Scleroderma and Fatigue: Insights from March 2024 VES

This blog post summarises the key insights from the latest Virtual Education Session (VES) led by Dr Jessica Fairley (MBBS(Hons) FRACP), an expert in the field of Scleroderma and fatigue and an early career rheumatologist and PhD candidate in Melbourne, with a particular interest in systemic sclerosis and cardiopulmonary manifestations of connective tissue disease.

This article includes an overview of the most common causes of fatigue in individuals with Scleroderma and some of the suggested ways to manage them.

For more in-depth information, please download our free Scleroderma- Managing Fatigue Brochure

Fatigue Causes

Fatigue is not the same as feeling sleepy or tired. It is a complete lack of energy to the point it affects daily living. Everyone can feel fatigue, but it does commonly have a massive, debilitating impact on the lives of people with Scleroderma.

For the first part of this session, Dr Fairley covered the main factors that may contribute to fatigue in people with Scleroderma. A summary of them can be found below:

  • Inflammation: Scleroderma involves inflammation of the skin and other parts of the body, which can directly cause fatigue. Elevated inflammation markers in the blood are also associated with increased fatigue.
  • Organ Problems: Complications of Scleroderma, such as heart and lung issues, contribute to fatigue. Further, having a reduced exercise capacity due to heart or lung problems can exacerbate fatigue, hence why moving when possible – and when comfortable – is so important to many aspects of our health.
  • Symptom Interactions: Fatigue intersects with other symptoms like breathlessness and pain, forming an uncomfortable cycle that worsens overall exhaustion.
  • Medications: Some medications used to manage autoimmune diseases can induce fatigue directly or interfere with sleep, exacerbating fatigue. To try and prevent this, ask your doctor about the side effects before you use a new medication, or ask for a non-drowsy medication where possible. Let them know your goals so they can best assist you!
  • Gut Issues: Problems like malabsorption, bleeding, and reflux in Scleroderma can lead to nutrient deficiencies, anaemia, and disrupted sleep with reflux, contributing further to fatigue. Reflux especially can be heightened if you lie down right after a meal, because we lose the effect of gravity holding food in our stomach. 
  • Sleep Disturbances: Poor sleep quality, whether due to autoimmune symptoms, infections, insomnia or other factors, obviously exacerbates fatigue, not letting your body rest and recover from the fatigue it was already feeling.
  • Hormonal Changes: Menopause, which is really common for Scleroderma patients as we are, more often than not, women around fifty, can also cause or emphasise fatigue. Menopause is already a big enough life change, with hormonal fluctuations naturally causing dips in energy, but trying to deal with Scleroderma on top of that is definitely a cause for fatigue.
  • Thyroid Disorders: Thyroid imbalances, particularly hypothyroidism, are a common cause of fatigue and are usually one of the first things checked in patients presenting with fatigue. 
  • Mood Disorders: There’s a bidirectional relationship between fatigue, mood and mental health, with fatigue worsening mood, which in turn worsens fatigue and so on, creating a vicious cycle that is important to be aware of.
  • Other Factors: Chronic infections, kidney and liver problems, bladder issues, substance use, and lifestyle factors like smoking and alcohol consumption can also contribute to fatigue.

Research on fatigue in Scleroderma, such as the Australian Scleroderma Cohort Study, highlights the severity and persistence of fatigue in this population. People with Scleroderma consistently report significant levels of fatigue, comparable to or even surpassing those in cancer patients.

Factors associated with increased fatigue in Scleroderma include worsening skin involvement, pulmonary hypertension, heart dysfunction, and gastrointestinal symptoms.

Managing Fatigue

Understanding the multifaceted nature of fatigue in autoimmune diseases like Scleroderma is crucial for developing comprehensive management strategies that address its various contributing factors. However, due to its complexity, fatigue remains challenging to treat effectively in clinical settings.

Dr Fairley reinforced the importance of a comprehensive approach to its management in the second part of this session. Fatigue is an incredibly individual experience, varying from person to person. Clinical assessment, along with appropriate diagnostic testing, helps identify underlying causes and tailor treatment strategies. In clinical assessments, discussing sleep patterns, other symptoms, and life events that may impact fatigue are a start to figuring out the potential sources of fatigue and therefore the best ways to manage it moving forward. Diagnostic testing, including blood tests, pulmonary function tests, and heart evaluations, may also be ordered based on the clinical presentation.

Management of fatigue involves addressing various aspects of patients’ lives. Dr Fairley recommended optimising sleep hygiene, pacing activities, incorporating graded exercise, and maintaining a balanced diet with sufficient protein intake. Managing stress and seeking support from organisations (such as ours!) are also beneficial ways to reduce fatigue, feel connected and get help from others.

While there may not be a quick fix for fatigue, Dr Fairley emphasised setting realistic expectations and focusing on improving function and quality of life rather than aiming for a complete cure. She suggests considering cognitive behavioural therapy as a valuable tool for coping with chronic symptoms and optimising well-being. 

“Some people do find things like cognitive behavioural therapy helpful… You might be struggling with depression, anxiety, other chronic pain and other symptoms as well and the role of behavioural therapy in these contexts is to talk about how you live with symptoms, optimise function and learn different skills to help and manage that moving forward.”

Most people find that there is a certain number of active activities they can do before they need to take a break, so prioritise what is important to you, such as work, socialising and/or some form of self care to make sure you have a well-balanced day that is mentally beneficial as well as productive. People will often find that certain activities are harder at different times, so do your best to recognise the easier times and try to do them at a time when you feel most energised and most able to finish them. Fairley says it’s all about pacing yourself and strategically planning your activities to match your level of fatigue. 

If you’re dealing with fatigue, ensure you’re seeking help from a health professional, listening to your own body and finding what works for you.

For those living with scleroderma, staying updated and informed can make a world of difference. Connecting with others can also be hugely beneficial. Click here to find out more about support in your area. 

Our National Education Sessions or Virtual Education Sessions are offered at no cost. Virtual Education Sessions happen every month via Google Meet. 

During these sessions, we’ve invited medical professionals and experienced legal experts to address frequent questions about Scleroderma and other topics related to it.

These sessions provide an opportunity to engage with medical professionals and seasoned legal experts who will address common inquiries about scleroderma and related topics.