get (hopefully) a definitive diagnosis , some management tips and some suggestions on medical practitioners in my area that may have some idea what I’m talking about.

In the meantime, during this EDS Awareness Month (and beyond), I am trying to raise awareness of this often overlooked, poorly understood and under-diagnosed condition.  I educate my medical professionals at every opportunity but much more needs to be done.

So what exactly is Joint Hypermobility Syndrome?  The first thing to appreciate is that joint hypermobility is commonly found in a group of conditions called the Hereditary Disorders of Connective Tissue.  The most common of these is Joint Hypermobility Syndrome.  This group of conditions also include Ehlers Danlos Syndrome and Marfan Syndrome.  To further confuse this, the terminology for the most common of these conditions can get a little confusing. The names Joint Hypermobility Syndrome (JHS) and Ehlers Danlos Syndrome (EDS) are interchangeable in one particular circumstance.  There are a number of rare variants of EDS, however there is one that is common.  It is called EDS-Hypermobility Type (EDS-HM).  It is considered by many experts to be synonymous with Joint Hypermobility Syndrome (JHS).  So the terms JHS and EDS-HM are often used interchangeable.

A note on the other forms of EDS.  I won’t be going into them here.  I mean no offense at all to those that have these conditions.  I just do not know enough about them to give them justice here.

The problems related to JHS/EDS-HM are varied, and can be much more than just the joints.  The first thing to appreciate is that joint hypermobility is common.  It may be present in just a few joints or it may be widespread.  Joint hypermobility may be of no medical consequence.  For this reason there is a risk it is dismissed as not important because many people do not appear to have a problem.

However, joint hypermobility may be associated with several recurring or persistent problems, including:

  • Repeated joint sprains and ligament and tendon injuries that may take longer than average to recover or may become persistent;
  • Joint subluxation (incomplete dislocation) or dislocation of joints;
  • Local or widespread joint pain;
  • Early onset of ‘wear and tear’ arthritis, for example spinal degenerative disease at a young age; and
  • Poor balance / clumsiness.

These musculoskeletal, physical problems can become very disabling and interfere with daily activities, schooling, work etc.  The pain associated with this can become widespread and persistent and is often initially diagnosed as and confused with Fibromyalgia.  Severe fatigue can also become an issue, driven by chronic pain and poor sleep patterns.  Like Fibromyalgia this may be confused with Chronic Fatigue Syndrome.  It is common for individuals to have spent many years seeking advice and treatment from a number of different medical specialities and therapist before an over-arching diagnosis of JHS/EDS-HM is made.

The things individuals present with beyond joint problems include:

  • Easy bruising, scarring that is stretched, thin and often wrinkled, and stretch marks that appeared at a young age and in many places across the body;
  • Weakness of the abdominal and pelvic wall muscles that presents as hernias (such as hiatus hernia) or prolapse of the pelvic floor causing problems with bowel and bladder function;
  • Unexplained chest pains – perhaps the individual has been told they have a heart murmur and Mitral Valve prolapse;
  • Blackouts or near blackouts that may be associated with low blood pressure or fast heart rate, and often triggered by change in posture from lying/sitting to standing, or after standing in one position for even just a few minutes;
  • Symptoms that sound like Irritable Bowel Syndrome with bloating and constipation;
  • Shortness of breath, perhaps diagnosed as asthma but not responding to inhalers in the way the doctor might have expected;
  • Noticing that local anaesthetics, used for example in dentistry, do not seem to be very effective or require much more than might be expected;
  • Severe fatigue; and
  • Anxiety and phobias.

This is a genetic condition and no cure is currently available, but if we can raise awareness then hopefully others won’t take 43 years to be diagnosed and some better management approaches can be developed.

Please circulate this to anyone that you think may benefit, and if you are interested in finding out more, please Google.  There is also an Australian online support group at http://edsaus.ning.com/ and on facebook at https://www.facebook.com/edsaus?fref=ts.

Oh, and why the zebra?  In many places the medical slang for someone with a (supposedly) rare or obscure medical condition is a zebra.  Medical students are sometimes taught ‘When you hear hoof beats think horses not zebras’.  In other words, always look for the obvious problem rather than the unusual.  In many ways this is a good thing, but not when it gets to the point where people are forgetting what zebras look like, or even the fact that they exist.

Tara Hewitt originates from Western Australia.  She is 44 years of age and currently lives in Tasmania with her husband, working as a public servant.  Medical issues allowing, she enjoys keeping fit and bushwalking, and travelling overseas as often as possible.  When her body won’t cooperate she cooks and reads a lot.

It continues to be difficult to find doctors who can properly diagnose and treat Ehlers-Danlos Syndrome.

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