Fatigue means so much more than just being tired. It is an overwhelming feeling of both physical and mental exhaustion. Fatigue can be categorized as:
Fatigue is a common and often underestimated symptom of the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). Many people with EDS and HSD live with chronic fatigue, which can significantly affect their quality of life. There are many causes of fatigue in EDS and HSD, including:
Many people with EDS and HSD have issues falling asleep, staying asleep, and getting refreshing sleep. Poor sleep quality can contribute to feelings of tiredness.
Chronic pain is one of the most common symptoms of EDS and HSD. Chronic pain is strongly associated with fatigue. Chronic pain also contributes to poor sleep quality in people with EDS and HSD.
EDS and HSD can make it challenging to stay active. Deconditioning refers to a reduction of fitness, strength, and mobility that can occur during periods of inactivity. Deconditioning can make a person’s symptoms worse and can make it even harder to function and be active.
Dysautonomia is a group of disorders that affect the autonomic nervous system. Many people with EDS or HSD also have a type of dysautonomia, such as postural orthostatic tachycardia syndrome (POTS) or orthostatic hypotension (OH). The autonomic nervous system regulates bodily processes by balancing the opposing actions of the parasympathetic and sympathetic nervous systems. If the autonomic nervous system does not function properly, a person may be in a constant state of “fight or flight” mode. It may be difficult to switch over to the “rest and digest” state which allows the body to fall asleep, stay asleep, and feel refreshed from sleep.
Some people with EDS and HSD have bladder and bowel issues which can cause sleep disturbances.
People with EDS and HSD have higher rates of psychological conditions, such as anxiety, depression, and ADHD. These conditions can interfere with sleep and contribute to fatigue.
Nutritional deficiencies can contribute to fatigue because nutrients play important roles in energy production, metabolism, and other processes. When a person is not absorbing enough essential nutrients, it can interfere with these bodily processes and cause a person to feel tired.
Medications taken to manage symptoms of EDS and HSD can impact sleep and may contribute to tiredness.
Any one of these factors alone can cause fatigue. Often, more than one is present and each of these tends to aggravate the others. For example, chronic pain can make it difficult to exercise, which can lead to deconditioning. Deconditioning can worsen depression when people cannot do the activities that they used to be able to do.
Management of fatigue should address the underlying causes. This may include:
Lifestyle changes that can be helpful include:
Fatigue can mean that a person does not have the energy to do everything they would like to do. Pacing helps people conserve their limited energy and can allow them to participate in activities that are important to them. By taking breaks and not doing too much at once, people with fatigue can spread their energy throughout the day. Pacing can help a person become more active and reduce fatigue.
Movement and exercise are important and can improve physical, psychological, and cognitive function. However, exercise can be challenging for people with EDS and HSD due to chronic pain, fatigue, and other symptoms. Too much or the wrong type of exercise can make a person’s symptoms worse, so it is best for each person to work with a physical therapist to develop an exercise plan that meets their needs. Regular movement and exercise can help people with EDS and HSD become more active and helps prevent deconditioning. Extended periods of inactivity should be avoided.
Changing sleep patterns and improving sleep hygiene can help people with fatigue get better rest. Ways to improve sleep hygiene include:
Relaxation techniques, such as meditation, progressive muscle relaxation, and deep breathing exercises, can be helpful for managing fatigue. Relaxation techniques can help reduce stress, improve sleep, enhance mood, increase concentration, and relieve pain and other symptoms.
Cognitive behavioral therapy (CBT) is a type of talk therapy that teaches coping skills for dealing with problems. CBT can help a person identify and change any thought patterns and behaviors that contribute to fatigue.
Sunlight helps regulate the sleep cycle. Exposure to sunlight during the day tells your body it is daytime, which helps you feel more alert and awake during the day. Sunlight also helps regulate the production of melatonin, which plays an important role in the sleep cycle. Sun exposure also promotes the production of vitamin D, which can help improve fatigue.
Wheelchairs, splints, and supports may be considered as part of the management plan for people with severe fatigue. Adaptive equipment can help people maintain independence and allow them to participate in activities that they would otherwise be unable to. It is important to continue to perform appropriate exercise alongside the use of wheelchairs and other supports to ensure that the muscles continue to be used so their strength is maintained.
Living with a chronic illness can be isolating. Connecting with others can help people with EDS and HSD avoid isolation, which may amplify pain and fatigue. It is important to maintain social connections with your loved ones. It may also help to connect with other people who understand what it is like to live with EDS and HSD. You can connect with other people with EDS and HSD through virtual support groups, local support groups, and online communities.
Sometimes medications and supplements are used to help manage fatigue, but there are not medications that treat or cure fatigue specifically. It often takes trial and error to find a medication or combination of medications that works best for a person.
Stimulants should generally be avoided in people with fatigue unless there is a coexisting attention deficit disorder or if they are needed to keep the heart rate or blood pressure up.
Chronic fatigue can impact every aspect of life, including work and school. Asking for school or workplace accommodations early can save a person so much stress and frustration.
School and workplace accommodations for chronic fatigue may include:
There is no one proven diet or supplement that improves fatigue. Responses to dietary changes vary from person to person. Some people feel better on gluten-free diets, some on dairy-free diets, some on low-carbohydrate diets, some on low-FODMAP diets, and some on low-histamine diets. It is best to work with a registered nutritionist or doctor when making dietary changes. Dietary changes that may be helpful include:
