If you ask a 22 year old woman to
describe her life, you would expect something along the lines of work, friends,
socialising, holidays, opportunities and plans. When I asked 22 year old
Alex-Marie Wood, I didn’t get any of those things. Instead she listed daily
chronic pain, endless GP appointments, being unable to work and losing her
dream job, unable to socialise or exert herself and feelings of depression. A
day in Alex’s life can consist of migraines, mental and physical fatigue,
abdominal pain, waiting rooms for medical appointments and when she is at her
worst, help with dressing, bathing and eating. It doesn’t remotely sound like a
life anyone should be leading, even though her current situation is a big step
up from being diagnosed with growing pains and hypochondria in her teens. Alex
has hypermobility syndrome and suspected Ehlers-Danlos syndrome. Two conditions
that few doctors know much about and aren’t widely heard of in the public. They
aren’t actually rare; they are sadly quite common, but rarely diagnosed
properly.
EDS is a genetic connective tissue condition that is a multi-systemic syndrome. Connective tissue covers over 95% of your body so there is little that escapes the symptoms. (EDS UK) More can be read about EDS here: http://bend-trend-hms.blogspot.co.uk/2013/11/ehlers-danlos-syndrome-confusion-types.html
Joint hypermobility means some or all of a person's joints have an
unusually large range of movement.- joint pain
- back pain
- dislocated joints – when the joint comes out if its correct position
- soft tissue injuries, such as tenosynovitis (inflammation of the protective sheath around a tendon)
Lots of sufferers of both of these
syndromes will know that diagnosis is a battle. A long hard, painful one at
that. Alex shared her story with me from symptoms when she was a child to where
she is at now with referrals and treatments:
I had been in and
out of the doctor’s office on a regular basis from a rather young age,
complaining of chest pains, fatigue, shortness of breath, joint pains,
dislocations, anxiety and feeling dizzy but it was put down to growing pains
and a case of hypochondria. I wasn't able to do as much as the other children
as I was always falling over or damaging myself by accident so I lived a rather
sheltered life. In March 2013 I became ill with glandular fever, and this then
seemed to exacerbate the symptoms I had been suffering throughout my childhood.
The doctors initially thought I had Chronic fatigue syndrome or fibromyalgia as
I was in chronic pain and very lethargic. I was sent to an endocrinologist
which examined me and did endocrinology and rheumatology blood work, everything
came back negative. I rapidly deteriorated in December, losing between 7-9
pounds a week for six weeks as I struggled to keep food and liquid down. After
ten months of testing and going back and forth to the GP I was sent to a
rheumatologist for a second opinion in January of this year and that was when I
was diagnosed with hypermobility syndrome (with a beighton score of 9/9).
The
beighton score is a measure of how hypermobile an individual is and how
widespread it is. Clinically, it is quick to do and can be assessed in minutes.
However it is not always straight forward to diagnose someone with
hypermobility syndrome, as there are other symptoms that can be present. More
info on this can be found on the Hypermobility Syndrome Association’s website: http://hypermobility.org/help-advice/hypermobility-syndromes/beighton-score/
Pain
from hypermobility varies greatly from person to person. It can come on
suddenly and can be completely debilitating for one person, whereas for others
it can come and go as nagging pains through the day, disappearing at times then
returning. Unfortunately for Alex, she is at the high end of the pain scale. It
is difficult for people to look at someone who appears normal and looks healthy
and understand that they are actually suffering chronic pain. Expressing to people
that the pain is real is sometimes hard enough, even to doctors and
physiotherapists. The life of a ‘spoonie’ as chronic pain sufferers are known
can turn into an isolated and very miserable one.
I can become bed ridden for days, sometimes up to a week if I can't move
because the pain is simply too much to bear. However, on a good day I am able
to care for myself and go about my day as long as I am cautious and don't
partake in anything too strenuous. I have a lot of bad days but I spend a lot
of time educating researching this condition and I am making positive lifestyle
changes to reduce the amount of time I spend as a prisoner in my own body.
As I am limited in what I am capable of, I do not go to any social
events or go out to town to shop or socialise as I will really suffer for it
for the next few days. I experience good days and bad days but I can never tell
how I will be feeling from one day to the next. Being so limited in what I was
able to do, I feel that this has really affected my relationships with family
and friends. My mental and physical fatigue plagues me the most, I get tired
very easily and I struggle to keep up with conversation so I spend a lot of my
time sitting quietly. I am told that I am distant and I don't get myself
involved, but I am usually in a state where I am overwhelmed by pain and I
can't concentrate on what is going on around me. I'm not able to keep up with
the pace of life that my family and friends are at, and I sometimes can get
left behind which can be lonely at times. My friends and family are very
supportive and they try to include me in what they can, but given my fragility
I wouldn't be able to go out for a meal, partying, out shopping, go to Thorpe
park or on a family holiday so I miss out on quite a lot of things.
It is not just
socialising and taking part in days out and normal activities that is a
problem. Working when in pain can become impossible and opportunities can
become scarce and non-existent as employers will more often than not dismiss ‘hypermobility’
or ‘over-bendy joints’ as an excuse. This is not because people are
unreasonable, it’s because they don’t have an understanding, which is why Alex
is keen that people know what can happen when you have an invisible illness.
I have been dismissed from my place of work because of my illness, and
not only was the company providing me with amazing career prospects but they
were paying for me to complete a degree with other accreditation. I was working
towards becoming a systems engineer and I was working for one of the best IT
companies in the world, it was my dream and I was just over half way through
when I was told I would be unable to continue working and studying as I was no
longer well enough to work or sit an exam. I am still unable to work and I fear
that I am not going to get back into a healthy state so that I can return to
work.
Everyone knows what it’s
like to miss out on stuff for being ill, but for most this is due to having
flu, or a virus and they can jump back into life as soon as they are better.
However, imagine having to face the fact that to get better, you must first
convince the right people that something is wrong before you can begin a long
path of referrals, appointments and therapy to begin to get yourself back on
track. It’s an overwhelming and very realistic thing for many people in Alex’s
shoes. Awareness for HMS and EDS must improve, as well as training for medical
professionals, so her story doesn’t get repeated time and time again. Alex’s last words in her summary are certainly
not something that should be felt or said by anyone: I have become depressed, I have nearly given up and I have almost lost
my mind to this condition.
The
more awareness the conditions get, the quicker and better suffers can be
treated and get the help they need to keep their lives, and their minds, in
happier times.
The
HMSA website offers lots of help and advice: http://hypermobility.org/
As
does the EDS support UK: http://www.ehlers-danlos.org/
There
are also big social networks on Facebook and Twitter where stories are shared
and advice offered, so anyone suffering in silence should take a look and speak
up, just like Alex.
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