"Chronic fatigue syndrome nearly ruined my life - 13 things I wish I'd known about the debilitating condition"
One woman explains how to spot the signs in yourself, plus simple steps for overcoming them.
Did you know that millions of people worldwide suffer from chronic fatigue syndrome symptoms? The answer is likely no, yet searches on the subject are rapidly rising, up 125% in the last year alone.
Heard of chronic fatigue syndrome but not sure exactly what it means? Lauren Windas was the same prior to developing the condition at university in 2012. While she was previously fit and healthy, following a viral infection, she become unable to get out of bed overnight and was left feeling completely exhausted by both mental and physical activity.
The syndrome results in debilitating symptoms including prolonged exhaustion and problems with the nervous, immune, and digestive systems.
More on her story later, but now, eleven years on, she's recovered from chronic fatigue syndrome, writing a book - Chronic Fatigue Syndrome: Your Route to Recovery- to help others who may be struggling.
There are a lot of you - as many as 24 million worldwide, according to epidemiologists at the Centers for Disease Control and Prevention. They also estimate that chronic fatigue syndrome affects 250,000 people in the UK and twice as many women as men - that said, problems with diagnosing the illness, as well as the surge in those suffering from long COVID (which shares some association with CFS) could mean that the number is a lot higher in reality.
It's one of the most complex chronic illnesses of modern times, yet the condition is still widely misunderstood. Here, the expert breaks down what signs to look out for, how to know if you have the condition, plus coping mechanisms that have helped her reach a full recovery.
Don't miss our guides to exhaustion symptoms and adrenal fatigue symptoms, while you're here.
Chronic fatigue syndrome symptoms can be easy to miss - 13 red flags
What is chronic fatigue syndrome?
First things first: a bit more about what the condition actually is. "Chronic Fatigue Syndrome (CFS) is a complex chronic illness that profoundly affects the lives of those who experience it," shares Windas, who's since trained as a nutritionist and naturopath to help with her own recovery.
"It affects multiple body systems, including the nervous, neuroendocrine, immune and digestive systems, with evidence that there is a dysregulation between them, helping to explain the complexity of some symptoms," she continues.
What are the chronic fatigue syndrome symptoms?
While we all tend to feel tired and even exhausted from time to time, chronic fatigue syndrome tends to adopt a fluctuating relapsing and remitting pattern which can look different from one sufferer to the next, shares Windas.
"While there is some variety in the symptoms themselves, too, the one that is broadly shared by the majority of chronic fatigue syndrome patients is called post-exertional malaise (PEM)," she goes on.
Essentially, PEM describes your existing symptoms - think fatigue, extreme brain fog, or increased sensitivity - worsening after even minor physical or mental exertion, trapping you in an endless cycle. According to the Centre for Disease Control and Prevention, it describes your symptoms getting worse a day or so after exertion and lasting for as long as a month.
Windas describes that chronic fatigue syndrome symptoms can seem endless, but the most common ones include:
- Fatigue
- Post-exertional malaise (PEM or ‘payback’)
- Cognitive impairment, including brain fog, memory problems and lapses in concentration
- Painful muscles and joints (myalgia)
- Gastrointestinal symptoms, such as those common in IBS (indigestion, bloating, gas, diarrhoea or constipation)
- Stress-related symptoms (anxiety symptoms, panic and difficulty tolerating stress)
- Food and alcohol intolerance
- Increased sensitivity to chemicals, smells, temperatures, sounds or light
- Heart palpitations
- Vertigo or dizziness
- Nausea
- Orthostatic intolerance (where symptoms become worse upon standing)
- Repeated flu-like symptoms (malaise, fever, recurrent sore throat).
It's important to note, here, that you don't need to have all the above symptoms to have chronic fatigue syndrome - you may just struggle with a few.
What causes chronic fatigue syndrome?
Sadly, at current doctors don't know what causes chronic fatigue syndrome. That said, one 2021 research paper suggested that chronic fatigue has a genetic component - the risk of having the condition was significantly higher in identical than in non-identical twins. "This indicates that disease risk may be increased due to genetic rather than environmental factors," explains Windas.
Similarly, an early 2020 Norwegian genetic study discovered that two versions of genes (called alleles) were linked with chronic fatigue. "Scientists found that these alleles genes were more common in chronic fatigue patients than in healthy people – a finding that points towards problems with the immune system in chronic fatigue patients," Windas expands.
Other factors, like infectious illnesses, traumatic events, and stressful life events are all believed to be triggers. "In my clinical experience, approximately 90 per cent of chronic fatigue syndrome patients report having had a recent infection," she shares. "I have also seen people who had glandular fever in childhood, then, years later, they experienced a significant traumatic and stressful event and then boom – chronic fatigue syndrome hit."
"Chronic fatigue syndrome nearly ruined my life - but recovery is possible."
Lauren first developed the debilitating condition while at university in 2012.
She'd suffered from a standard viral infection yet quickly went from being active to not being able to get out of bed.
Eleven years on, Windas has found changes to her diet, nutrition and lifestyle massively helped alleviate her symptoms. Not only that but she's retrained as a nutritionist and naturopath to help others in her clinic at ARDERE who are suffering from the same symptoms, bringing expertise from both a patient's and practitioner’s perspective.
"In April 2018, I was able to run the London Marathon in celebration of overcoming so many obstacles," she shares. "I hope that sharing my experience and knowledge can empower others to discover that recovery is possible."
"Being honest and pragmatic, any journey to recovery from chronic fatigue syndrome is a tricky one. There are days when you just feel like giving up – when you want to throw in the towel and stop trying because, well, what’s the point? That said, there are also days when you reach a huge milestone and you look back and think, Wow. I can’t believe I've come this far."
Lauren first found out she had chronic fatigue syndrome in 2012 - now, she helps others make a full recovery
Her advice? If you think you may be struggling, do book a doctor's appointment or a session with an expert who is qualified to advise you on the symptoms and recovery programme for chronic fatigue. A whole host of lifestyle changes can help, from what you eat, to how you workout.
"Recovery often seems like a wobbly rollercoaster ride of emotions and frequent setbacks. Work on practising acceptance. One of the greatest things you can do for yourself is to resist the resistance. Avoid fighting your symptoms, ride the waves and try to understand your triggers, so that you can move forwards."
"My mission is to raise awareness about chronic fatigue syndrome and to break the stigma that is a chronic illness," she shares. "I want to guide others on their own recovery journeys, inspire hope and provide solutions. I have spent the last decade reclaiming my own mind and body from the crippling effects of chronic fatigue syndrome."
How do doctors know if you have chronic fatigue syndrome?
Good question - and, as with many conditions, there is no one test or scan that can conclusively confirm you have chronic fatigue as of yet.
Instead, your doctor will likely listen to your symptoms and run tests to rule out other conditions. Do keep a journal of your symptoms, noting down days and times, to give them a clearer understanding of exactly the challenges you are facing. That way, they will be fully equipped and read up on what you've been experiencing and in turn, better able to advise you.
