Ehlers Danlos fatigue

Chronic fatigue is a symptom of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), and it shares signs with myalgic encephalomyeltis (ME) or chronic fatigue syndrome (CFS) (ME/CFS). Any people with chronic fatigue are likely to have undiagnosed EDS or HSD. A thorough evaluation and testing are required to rule out chronic fatigue in EDS and HSD. Fatigue can be caused by various factors, including trouble sleeping, long-term discomfort, and the body becoming accustomed to inactivity. Although there is no single medicine that can cure fatigue, several can help. Treatment for fatigue should concentrate on improving existing capacity, providing help, testing for new issues, and evaluating potential new therapies, in addition to managing symptoms.

A brief introduction

Fatigue is classified as long-term (chronic) if it lasts more than six months. Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME) (ME/CFS), is characterized by persistent fatigue and its effect on function and quality of life. Chronic fatigue is characterized as chronic or recurring fatigue that lasts longer than six months, is unrelated to other medical conditions and is not caused by continued exertion, is not significantly relieved by rest, and causes trouble engaging in normal activity levels. In hypermobile type Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder, fatigue may be a major symptom (HSD). Doctors can misdiagnose patients with ME/CFS who have hEDS or HSD, resulting in inadequate care. There are no large, high-quality trials looking at treating fatigue in people with EDS or HSD. Limited research or expert opinion supports the few journals that provide advice.

Fatigue and Its Causes

Things that make fatigue worse or better, sleep disturbances, stressors, and how the person with fatigue perceives these impacts on their wellbeing should be noted. Psychological wellbeing should be seen as both a cause and a consequence of a person’s health problems. Since exhaustion is such a common symptom of many diseases, it’s important to collect all relevant data and conduct a thorough physical examination.

Bad sleep quality, chronic pain, the body becoming accustomed to inactivity, complications associated with standing (fainting, low blood pressure, or high heart rate), digestive system issues (inability to absorb enough nutrients from food), nighttime urination, anxiety, and depression, headaches/migraines are all common causes of fatigue. Anything else may be causing chronic fatigue. Weight loss, enlarged lymph nodes (felt as lumps under the skin, usually in the abdomen, armpits, and groin), high temperature and night sweats, red swollen joints, skin color changes, and a later age of onset for the disorder are all signs of a severe, different condition that requires attention.

Care and Management

There is no one-size-fits-all method for determining fatigue. Another question could cause fatigue, and the effect of that problem is the problem. Questionnaires are one instrument used to investigate fatigue, but the knowledge gathered from patients tracking their everyday activities, general activity, and disability is even more important. Patients may use activity logs as a starting point for setting goals and measuring progress by achieving them. Personal electronic devices that assess activity are now usable, which can be useful for tracking physical exertion.

Treatment and Advice

The doctor should collaborate with the patient and their caregivers. For young people and those who are severely fatigued, family engagement is especially significant. The patient and their doctor should make decisions together about the causes, effects, and stages of fatigue management. Understanding the need to rule out any conditions from a diagnosis, accepting the reality and effect of the disease, setting reasonable development targets, and being prepared for setbacks are all examples of this. Exploring the various therapies and approaches available is another factor. By presenting medical evidence or responding to assessor queries, the doctor can support applications for assistance such as financial benefits and social care.

The focus of treatment is on resolving underlying problems. Medications for various ailments, as well as lifestyle improvements, can be included. Doctors and patients should be conscious that certain people do not satisfactorily respond to therapy.

Keeping your independence

Equipment and modifications (including, if necessary, a wheelchair) should be considered since they will aid in gaining independence and improving quality of life. Disruption in education or work can be disruptive, so it’s important to fix it as soon as possible. Following the patient’s approval, the doctor can assist by consulting on the job and educational health and any necessary changes or adaptations.

Methods of Treatment

The importance of sleep control, rest, and relaxation cannot be overstated. Sleep issues can exacerbate fatigue. Avoiding caffeine or nicotine near bedtime, maintaining tolerated activity levels throughout the day, avoiding big meals, and avoiding emotional upset/dwelling on issues before sleep are all good strategies. Calm music or reading can be beneficial, and screen-based habits such as watching TV should be avoided. The bed should be plush, and the room should be dark and quiet. Long-term discomfort and other medical issues that can disrupt sleep, such as a racing heart, breathing difficulties, and anxiety disorders, should be addressed.

Prescribed medications, pacing, and rest can be beneficial. Rest periods may be added, but there should be a degree of operation that prevents overexertion. Pain, sleep issues, and stress or anxiety can benefit from relaxation techniques. Patients must relax while exhausted rather than “pushing through” times of exhaustion. Progressive muscle relaxation (slowly tensing and relaxing each muscle group) and visualization are two common relaxation strategies (imagining a peaceful setting and then focus on controlled, relaxed breathing, slowing the heart rate). Massage, meditation, yoga, music, and art therapy are examples of other methods. Physical therapy and physical activity management are vital, but joint injuries can make this difficult. Physical therapies can help with function and everyday tasks and improve physical and mental health. The key goals are to prevent physical degradation while avoiding injury and to manage pain. A qualified therapist or teacher should provide guidance. Recommendations such as “exercise more” without supporting guidance are ineffective, and unstructured or unsupervised exercise, as well as a rapid increase in activity, can exacerbate symptoms. The current operation and objectives should determine it.

It’s possible to stop “boom and bust” cycles by planning and updating activities. It’s common for symptoms to worsen for a few days (e.g., stiffness and fatigue). Spreading out complex or challenging activities over time and preparing the day to allow for a range of exercise, rest, and sleep are examples of activity management. The patient may try to maintain or strengthen abilities and control their symptoms’ physical/emotional effect using a technique called cognitive-behavioral therapy (CBT). Fatigued people should be given an individualized program, but it should only be provided by someone who has received adequate CBT training.

What We Should Know

Clinical trials are needed to evaluate treatment effectiveness and to improve healthcare. It’s still unclear how psychological wellbeing affects care. The use of Graded Exercise Therapy (GET) is debatable. According to studies of people with the illness, GET causes ME/CFS symptoms to worsen. Each person suffering from fatigue should work closely with their physicians and therapists to determine the most effective and individualized therapies and goals. For certain cases, these may be gentle exercises built up over time if tolerated and then modified or stopped if not. Each person is unique.

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