Welcome to my blog - I was diagnosed in 1997, and given a 15month prognosis. In 1998 I became a patient at the Scleroderma Unit, The Royal Free Hospital. The cause and cure to both Scleroderma and Raynaud's remain unknown. Please donate to help fund medical research where 100% of your donation will be used for research purposes only.
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Wednesday, 29 March 2017
Living the dream as the real-life 'tin man', Scleroderma and Raynauds style
The Real Life Tin Man
For today’s article and to tie
in with Autoimmune Disease Awareness Month of March, I am going to focus on the
overlap symptom of Musculoskeletal involvement. This symptom of stiff,
inflamed, painful joints and muscles can be seen across a range of the
autoimmune diseases, with arthritis being the most prevalent and commonly
known, and diffuse scleroderma mimicking it. Along withFatigueadding to the mix.
My diffuse scleroderma
diagnosis has quite literally turned my body into me being the ‘real life tin
I experience continual muscle
and joint stiffness which increases in severity if I expect too much of my body
or push my body to do too many tasks in one day.Similar to the joint swelling seen in
rheumatoid arthritis, all of my joints are painful, stiff and swollen, with
analgesic / steroid medication providing marginal, borderline relief.
I will start my day by bathing
with liquid paraffin to ease my skin symptoms, which, after 19 years since
diagnosis, my skin is cured fromscleroderma.
Bathing provides a circulatory
boost which settles my Raynauds symptoms and also provides
some easing of the continual musculoskeletal pain. Sadly, I am no longer able
to jump in and out of the bath, similar to Daisy from the 1970s TV programme
‘Dukes of Hazard’ jumping in and out of her car.
Since my diffuse scleroderma
diagnosis in 1997, I can not remember a day whereby I have been pain free.
Living in constant chronic pain is a mission within itself, without the added
extra scleroderma symptom specialities (GI, ulcers, calcinosis etc) sprinkled
into the mix. I focussed on several of the currentunmet clinical needshere.
I have to be super organised
with planning my time in relation to managing this highly demanding ‘tin man’
like symptom. Medical appointments clearly take priority in my diary, and
should a trip to see one of the world’s leading scleroderma experts, Prof Chris
Denton, at the Royal Free Hospital in London be due, weeks of advance
preparation will have been started.
As well as, I know that for
the 10 days following a ‘BIG’ day out, I will be unable to function even less
than usual, with an elevated level of pain and tiredness which words can not
justify. I detailed more of my time management stylehere.
Since coming out of the
scleroderma closet to the world in 2013, to raise awareness of this rare,
extremely challenging disease, I have made several headlines including:
Although headline grabbing,
this symptom of Scleroderma is most debilitating and still remains clinically
inadequately managed in terms of quality of life for patient management. It
certainly does feel as though my body has been ‘wrapped in barbed wire and then
dipped in concrete’ as by the Daily Mail headline of last year for JuneScleroderma Awareness Month.
Having been a regular gym
frequenter, up to, and during the first few years of my diffuse scleroderma
diagnosis, sadly, this activity is now a long distant memory of the last 18
years. The most basic of tasks such as getting dressed, on some days, can feel
similar to a Mount Everest expedition, with the energy of a cardboard cut-out
having been left out in the rain overnight.
It is now nearly 12 months
since I purchased an electric scooter which I use for dog walking. I wrote
Over the years I have attended
several physiotherapy sessions with little gain and lots of pain, and sheer
exhaustion from trying. However, it still remains a personal goal of mine, to
return to the gym, one day. In the meantime, I am working on my sofa surfing
skills, allowing my tin man body to rest and heal- reminding myself that, my
job for today is to simply ‘get better’.
I discussed more of the
autoimmune rare disease similaritieshere.
Our next big awareness date as
a global community is June for Scleroderma Awareness Month, and of course, June
29th is World Scleroderma Day
Living the dream, scleroderma
Please make a donation to my
Just Giving page where 100% of your donation will fund medical research led by
Prof Chris Denton at the Royal Free Hospital in London, to whom I am forever
grateful to for making sure that I have far exceeded my initial prognosis