Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a chronic condition characterized by debilitating fatigue and an array of other symptoms. It is estimated by the Canadian Community Health Survey (2005) that at least three percent of Canadians have been diagnosed with the condition and many more cases likely go undiagnosed. CFS/ME is far more prevalent among women, and usually affects people in their 40s and 50s but can affect a person of any age.
Doctors and scientists are not sure what causes chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), but the illness often develops following a cold or flu. Genetic studies have been done that show that it is a physical illness, and that people who have close family members who have CFS/ME are at greater risk for developing the illness.
Five years ago, Irene was an active 35-year-old woman who worked full-time as an accountant for a small business, tended to her two children and enjoyed jogging. Others described her as being “full of energy” and always “on the go.”
One day, Irene came down with a bad case of the flu. Two weeks later, she felt a little better, but was still tired and achy. She decided that she would go to work as she thought that getting “up and out” would make her feel better.
During the short walk from the subway to her office, she started to get a headache and feel extremely tired. After about an hour at the office, while reading her email, Irene could no longer focus on the words, and reading became impossible. She experienced an overwhelming fatigue that “hit her like a brick.” Irene was driven home by a colleague who later told others, “I practically had to carry her to the car.”
Upon arriving home, Irene was bedridden for two months, barely able to get up the energy to brush her teeth. She had aches and pains all over, and felt hot and cold intermittently. She tried to watch TV, but could not concentrate on what people were saying. She felt totally debilitated, helpless and frightened.
Very slowly, Irene regained some of her energy, but was unable to ride a bike with her children, do routine household chores, work for more than one hour per day, or even socialize without experiencing severe fatigue afterward.
This was completely devastating to Irene, as she had been so full of energy in the past, and had enjoyed her work, playing with her children and socializing with her family and friends. She felt extremely guilty, as she was no longer contributing to the household income and her husband had to take over many of the household and childcare duties. This was putting a strain on their marriage.
After seeing many doctors, Irene was diagnosed with CFS/ME.
Eventually, with the help of her doctor and a CFS/ME support group, she learned more about the illness. She learned how to take care of herself by listening to her body’s needs. She learned to pace herself, to avoid “crashing” after she exerted herself. She learned to cope with the grief of losing the life she had once had, to reduce her stress and relax, and to get the help she needed with household tasks, such as cooking and cleaning. These all helped her cope with her illness and allowed her body to start healing.
As her health improved, Irene rediscovered her love of drawing, which helped her to relax. As her energy level increased, she was able to do more activities. As Irene’s husband learned to understand and accept his wife’s illness, their relationship improved.
Fatigue
The main symptom of CFS/ME is fatigue. The fatigue of CFS/ME is different from the fatigue that non-affected people experience. Usually when we overexert ourselves, we feel “tired” for a short period and feel refreshed after a period of relaxation or sleep. With CFS/ME, the fatigue is severe. The “malaise” felt by individuals with CFS/ME following exercise, or even routine activities, has been compared to the pain, fatigue and discomfort associated with a severe flu. This post-exertional malaise usually lasts for 24 hours or more. It is often accompanied by decreased mental functioning. For example, a person with CFS/ME may have to rest in bed for three hours to recover after shopping for half an hour or making a bowl of soup.
The fatigue is often severe enough to significantly reduce a person’s ability to perform regular activities. It decreases a person’s activity level to at least 50 percent. This affects all aspects of a patient’s life – his or her social life, work life, time with family and friends.
Sleep Dysfunction
People with CFS/ME often experience various types of sleep disturbance, such as insomnia, difficulty getting to sleep, waking up frequently and a reduced amount of deep sleep. After sleeping, they may wake up feeling as tired as they did before going to bed.
Pain
Pain is felt throughout the body. The pain can be a sharp, shooting, burning or aching pain in the muscles. Approximately 75 percent of people with CFS/ME experience pain in the tender points associated with fibromyalgia; however, the pain is not limited to these tender points. Joints are often sore, but not swollen. Many people also develop new headaches with the illness, including tension headaches, pressure headaches and migraines. Pain can interfere with a person’s sleep.
Brain Function Problems
Perhaps the most disturbing aspect of CFS/ME is the loss of cognitive function that people experience, particularly when they have overextended themselves. People with CFS/ME often experience “brain fog” or confusion. They may have difficulty concentrating, process information more slowly, grope for words and have difficulty multi-tasking. They may have short-term memory problems, to the point where they forget about plans they made, where they parked the car, or what they just read in a book.
Other common brain function symptoms include loss of depth perception, blurred vision, loss of balance and increased sensitivity to “sensory stimuli,” such as light, sound and odours. People with CFS/ME are more easily “overloaded” by sensory stimuli, too much information, emotional stress or physical effort. They may not be able to block out background noise to listen to conversations, while at a party, for example. This “overload” phenomenon may lead to a “crash,” where the person becomes immobilized by physical and mental fatigue. The cognitive symptoms become worse as the person becomes more fatigued and anxious.
