Fatigue Syndrome: Tired despite getting enough sleep? Then this could be the reason

Symptoms include extreme fatigue, brain fog, insomnia, and pain.
Brian Cassella/Chicago Tribune/Tribune News Service via Getty Images

Chronic Fatigue Syndrome, ME/CFS for short, has not been researched very well to date and is therefore difficult to diagnose.

A quarter of those affected have difficulty leaving their homes due to severe pain and fatigue.

The causes of ME/CFS are still unknown. There is also no specific therapy. However, changes in everyday life can help to better control the symptoms.

Myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), is a serious condition that causes extreme tiredness and fatigue. However, it cannot be cured with sleep and rest. To this day, the disease remains a mystery to medical professionals. So far, scientists have assumed that ME/CFS is both a neurological and immune system-dependent disease. It is also believed that the disease is often triggered by a seemingly unrelated bacterial or viral infection, making diagnosis difficult.

There are still no approved drugs in the fight against fatigue syndrome worldwide. The treating physicians would therefore adhere to a protocol based on adapting the lifestyle of those affected to the disease in order to improve their quality of life, says Emily Taylor. She is Vice President of Advocacy and Engagement at Solve ME/CFS.

Learn more about ME/CFS and the symptoms of the disease here.


The symptoms

People suffering from ME/CFS often have trouble completing everyday tasks. Even activities such as working or cooking are difficult for those affected because they do not feel able to do so due to the permanent tiredness. In addition, almost 25 percent of those affected cannot leave their homes. The result is a very poor quality of life.

Also, people with CFS would experience symptoms beyond just fatigue, says Medhat Mikhael, pain management specialist and medical director of the nonsurgical program at Spine Health Center at MemorialCare Orange Coast Medical Center.

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These symptoms may come and go, and sometimes even get worse over time:

  • Extreme tiredness, even after adequate sleep
  • Trouble sleeping, including insomnia, regardless of how tired you are
  • Brain fog and trouble thinking or concentrating clearly
  • Pain, including headache and joint pain
  • Orthostatic intolerance, which can cause dizziness, weakness, or fainting when standing or sitting
  • Other symptoms that worsen after physical or mental activity

The diagnosis

The German Society for ME/CFS estimates that there are almost 250,000 people affected throughout Germany, although the number of unreported cases can be far higher. Around 17 million people worldwide suffer from pathological fatigue. Since the diagnosis, unlike other diseases, is relatively difficult to make, researchers assume a higher number. To date, there is no definitive test for ME/CFS, so the symptoms are often confused with other autoimmune diseases, mental health problems, or disorders of the nervous system. They include:

  • Fibromyalgia
  • Dysautonomie
  • endometriosis
  • Arthritis
  • depressions
  • fears

Also, doctors are often unfamiliar with ME/CFS, making it difficult for patients to receive a diagnosis, says Jacob Teitelbaum, an internist at Vitality101. “CFS is no more a mental illness than cancer,” he says. “Unfortunately, over the past century, some doctors have had a habit of telling people, ‘I don’t know what’s wrong with you, so you’re crazy.'” Teitelbaum adds that this “prolongs treatment and creates deep anxiety can trigger”.


causes

Because ME/CFS is so complex to diagnose, there is little information about who is most affected. The German Society for ME/CFS states that while any age group can be equally affected, adolescents and young adults up to their mid-thirties are said to be the most vulnerable.

However, the numbers become more striking when you look more closely at the genders affected. It is noticeable that women suffer from ME/CFS much more often, namely three times as much, than men. Additional research shows that people diagnosed with ME/CFS have recently contracted an infection. Therefore, infections are considered to be one of the causes. In addition, childhood trauma is seen as another risk factor.

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Although the cause and mechanism of ME/CFS are not fully understood, Teitelbaum says research suggests that sufferers may have had a “circuit breaker” triggered in their hypothalamus. This area of ​​the brain produces hormones that control vital bodily functions like heart rate and hunger, sex drive, and sleep.

Note: Individuals suffering from Long-Covid could develop symptoms resembling ME/CFS disease. 46 percent of those affected meet the requirements for this. However, medical professionals are still trying to explore a potential connection.

Keep symptoms under control

There is still no cure for ME/CFS, but some manage to control symptoms to a large extent through lifestyle changes. However, you should be aware that the fight against ME/CFS is a long road of trial and error. Doctors usually try to combat the most noticeable symptoms. These include:

Post-exertional malaise

Post-exertional malaise (PEM) occurs when symptoms worsen with even minimal physical or mental exertion. To get PEM under control, doctors recommend slowing down. The US Department of Health describes this as learning to balance rest and activity to avoid flare-ups of PEM.

Important: Exercising can make ME/CFS symptoms worse, so you should always consult your doctor first. This will ensure that you don’t exert yourself too much and trigger other symptoms.

sleep disorders

Sleep disorders are very common among those affected. The first step to fighting insomnia is establishing a healthy sleep routine. You should learn to always go to bed at the same time and not use any media (cell phone, TV, laptop) before you go to sleep.

Treatments for insomnia, including cognitive behavioral therapy, short-term sleep medication, and mindfulness can also help. Treating other symptoms, such as pain, can help people fall asleep and stay asleep.

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Pains

People suffering from ME/CFS often complain of pain affecting the entire body, but particularly the joints. Doctors often try to help those affected to fight pain through activities such as yoga or stretching exercises. Methods such as acupuncture or massages are also tried out. Well-known medications such as aspirin or ibuprofen can also help to relieve the pain.

However, if the pain gets worse, your doctor can refer you to a pain therapist. These can help you to change your everyday life in a way that makes it easier for you to deal with the pain.


Stress, anxiety and mental health

Individuals suffering from ME/CFS are more likely to develop problems such as mood swings, anxiety or depression. Scientists are still trying to figure out whether a biological mechanism plays a role or whether the general challenge people feel when performing simple tasks makes them more susceptible to depression.

Treatments for mental health issues associated with ME/CFS include mindfulness and tranquilizing therapies, as well as medication for depression and anxiety.


General wellbeing

Sufferers of ME/CFS also report that a generally healthy lifestyle has helped them. This includes a balanced diet and more conscious care of mental health.

Teitelbaum recommends the SHINE protocol. This was designed to help people with ME/CFS and Fibromyalgia. It is a comprehensive package of lifestyle adjustments and medical interventions:

  • Sleep: The protocol recommends getting at least 8-9 hours of sleep a day to help combat insomnia, with medication if needed.
  • Hormone: The protocol tries to stabilize the hormones, and medication to treat thyroid disorders should also help.
  • Infections: The protocol is designed to detect, control and prevent infections ranging from yeast infections to viral diseases.
  • Nutrition: This is about a balanced diet plan to combat potential nutrient deficiencies.
  • Sport: After about ten weeks in the program, the patients should slowly increase their sporting activities under observation.
Note: A small 2011 study that Teitelbaum led found that people with ME/CFS and fibromyalgia had better outcomes after following the protocol. The results held up when the researchers followed up almost two years later.

Our tip

Chronic Fatigue Syndrome is a condition that causes extreme fatigue, mental derangement, and general aches and pains throughout the body.

If you think you have ME/CFS, or if you were recently diagnosed, finding a doctor who is knowledgeable about CFS can improve your outlook, Teilbaum said. “It’s a complex disease and you need a doctor who understands it,” he says.

This article was translated from English by Meltem Sertatas. You can find the original text here.

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