Presented by LEAF
Fatigue can be described as a subjective unpleasant sensation of exhaustion with physical and mental components, which interferes with individuals’ ability to function at their normal capacity. It is a complex, multidimensional and poorly understood concept. Fatigue is a universal symptom experienced by nearly everyone in the general population, but the experience of fatigue in systemic lupus erythematosus seems to differ from ‘everyday tiredness’, as being more frequent, unpredictable and typically unresolved by rest.
Lupus patients describe fatigue as one of the most common and bothersome symptom of the disease. It is reported by 67% to 90% of patients, and is often severe in intensity (one third of patients).
Fatigue may impair several key aspects of the quality of life, with repercussions on both physical and mental health. In systemic lupus erythematosus, fatigue has a negative impact on emotions, cognition, work, activities of daily living, leisure activities, social activities and family activities. Notably, it can be a cause of stress due to being unable to accomplish certain tasks.
Fatigue is a highly multifactorial manifestation, caused by a complex interplay between disease itself, psychosocial, behavioral and personal factors.
Here are the most important factors that have been described as fatigue determinants in systemic lupus erythematosus (a * means that its association with fatigue remains controversial):
Here are some other common non-lupus related causes of fatigue:
Because fatigue is a subjective symptom, the best way to assess fatigue is to let YOU evaluate it, with the use of validated Patient Reported Outcomes (PROs).
The most commonly used ones are FACIT-F - which you completed in the LEAF survey - or the FSS (Fatigue Severity Scale) for the intensity of your fatigue, and the MFI (Multidimensional Fatigue Inventory) - which you also completed in the LEAF survey - for the characteristics of your fatigue.
You can use these scores multiple times, for a follow up of your fatigue intensity and characteristics over time.
At this time, there is no validated recommendation for the management of fatigue in systemic lupus erythematosus.
Since fatigue may be influenced by a variety of factors, the management of fatigue should rely upon a personalized approach, using pharmacological treatments and/or non pharmacological interventions.
Obvioulsy, management of fatigue predictors is important.
If your lupus is active, lupus treatments may have beneficial effects on your fatigue.
Vitamin D supplementation may help reducing fatigue, if you have vitamin D insufficiency.
Other pharmacological treatments, such as analgesics or antidepressants, may be useful, according to the fatigue predictors you have.
Physical activity is one of the most efficient intervention to improve fatigue – but it also leads to less pain interference, better physical function, cardiovascular risk reduction, bone strength amelioration, and even positive impact on the mood. Importantly, it is safe and well-tolerated for lupus patients.
Here are some other interventions that have proven their efficacity on reducing fatigue :
Getting better sleep habits, quitting smoking, or anxiety/stress/depression management can also diminish fatigue.
Anxiety is a feeling of worry, fear and uneasiness. In some situations, for example if you have health or work issues, it is normal to be anxious. But if your anxiety is severe, persistent, and affect your daily activities , you may suffer from an anxiety disorder. Anxiety is the main symptom of several anxiety disorders, including generalized anxiety disorder, phobias or post-traumatic stress disorder. Generalized anxiety disorder is the most frequent, and is characterized by an excessive anxiety, most days for several months, about a wide range of ordinary issues.
Some of the most frequent symptoms are: feeling worried, having difficulties sleeping or concentrating, feeling like there is a disconnection between your mind and body, increased heart beats, muscle tensions… You can also experience anxiety attacks, that are described as an overwhelming fear associated with heart palpitations, chest pain, rapid breathing, shaking, or sweating.
Many factors may play a role: brain biology, stressful environment, history of traumatic experiences, history of long-term painful disease, or even some health conditions…
Management of anxiety often relies upon a combination of therapies, including pharmacological treatment, psychotherapy, and lifestyle changes. Medications, typically antidepressants and sedatives, are not always necessary. Psychological therapies, such as cognitive behavioral therapy, psychoanalysis or talk therapies, are often very effective. Lifestyle changes can also help: regular physical activity, meditation, relaxation, yoga…
Stress is a subjective psychological and physical reaction to life events. When stress is persistent and associated with a feeling of being overwhelmed and unable to cope with the pressure, it can lead to anxiety and fatigue.