Problems with Automatic Body Functioning (Autonomic Nervous System)
The autonomic nervous system regulates key functions in our bodies that occur “automatically,” without us thinking about them. This includes, for example, keeping our heart beating, our blood pressure regulated, our stomach and intestines functioning properly and our lungs working. A variety of symptoms result when this system is affected by CFS/ME.
Many people with CFS experience a drop in blood pressure either when standing up or after standing for about 10 minutes. This can cause light-headedness, dizziness, heart palpitations, shortness of breath and sweating.
Other common symptoms may include diarrhea, constipation, nausea, gas and bloating.
Hormonal and Endocrine Symptoms
People with CFS/ME may have trouble maintaining a steady body temperature, and feel cold all the time or feel hot and feverish.
Other symptoms may include weight loss or noticeable weight gain. Some people with CFS/ME “crash” – experience a period of immobilizing physical and/or mental fatigue. This often happens when a person is “overloaded” physically, mentally or emotionally.
Virus-Like Symptoms
Some people with CFS have virus-like symptoms. They feel “unwell” and feverish, have a sore throat and swollen lymph glands. These symptoms usually occur at the onset of the illness but may also occur later on and be triggered by a “crash” or overdoing activities.
Chemical Sensitivities/Intolerances: Other common symptoms include chemical sensitivities/intolerances, for example, to perfumes, cigarette smoke, diesel fuel, certain foods or medications.
The symptoms of CFS/ME tend to ebb and flow. Symptoms worsen with physical or mental exertion and increased stress, and usually improve as individuals learn to pace themselves and cope with their illness. Also, symptoms tend to be worse at the beginning of the illness.
Some people with mild CFS/ME recover within one to two years, and do not have a relapse if they learn to respect the physical limitations of their bodies. Others with severe CFS/ME live with CFS for several years or, in some cases, for the rest of their lives. CFS/ME can be mild, moderate or severely disabling.
There are no specific tests used to diagnose chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). For a doctor to diagnose the syndrome, most of the signs and symptoms described below must be present and other possible causes ruled out.
The seven diagnostic criteria of CFS/ME include:
- Fatigue – Unexplained, persistent mental and physical fatigue that substantially reduces your activities.
- Malaise or fatigue following exertion – After physical or mental exertion, an abnormally slow recovery time of at least 24 hours and an increase in other symptoms.
- Sleep dysfunction*– Sleep does not make you feel refreshed or diminish your fatigue. You may wake up feeling tired even after sleeping for 10 to 12 hours.
- Pain* – In the muscles and joints, and unusual, severe headaches.
- Brain function problems – You may have trouble concentrating, thinking clearly, remembering things that occurred recently or multi-tasking.
- At least one symptom from two of the following three categories:
- the body’s self regulation system (autonomic nervous system) – symptoms such as light-headedness, extreme pallor, nausea, irritable bowel syndrome, urinary frequency, bladder dysfunction, heart palpitations.
- the hormonal system (neuroendocrine system) – symptoms such as low body temperature, sweating episodes, recurrent feelings of feverishness and cold extremities, intolerance of extreme heat and cold, marked weight change.
- the immune system – symptoms include tender lymph glands, recurrent sore throat, recurrent flu-like symptoms, general malaise, new sensitivities to foods, medications or chemicals.
- The illness is chronic – The illness has been present for at least six months in adults and three months in children. The onset of the illness is usually sudden, but can be gradual.
*A small percentage of patients experience no pain or sleep problems, but in these cases, no diagnosis except CFS/ME fits.
Ruling Out Other Conditions
Before diagnosing CFS/ME, your doctor must rule out other illnesses and conditions that could explain your fatigue and other symptoms, such as anemia, diabetes, an under-active thyroid gland, HIV, hepatitis, cancer, multiple sclerosis or arthritis. Your doctor may recommend various tests, including blood tests, to rule out such illnesses.
Finding a Doctor
Many people find that it can be difficult to find a doctor that has a good working knowledge of CFS/ME. Ask your family doctor to help you with your illness. Your family doctor may refer you to certain specialists, to rule out other illnesses. Your family doctor can act as your guide, helping you determine the changes you need to make to your life, using the SEEDS of health approach:
- Support
- Exercise/pacing of activities
- Environmental assessment
- Diet/drugs
- Sleep
This approach will help you manage your reduced energy level, pace your activities, improve your diet and sleep habits, establish an exercise routine, set appropriate work patterns, avoid exposure to chemical contaminants and improve your quality of life.
Your family doctor may also want to refer you to the Environmental Health Clinic at Women’s College Hospital. This clinic is the only one in Ontario that specializes in the assessment of CFS/ME. Some support groups, such as the M.E. Association of Ontario and the Canadian National ME/FM Action Network, can also recommend doctors that work well with patients who have CFS/ME.
