Scleroderma Awareness Month 2016
DAY 20: BONES, JOINTS, MUSCLES
This includes my toes, feet, ankles, knees, hips, elbows, shoulder, neck, wrists and hands.
These symptoms are an overlap with rheumatoid arthritis.
Thanks go to the UK patient Alex for sharing her image for awareness purposes.
This makes for most tasks, even the most basic, extremely difficult, making independence almost non existent.
This is the most recent headline: 'It feels like my body is wrapped in barbed wire and dipped in concrete'.
Sadly, my gym days are a distant memory from nearly two decades ago, as, my muscles are now, weak and tender.
Over the last few years, should I put my body through too much physical exertion, my muscles will tremor causing my body to shake, with bed rest being the only solution.
With some scleroderma patients, even with all of the best will in the world, exercise is not a possibility, as it makes the symptoms worse, ie pain, swelling, inflammation, fatigue etc.
This makes movement feel as though, I am carrying lead weights in each limb.
I focussed on this debilitating and life changing aspect of the scleroderma patient experience on Day 25 Scleroderma Awareness Month 2016 ~ living the dream, hoping for a cure!
An edited version of this article was published here, in my Column with Scleroderma News.
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
2016 Rare Disease Day Patient Voice