Recovering from Chronic Fatigue Syndrome: A 9-Step Plan
Chronic fatigue syndrome (CFS) is a debilitating long-term illness, yet its cause remains a mystery. CFS is also known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Systemic exertion intolerance disease (SEID) is a new name that some health advocates insist more aptly describes the complex, aggregate nature of the disease’s cognitive, physical, and emotional components. According to a 2015 report published by the Institute of Medicine, chronic fatigue syndrome afflicts approximately 836,000 to 2.5 million Americans.
Chronic fatigue sufferers often experience extreme fatigue, pain, and sensory issues that can prevent them from performing simple daily tasks, like getting out of bed. Any level of physical or mental exertion can worsen symptoms which do not improve with rest and which can’t be explained by the presence of other ailments. Roughly one-third of chronic fatigue syndrome patients are either bedridden or housebound at some point during their illness.
Chronic fatigue syndrome has been described as a social illness, since it severely limits patients from participating in family, work, and other social activities. It is estimated that the United States economy loses $17 to $24 billion annually in incomes and medical costs, as a result.
What Causes Chronic Fatigue Syndrome?
There is no clear cause of CFS. Investigators suspect there may be more than one factor that triggers CFS. A compromised immune system may either be a cause or an effect of the illness, as progressively poor immunity to viral infections is a hallmark of the illness.
The Centers for Disease Control and Prevention (CDC) has suggested that chronic fatigue syndrome may be the end result of infectious disease. Human herpesvirus, Ross River virus (RRV), Epstein-Barr virus (EBV), and rubella are viruses that have been studied in relation to CFS. Mycoplasma pneumoniae and Coxiella burnetii are suspected bacterial triggers.
In addition to a weakened immune system and microbial infections, psychological distress and hormonal imbalances may further aggravate or initiate CFS, either jointly or separately.
Chronic Fatigue Risk Factors
Chronic fatigue syndrome is most prevalent among adults between the ages of 40 and 60 years old, but it can affect people of all ages, including children. Females are 2 to 4 times more likely than males to develop the illness. Some people may be genetically predisposed to CFS. Although the disease is diagnosed in Caucasians more than in any other racial group, it is estimated that 90% of people living with chronic fatigue syndrome are not diagnosed. Here are other factors that may increase the risk of developing ME/CFS:
- Environmental pollutants
- Recent or previous infectious disease
- Alcohol use
- Sleep disorders
- Certain medications (e.g., antihistamines)
Chronic Fatigue Symptoms
The effects of chronic fatigue syndrome on every individual are different. Chronic fatigue syndrome patients may look completely healthy. Symptoms of CFS can be quite unpredictable and can appear similar to those of other illnesses. In fact, one or more symptoms may trigger other CFS symptoms. Some people can exhibit many or a few typical CFS symptoms that may come and go, or that may change in severity. Chronic fatigue symptoms are likely to change over the course of the illness.
Most CFS sufferers will never recover their pre-disease health status and often find it difficult to maintain a job, go to school, or participate in social activities. Chronic fatigue syndrome limits a person’s ability to do simple tasks—like making a sandwich, standing up, or bathing—and can lead to severe impairment lasting for many years.
Chronic fatigue syndrome symptoms include:
- Sleep problems (unrefreshed feeling after sleep, chronic insomnia)
- Extreme fatigue
- Frequent headaches and dizziness
- Cognitive dysfunction (memory loss, concentration difficulties)
- Pain (muscle pain, multiple joint pain with inflammation, redness, or laxity)
- Poor immunity (inability to heal from infections, frequent sore throat)
- Gastrointestinal issues (lack of appetite, nausea especially in the morning, abdominal pain, heartburn, feeling “full” after eating very little food, bloating, aversions to certain foods, irritable bowel syndrome)
- Lymphadenopathy (tender, swollen, or enlarged lymph nodes, especially of the neck and armpit regions)
- Gynecological problems
- Allergies or serious intolerances to medications, toxins, or environmental elements
- Nervous system abnormalities
Chronic fatigue syndrome usually induces a few keystone conditions. Orthostatic intolerance (OI) describes how a patient’s symptoms worsen while standing upright; however, symptoms tend to improve (but oftentimes not completely) once the person lies down again.
