DAY 20 Scleroderma Awareness Month: BONES, JOINTS, MUSCLES

DAY 20  Scleroderma Awareness Month:  BONES, JOINTS, MUSCLES

 

Day 20 Scleroderma Awareness month

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:

http://www.dailymail.co.uk/health/article-3620283/It-feels-like-body-wrapped-barbed-wire-dipped-concrete-Woman-s-joints-stiff-lie-oil-three-HOURS-move.html

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!

Note: Scleroderma is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this blog article are not those of Scleroderma News and are only intended to spark discussion about issues pertaining to the disease.

Having graduated with BSc Hons in Applied and Human Biology in 1995, I was working as a medical rep for Bristol Myers Squibb, when in 1997, aged 24, I was diagnosed with diffuse systemic sclerosis (scleroderma) and rayanuds and given a prognosis of 15 months, soon to be wheel chair bound. I was advised by my medical professional, at that time, to give up on my dream of being a barrister, and accept the diagnosis…… I did none of this! I changed my medical professional to international experts of the diagnosis (Dame Prof Black, and Prof Denton) and kept my dreams alive, qualifying as a practising barrister in March 2004. This prompted the medical decision to stop the 2g daily immunosuppressant routine of the previous 5 years, and unfortunately, within 8 weeks, I was forced to cease my 60hour working week and accept that the physical requirements of the role were too much for my body. I relocated to my family home town of Southport, UK. My full time job now, is to manage my symptoms to a controllable level. In 2013 I came out of the scleroderma closet to the world by way of the Daily Mail publishing my story with the headline ‘The Real Life Tin Man’ and since then I have devoted all of my spare energy to highlighting the plight of the scleroderma patient. In 2013 I became a patient advocate on the NHS England Clinical Reference Group for Specialised Rheumatology. I am honoured to have been a member of the clinical team who compiled the NHS England treatment guidelines for digital ulcers. In 2013, I also became a patient expert with the European Medicines Agency as well as Eurordis. In 2015 I was delighted to be a UK patient advocate for the FESCA World Scleroderma Day event held at the European Parliament: https://www.youtube.com/watch?v=KQimB_F2l_4 . I am wholly committed to improving the patient landscape which this diagnosis brings, and I feel very blessed that my symptoms are mild compared to other Ssc patients, whose voices, I hope to include also. Other than being a Ssc parrot, I enjoy relaxing with my dogs and anything which makes me feel good, as one day I want to be able to say I am scleroderma and raynauds free.
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Having graduated with BSc Hons in Applied and Human Biology in 1995, I was working as a medical rep for Bristol Myers Squibb, when in 1997, aged 24, I was diagnosed with diffuse systemic sclerosis (scleroderma) and rayanuds and given a prognosis of 15 months, soon to be wheel chair bound. I was advised by my medical professional, at that time, to give up on my dream of being a barrister, and accept the diagnosis…… I did none of this! I changed my medical professional to international experts of the diagnosis (Dame Prof Black, and Prof Denton) and kept my dreams alive, qualifying as a practising barrister in March 2004. This prompted the medical decision to stop the 2g daily immunosuppressant routine of the previous 5 years, and unfortunately, within 8 weeks, I was forced to cease my 60hour working week and accept that the physical requirements of the role were too much for my body. I relocated to my family home town of Southport, UK. My full time job now, is to manage my symptoms to a controllable level. In 2013 I came out of the scleroderma closet to the world by way of the Daily Mail publishing my story with the headline ‘The Real Life Tin Man’ and since then I have devoted all of my spare energy to highlighting the plight of the scleroderma patient. In 2013 I became a patient advocate on the NHS England Clinical Reference Group for Specialised Rheumatology. I am honoured to have been a member of the clinical team who compiled the NHS England treatment guidelines for digital ulcers. In 2013, I also became a patient expert with the European Medicines Agency as well as Eurordis. In 2015 I was delighted to be a UK patient advocate for the FESCA World Scleroderma Day event held at the European Parliament: https://www.youtube.com/watch?v=KQimB_F2l_4 . I am wholly committed to improving the patient landscape which this diagnosis brings, and I feel very blessed that my symptoms are mild compared to other Ssc patients, whose voices, I hope to include also. Other than being a Ssc parrot, I enjoy relaxing with my dogs and anything which makes me feel good, as one day I want to be able to say I am scleroderma and raynauds free.

One comment

  1. Jessie says:

    Hi, my 12-year-old (almost 13!)daughter became ill nearly 4 years ago now. It started with a flu-like illness then complaints of fatigue, her knee felt twisted then migratory joint pain, stomachaches and headaches. Anyhow, her ANA’s were high with a speckled pattern but before we could get in to see the rheumy, she got strep, took amox and her symptoms worsened (swollen joints, red itchy rash with hives all over that would not quit) and she began having neuropsychiatric symptoms. The skin issues turned into dermatographia, which she still has today. To make a long story short, over the next several months she was hospitalized twice and misdiagnosed twice (first with systemic lupus and put on Cellcept and plaquenil), which she took for 9 weeks until she could not walk due to pain and was hospitalized again. This time the children’s hospital diagnosed somatoform disorder, which his psychological (even though her ANA’s had skyrocketed to 1:1280). So…we went outside the box. After nearly a year of being sick, she was diagnosed with PANDAS/PANS and Lyme Disease (with 4 co-infections). She was been in treatment for this for nearly 3 years now and she is soooo much better so I know we are on the right track. She just graduated 7th grade with a 4.0 the whole year!! The thing is she still complains of her arms and legs hurting (but more mild) and she will have flare-ups of mostly her left knee feeling twisted. She still has dermatographia. I’m writing because her ANA tests still come back positive (1:160) and several times have come back positive for SCL-70. This scares the crap out of me. But, as far as I can tell, she does not have any of the skin symptoms. Could it be possible for her to have scleroderma solely in the connective tissue and internally (e.g. knee feeling twisted) or could it be the start of scleroderma? We really were traumatized by her whole experience and being told it was psychological by the children’s hospital. I don’t trust them. We tried to see if someone in the rheumatology dept. would see her but they refused after giving her psych dx. But the SCL-70 did not show up until after we started treating for lyme and her functional med specialist thinks it could be a false result due to the lyme…. but I want to make sure we are being diligent… what are some of the other symptoms and results related to scleroderma? She does have a history of low zinc, ferritin, vitamin d (and at one point iodine). Thanks for reading and for any feedback!!

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