Living with chronic fatigue

There’s no doubt that chronic fatigue is challenging to live with. If you think you might have it, you probably have a whole bunch of questions about how it could affect your life and what you can do to manage it. 

In this article, we explore the difference between tiredness and chronic fatigue, and the symptoms and causes of chronic fatigue. We’ll also give you some suggestions for what to do if you think you might have it. Living with chronic fatigue isn’t easy, but there is support available. You’re not alone in facing this.

What is chronic fatigue?

Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis, is extreme fatigue that lasts for at least six months and doesn’t improve with rest. It’s a long-term illness that, in addition to extreme exhaustion, can cause symptoms such as sleep problems and cognitive difficulties.

If you have CFS, it’s likely that you’re not able to function in the same way you did before you became ill. You might find it hard to do daily tasks like showering or cooking, or to keep a job or go to school.

Chronic fatigue symptoms can contribute to mental health issues, such as poor self-esteem and reduced self-confidence. CFS can also cause you to feel lonely as a result of the increased social isolation or withdrawal from your usual activities. Poor sleep (often a part of chronic fatigue) can also contribute to mood disorders and lessen your ability to cope with stress. 

What’s the difference between tiredness and chronic fatigue? 

While everyone gets tired sometimes, chronic fatigue is much more debilitating. 

Tiredness is usually linked to physical and mental exertion and is eased by rest, sleep and relaxation. 

Chronic fatigue is a longer-term and unexplained state of extreme tiredness that doesn’t improve with rest.

What are some common symptoms of chronic fatigue syndrome? 

CFS can present in varied ways and can fluctuate from day to day. The following symptoms are common with CFS but can also be caused by other things so it’s important to see a doctor to rule out any other issues:

• Extreme and persistent fatigue: severe unexplained fatigue that lasts at least six months and isn’t eased by rest.

• Cognitive difficulties: issues with concentration, mental clarity (sometimes known as ‘brain fog’) and memory.

• Post-exertional malaise (PEM): ‘crashing’ after minimal physical or mental activity. 

• Disrupted sleep: despite the fatigue they experience, people with CFS have problems with sleep, including insomnia, unrefreshing sleep or a disrupted sleep-wake cycle. 

• Gastrointestinal changes: such as nausea, bloating, constipation or diarrhoea

• Muscle and joint pain

• Headaches

Chronic fatigue can have a significant impact on your mental health. Having an ongoing lack of energy and motivation, along with feeling generally unwell, can really take a toll. 

Chronic fatigue symptoms can contribute to the development or worsening of mental health issues such as depression and anxiety, so it’s really important to get the support you need to manage both chronic fatigue and your mental health. 

What are the causes of chronic fatigue? 

Unfortunately, the exact causes of this complex and little-understood syndrome aren’t known. However, we do know that multiple factors contribute to developing the condition. These may include:

viral or bacterial infection

• exposure to environmental toxins

• genetics (chronic fatigue can run in families)

• physical or emotional stress affecting body chemistry

• physical or emotional trauma

• changes to your immune system and the way it responds to infection or stress.

Can young people get chronic fatigue?

It’s a common myth that only adults can have chronic fatigue. In reality, it can affect people of all ages, including young people. It’s particularly hard to diagnose chronic fatigue in young people because adolescents commonly experience fatigue. 

It can be extra challenging for young people to deal with CSF, due to their stage of life. As a young person, you’re often expected to be socially active as well as to participate in school, study, work and the wider community. This can be really difficult when you’re experiencing chronic fatigue symptoms. 

You may also miss out on building friendships and relationships at an important time in your life. And living with chronic fatigue can put pressure on your relationships with family, especially with family members who may be supporting or caring for you.

It’s important to seek mental health support if you need to, such as from a mental health professional.

This is also where self-care comes in - it’s so important to do the things that help you to feel better. Here are some low-cost self-care activities that you could try:

• Listen to an interesting or uplifting podcast 

• Listen to your favourite music

• Have a relaxing bath or shower

• Read a chapter of a book by an author you enjoy

• Do a short, gentle yoga class on YouTube

• Spend five minutes journaling your feelings and experiences

• Play your favourite video game.

How can I know for sure that I have chronic fatigue syndrome?

Getting a diagnosis of CFS can be challenging because so much is unknown about the condition. If you’re experiencing symptoms, the first step is to see a GP and to tell them what's going on for you. Your GP should ask about your and your family’s medical history and may do some tests to rule out other conditions. 

Unfortunately there’s no simple chronic fatigue syndrome test, but your GP will ask lots of questions to help them evaluate your symptoms and make suggestions to help you with them. 

You can only get a diagnosis of chronic fatigue syndrome if you’ve had symptoms for six months or more. It can be helpful to keep a record to track your symptoms during this time. Also, check out some tips on what you can do next if you do receive a chronic fatigue diagnosis.

What should I do if I think I have chronic fatigue?

The first step is to consult a healthcare professional such as a GP for a thorough evaluation of your symptoms.

Your doctor can suggest treatment, strategies and sometimes medication to help you function and to improve your symptoms. These treatment plans are usually personalised to your specific symptoms and needs and may change over time.

Current treatments for chronic fatigue have two key aspects: pacing and rest, and symptom management. Pacing and rest is about finding a level of activity that is sustainable for you, while symptom management involves ranking your symptoms and exploring ways to reduce them. 

Your GP may suggest you work with other health professionals (such as occupational therapists, physiotherapists or psychologists) to help you with these treatments. 

Living with a chronic illness like chronic fatigue can be really challenging as a young person, but with proper support you can improve your quality of life and reduce the severity of your symptoms.