Post-exertional malaise (PEM) occurs when a patient attempts to perform as much as they want or need to, but their symptoms worsen as a result. PEM can occur 12 to 48 hours after physical or mental activity and the effects can last for days or weeks.
Chronic Fatigue Diagnosis
Chronic fatigue syndrome is a poorly understood disease, and its symptoms are often mistaken for those of other illnesses. CFS sufferers are strongly encouraged not to self-diagnose. There are no specific laboratory tests to verify chronic fatigue syndrome, making the disease difficult to diagnose. Nevertheless, a doctor should be able to eliminate the possibility of other illnesses based on the rigorous assessment of a patient’s symptoms, review of a patient’s medical history, review of a patient’s family history, a medical exam, and a psychological evaluation.
Other illnesses have similar symptoms to chronic fatigue syndrome. Illnesses that exhibit some symptoms similar to chronic fatigue syndrome include: multiple sclerosis, lupus, mononucleosis, and fibromyalgia. Your doctor can rule out these other medical conditions with urine and blood tests.
Doctors will investigate the severity and frequency of symptoms, as well as how these symptoms impact a patient’s daily life in order to determine a diagnosis of CFS. Patients who have experienced at least four of the aforementioned symptoms concurrently for more than 6 months are considered strong candidates for chronic fatigue syndrome.
Chronic Fatigue Recovery
There is no direct cure for chronic fatigue syndrome, but some symptoms can be treated or managed with proper medical supervision. Effectively managing CFS is a team effort. A network of physicians, mental health professionals, rehabilitation specialists, therapists, counselors, family members, and friends all working together is the best way to accommodate CFS patients’ care needs. Family members and friends, especially, should maintain a high degree of vigilance and be prepared to take over a patient’s immediate needs whenever necessary.
Although challenging, steps to recovery are incremental and should focus on improving a patient’s quality of life, as well as their perception of such. All involved, including the patient, should have a tolerant outlook for the months and years ahead. Each person may benefit from or suffer from different types of chronic fatigue treatment in a variety of ways, which is why self-care measures should be thoroughly vetted and revised when needed.
The following are 9 recommended steps to chronic fatigue recovery.
1. Identify Safe Healing Spaces
Patients who are able to venture outside of home should do so with the understanding that there are safe spaces available to them in the event they need to rest. Identify these spaces ahead of time inside the homes of friends and family members, at work, at community centers, and in places of worship. Retreat spaces in the patient’s home should be designated so that patients are assured privacy and peace. These spaces can be used for a number of relaxation rituals that include listening to music and engaging in mindfulness-based cognitive therapy.
2. Educate All Participants
Education is a crucial aspect of managing CFS symptoms. Patient’s who maintain a clear and logical understanding of their illness will be in better mental condition to encourage their own healing. A well-informed team is better able to take over a patient’s duties and tend to a patient’s concerns if it knows what to expect. Doctors can begin the education process by talking with CFS patients and team members about what they already know concerning chronic fatigue syndrome, while dispelling any myths about the illness and promoting healthy expectations regarding outcomes.
3. Regularly Monitor and Discuss Specific Symptoms
A patient’s care team can help foster a synergistic approach to managing a patient’s symptoms through effective communication. Seek health care professionals and counselors who are well-informed about chronic fatigue syndrome and encourage these professionals to speak with each other about best treatment options.
A patient should feel comfortable expressing any fears or concerns about their illness or the care they are receiving, so it is important that all involved be sensitive to a patient’s perceptions. Often, a patient may feel they are failing at treatment if they do not see noticeable improvements. Skilled professionals should master the art of revising treatment methods that address consistent issues. Pacing mental and physical activities can be effective when journaling a patient’s progress.