The goal is to be able to prevent unnecessary stress and effectively cope with the rest. Here are some simple tips:
There are no official recommendations about how much sleep you should get. Adults usually need around 8 hours of sleep each night for an optimal daytime functioning, although some people require more or less sleep.
A lot of different factors can influence the quality of your sleep, such as :
A poor quality of sleep can also be a symptom of sleep disorders, such as sleep apnea or restless legs syndrome.
Sleep apnea is a medical condition in which breathing repeatedly interrupts during the night, leading to fatigue, day-time drowsiness, and cardiovascular issues. It can be classified as obstructive or central sleep apnea. Obstructive sleep apnea is caused by a blockage of the airway during sleeping time, and is often associated with snoring or gasping for air while sleeping. Central sleep apnea is a rare disease defined by pauses in breathing due to a lack of proper signals from the brain to the muscles that control the respiratory efforts.
Restless legs syndrome is characterized by an irresistible urge to move the legs in the evening and during nighttime hours, usually because of an unpleasant sensation. It leads to a poor quality of sleep.
Sleep deprivation can be a cause of fatigue, day-time drowsiness, cognitive dysfunction such as memory or concentrations difficulties, slower reaction time that can lead to accidents, headache, irritability… It has also been associated with a higher risk of cardiovascular diseases.
First, you can talk about it to a healthcare professional that could evaluate the severity and the causes of your sleep issues and give you personalized management recommendations.
Sleeping drugs can be prescribed if insomnia is severe or persistant, but should be taken only for a short time, because some patients become addicted.
Here are some simple sleep habits that could help you getting a better night’s sleep :
The most frequent symptoms are:
There is not any specific cause, but depression is often influenced by risk factors, such as:
The management of depression is usually multidimensional and tailored for the patient. It includes:
Pain is usually caused by a specific injury or a medical condition, leading to some tissue lesions.
Patients feel pain when specific receptors called nociceptors detect tissue damage and transmit the information along the nerves and the spinal cord to the brain, that converts the signal into pain perception, thoughts, and emotions.
Sometimes, the nervous system (nerves, brain…) itself is damaged and dysfunctional, leading to amplification of pain perception, or pain signals without actual tissue lesion.
In patients with systemic lupus erythematosus, the inflammation associated with the disease activity is the most common cause of pain.
Pain can be classified into 3 major types of pain, depending on the physiopathological pathway leading to the pain perception:
Pain is one of the most frequent and bothersome symptom in systemic lupus.
In patients with systemic lupus, pain often results from the inflammation associated with the disease activity: arthralgia, myalgia, chest pain due to pericarditis or pleurisy, oral ulcers…
Fibromyalgia is another frequent cause of pain in patients with systemic lupus erythematosus, as it affects 6.2% to 30% of systemic lupus patients. Fibromyalgia is a disorder in which the brain amplifies the way it processes painful signals. It is characterized by chronic widespread musculoskeletal pain, often associated with fatigue and mood issues.
Your pain may also result from non-lupus related causes, such as non-traumatic facture, sprain, osteoarthritis, nerve compression, or any other condition.
Chronic pain lasts for over 3 months, and sometimes continues long after you recover from an injury or an illness.
It often interferes with the quality of life and has a lot of psychological, cognitive, and social consequences, such as fatigue, sleep disorders, concentration difficulties, or work issues. Complications of chronic pain also include anxiety, depression, or substance abuse disorders.
There are many treatment options to control pain. The aim is to find an effective and safe combination of therapies that works for you!
A wide range of drugs are used to manage pain. The pharmacologic management of pain is tailored for each patient, depending on the pain profile (acute, chronic, nociceptive, neuropathic, central sensitization…) and intensity.
Non-pharmacological options include physical therapies (physiotherapy, massages, physical activity…), specific techniques (acupuncture, transcutaneous nerve stimulation…), psychological interventions (cognitive behavioral therapies, hypnosis), or relaxation techniques (meditation, yoga…).
Here is some advice to cope with persistent pain: