Just after university I became very unwell with joint and muscle
pain, fevers, bouts of confusion and fatigue. Having been fit and
relatively healthy before then (I'd rowed, trained in martial arts and
walked miles) I was suddenly unable to do anything much for myself. And
most physical activities were out of the question. Originally, I was
diagnosed with lupus and
treated with steroids and other medications. Although I would
occasionally improve enough to work or study for short periods I would
always relapse. Thankfully, my condition
was reassessed and I was given a new set of diagnoses: a nasty
infection that was treated with a long course of antibiotics and EDS.
EDS, also known as benign joint hypermobility syndrome, is an
inherited connective tissue disorder that causes very flexible joints
and muscles. Around one in 10 000 to 15 000 people are thought to be affected. For some people it causes no problems and can be
beneficial. Being bendy can be very helpful for some people. Rachmaninov
is thought to have had it, enabling his impressive keyboard skills. And
performing arts and sports doctors often have a special interest as
people with the disease are often drawn to activities where they can
show off their flexibility!
Unfortunately, sometimes if good care isn’t taken of the joints or
something else happens such as a serious injury or illness the condition
worsens and chronic pain develops. Although the most obvious symptoms
are related to the joints and muscles, subtler problems with the nervous
system, stomach and heart can be just as troublesome. It might even be associated with some neurological conditions (including temporal lobe epilepsy which I also have). When I first
realised all this I burst into tears in the physiotherapist's room. I
later found out this was a fairly standard occurrence for the newly
diagnosed EDS patient.
Luckily, there are things that can be done to improve the overall
wellbeing of EDS patients. In my case I’m going back to the real basics:
learning how to walk, stand and breathe in ways that don't cause me problems. I’m also building strong
muscles through extensive Classical Pilates and attempting to regain my stamina and learning to cope with the pain symptoms. All of this is done
with close supervision and keeping the EDS in mind.
But best of all, armed with the knowledge about my EDS and knowing what to do to help myself I can get back to having a normal life.
EDS is underdiagnosed and undertreated. So if you get a chance visit www.hypermobility.org to find out more.
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