4. Develop a Treatment Strategy
Address symptoms that may hinder the improvement of other symptoms. For example, patients who experience sleep disturbances or chronic pain are likely to suffer profound emotional distress. Identify solvable problems that can remedy the sleep and pain issues to alleviate the patient’s emotional burden.
Treatment strategies should include setting and recording goals, as well as time management methods. Setting and meeting even minor constructive mental or physical goals can be intellectually rewarding. Developing a daily routine is especially helpful for housebound patients, giving them something to look forward to. Instill a rewards system for achievements, especially for younger CFS patients who may feel excluded from more conventional activities.
5. Adhere to a Strict Sleep Regimen
Discourage napping during the day so that it does not affect a patient’s sleep at night. Family members may try sleeping and waking at the same times as chronic fatigue syndrome patients so that patients do not feel like a burden. In any case, patients should aim to go to bed at the same time each night and wake up naturally around the same time each morning.
6. Engage in Physical and Cognitive Exercises Incrementally
Assess a patient’s ability to sit upright first before taking on any level of physical or mental activity. Some patients may feel more comfortable engaging in these activities while lying down. Patients can practice moving their limbs while supine and stationary, or they can listen to and learn from audible literature and lessons through digital devices.
Higher functioning patients should not take on too much even if they feel okay during and after the activity. Symptoms may erupt hours or days later causing the patient to feel worse. This cycle is more widely known as “push-and-crash,” and can lead to quite serious complications. Pacing activities involves engaging in activities for short periods of time, then resting for adequate periods of time.
7. Adhere to a Sound Diet
Eating small meals throughout the day can encourage a healthy appetite and help combat insomnia. Avoid consuming too many fluids with meals to discourage bloating. Eating mild foods can help relieve gastrointestinal issues. Water is the ideal beverage. Infuse water with cucumbers and citrus fruits to improve taste and electrolytes. Alcohol and too much caffeine can worsen chronic fatigue syndrome symptoms. Patients with heart disease may need to closely monitor their salt intake.
8. Manage Pain, Depression, Infections, and Fatigue Effectively
Over-the-counter medications, like aspirin or acetaminophen, are rarely effective when managing CFS pain symptoms. Doctors may prescribe pharmaceuticals, such as dexamphetamine to address fatigue or methylphenidate for concentration issues. Selective serotonin reuptake inhibitors can address depression symptoms, while anticonvulsants are for widespread pain.
Work with physicians and specialists to increase or decrease dosage when necessary, but never completely stop or start taking any medications without a doctor’s supervision, even if patients have taken this medication in the past. Intravenous immunoglobulin (IVIG) has been used to address chronic infections, but this treatment is not scientifically verified and can be costly. Antibiotics are widely prescribed to treat infections.
9. Use Vitamins and Supplements
Taking vitamins and supplements, such as a complete essential amino acid blend, can be a safe and easy way to improve the symptoms of chronic fatigue syndrome and make daily activities easier to manage. Be sure to consult with your doctor before taking vitamins or supplements since they can interfere with current medications. Also, excess supplementation can irritate CFS symptoms.
- Vitamin D is especially helpful for patients who lack sunlight. It can help relieve headache and pain symptoms if taken in proper doses.
- Magnesium can encourage more restful sleep. Take with apple juice for better absorption before bedtime.
- Probiotics can counter gastrointestinal issues, especially if patients take antibiotics to treat frequent infections.
- Vitamin B12 aids brain function and helps to increase energy levels.
- Amino acid L-carnitine and its derivative acyl-L-carnitines were shown to reduce physical and mental fatigue, while improving cognitive status and physical functions in patients with chronic fatigue syndrome. An essential amino acid supplement can also help provide energy, especially during exercise.
Before starting any steps to recovery from chronic fatigue syndrome, it is important to work with your health care providers, who can help cater a treatment plan that best suits your specific needs. Many treatments that exist are not scientifically backed, may be costly, and may cause further harm.