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 with, FATIGUE, adding to the mix.
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.
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.
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 current unmet clinical needs, here.
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.
I detailed more of my time management style, here.
To read the full article, Click here
To read the full article, Click here
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 June Scleroderma Awareness Month.
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.
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’.
An edited version of this article was published here, in my Column with Scleroderma News
Planning for the Future, Click here
Rare Disease Day 2020:
Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here
Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click here
Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here
2017 Rare Disease Day Medical Research
2016 Rare Disease Day Patient Voice
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
To read about medical research at the scleroderma unit, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
2018 Scleroderma Awareness Raising and Medical Research, Click here
Unmet Medical Needs, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
|Prof Chris Denton and I, Sept 2017|
This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
|Chat Magazine May 2019|
|James Carver, myself, Prof Chris Denton|
I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.
I am immensely grateful to James Carver, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
|The global Raynaud's trailblazer - Dr Howell and I, Sept 2017|
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.