Monday, 20 June 2016

DAY 20: Bones, Joints, Muscles, Scleroderma Awareness Month 2016

DAY 20: Bones, Joints, Muscles, Scleroderma Awareness Month 2016 

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. 

As well as, 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  Scleroderma Awareness Month 2016.

I have also written about my Mobility issues previously, click Mobility  

Along with the fatigue which is a constant companion, see Day 14 Scleroderma Awareness Month2016. 

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, ie 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 focussed on this debilitating and life changing aspect of the scleroderma patient experience in Day 25 Scleroderma Awareness Month 2016 ~ living the dream, hoping for a cure!
This article was originally published here  in my Column with Scleroderma News.
To read my articles:

Living the dream as the real life tin man, click here  

Ah, great, another day to spend in bed, said no Raynaud’s scleroderma patient, click here 


The importance of an early diagnosis click here 
the role of medical research click here
the importance of expert specialist centres click here
diet and nutrition click here
taking part in research trials click here
the UK guidelines for management and treatment of Scleroderma click here
my skin is cured from scleroderma click here 
BSR and BHPR guideline for the prescription and monitoring of non-biologic disease-modifying anti-rheumatic drugs, Raynaud's, Scleroderma, Rare Disease click here  
EULAR guidelines for treatment of systemic sclerosis scleroderma, click here  


Please DONATE to help fund medical research at the Scleroderma Unit at The Royal Free hospital where 100% of your donation will be used to fund vital medical research. Thank You.
 
May 2017 Total
Living the dream, scleroderma style, hoping for a cure
#SclerodermaFreeWorld #RaynaudsFreeWorld
29th June World Scleroderma Day. Read more here
Scleroderma Awareness flashback 2016. Read more here 
Scleroderma Awareness 2016 Campaign Index Click here 

Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates 
To view the Facebook page Scleroderma Awareness Month 2016 campaign images Click  here
To view Facebook page Photo Album ‘Wellbeing Side to living with Raynaud’s and Scleroderma’ Click  here 
Please use the icons below to share this article #SclerodermaAwareness







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