DAY 20 Scleroderma Awareness Month: BONES, JOINTS, MUSCLES
Most scleroderma patients will experience symptoms relating to their musculoskeletal system, including their bones, and in some cases this can lead to osteoporosis.
Again, it is important to note that no two scleroderma patients will present with the exact same symptoms, and the Bone, Joint, Muscle involvement can vary in each subset.
All of my joints are swollen, stiff, and painful. This includes my toes, feet, ankles, knees, hips, elbows, shoulder, neck, wrists, and hands. These symptoms are an overlap with rheumatoid arthritis.
The above image shows an Xray where damage to the wrist joint has required the patient to need surgical intervention. Thanks go to the UK patient Alex for sharing her image for awareness purposes.
In addition, huge thanks to the UK patient Vanessa, for sharing photos of her hands whereby her finger curling, caused by scleroderma, can be seen quite clearly. This makes for most tasks, even the most basic, extremely difficult, making independence almost non existent.
I have used my ‘tin man body’ symptoms as the catalyst to raise awareness of the rare disease, scleroderma, in the mainstream global media. This is the most recent headline:
To see more media articles, I focussed on this in Day 10 SclerodermaAwareness Month, click here
I have also written about my Mobility issues previously. To read the post, click here
Along with the fatigue, which is a constant companion, see my Day 14 Scleroderma Awareness Month post: click here.
Before diagnosis, I used to work out at the gym 4 times a week, and in particular, weight training, which made my muscles quite shapely and strong. 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.
Quite often, exercise is encouraged in arthritis patients to keep the joints supple. 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, i.e. pain, swelling, inflammation, fatigue, etc.
I very much admire my fellow scleroderma patients who are able to exercise, as my ‘tin man’ body feels as though I have been dipped in concrete and wrapped in barbed wire, as the headline states! This makes movement feel as though I am carrying lead weights in each limb.
I have constant chronic back pain, which makes it impossible for me stand or sit for medium to long time periods, all contributing to the ‘tin man’ effect. I will be focusing on this aspect of the scleroderma patient experience in my Day 25 post for Scleroderma Awareness Month ~ living the dream, hoping for a cure!
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