Although there is no cure for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), there are things you can do to optimize your quality of life – to improve your energy level and brain functioning, sleep better, reduce your pain and minimize your other symptoms.
Pace yourself. Rest before and after activities. Alternate between activities that use energy, such as physical exercise and mental concentration, and those that help conserve your energy, such as sleep, meditation and relaxation exercises. The goal is to be as active as possible but avoid crashing. Listening to your body, moderating your activity level, eating a well-balanced, nutritious diet, and emotional support will all help manage your symptoms and improve your sense of well-being.
Although there is no cure for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), there are things you can do to optimize your quality of life – to improve your energy level and brain functioning, sleep better, reduce your pain and minimize your other symptoms.
Pace yourself. Rest before and after activities. Alternate between activities that use energy, such as physical exercise and mental concentration, and those that help conserve your energy, such as sleep, meditation and relaxation exercises. The goal is to be as active as possible but avoid crashing. Listening to your body, moderating your activity level, eating a well-balanced, nutritious diet, and emotional support will all help manage your symptoms and improve your sense of well-being.
Pacing Yourself
For people living with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), events that would not normally cause stress, such as a short walk or a long phone call, can act as stressors. These stressors can lead to fatigue, either immediately or the next day. This, in turn, can provoke feelings of discouragement, frustration, anger and anxiety. Meanwhile, it may seem as if the things that need to get done are “piling up.” Added to this is the burden of financial, marital and work-related problems that may result from the inability to perform daily tasks or partake fully in a relationship. A vicious cycle can result, with increased frustration, stress and fatigue. A good way to break this cycle is to become aware of your particular stressors and the effect that they have on your energy level.
The best way to do this is to keep a diary, or activity log, of your activities throughout the day, including mental activities, and rate your energy level, (by giving it a score from 1 to 10). You will notice that you have higher and lower levels of energy throughout the day as well as “high-,” “moderate-” and “low-” energy days. You will see patterns emerge, indicating the activities that produce fatigue and those that conserve your energy. This will help you pace yourself.
Pacing yourself means living one day at a time, setting modest goals, being flexible and doing no more than what your energy will allow. If you look at your activity log and notice that late morning is usually a time of day when you have more energy, then you may want to schedule your “high-energy” activities for that time of day. This could be a physical activity, such as exercising, doing light housework or gardening; a mental activity, such as reading, studying or paying the bills; or an activity that includes both mental and physical activity, such as planning a meal, making a grocery list and shopping.
By listening to your body and observing how it responds to different activities, you will be able to identify how much time you can spend doing a “high-energy” activity without feeling fatigued. Learn to think of your symptoms as messengers – letting you know it is time to slow down or stop and rest. For example, if you know that grocery shopping usually causes you to “crash,” then break it up over a few days by planning the meals one day, creating a shopping list the next and doing the shopping the following day.
If you wake up very tired and achy on the “shopping” day, if possible, ask a family member or a friend if they can do it for you, or have the groceries delivered. Many grocery stores now offer this service. Keep your freezer stocked with some frozen meals you have bought or made ahead of time so that if you can’t go grocery shopping, you don’t miss any meals because you ran out of food.
Allow for a period of rest and relaxation before and after the activities that use energy. Think of rest and relaxation as “energy-conserving” activities, rather than just a break or pause between other things that you “need to do.” It’s OK if the rest and relaxation are your main activities for the day, if you are very tired either physically or mentally. Your body is telling you something – listen to it!
Pacing yourself also means doing things that you enjoy. Some activities, such as socializing, may be “high-energy” but enjoyable. To identify these activities, create a list of activities from your diary, looking at what you “must do,” what you “like to do,” and what can be dropped.
Which of te things that “must be done” can be delegated to others? A supportive partner, friend or counsellor may be able to help you. By paring down the “must do” activities, you will make more time to rest and do the things that you enjoy.
Exercise
Most healthy people are re-energized after moderate exercise. People with CFS/ME are exhausted after doing too much exercise, either immediately following the activity or the next day. Even a short period of moderate exercise, like a walk around the block, can be exhausting.
Don’t Push Yourself
The goal is to try to exercise regularly without “pushing yourself” and causing fatigue the next day. This may mean that you have to reduce the amount of physical activity you do, monitor your symptoms, and increase your activity level slowly as your energy increases. For example, if you are walking quickly for 15 minutes daily and find that you wake up tired and achy every day, try walking a little more slowly or for a shorter amount of time. Or you can break your walk into three five-minute walks. Use your activity log to monitor these changes and note how they affect your symptoms.
A physical activity program should involve aerobic exercise, strengthening exercises and stretching, though this may vary depending on your level of energy.
Aerobic Exercise
Walking, swimming (or aquatherapy) and bicycling are all low-impact activities that are gentle on your joints.
Start slowly. If you are bedridden, try exercising in bed with range of motion exercises or walking around your home a bit before you get back into bed. If you are house-bound, try walking for as little as five or 10 minutes each day, walking in and out of the rooms of your house making a circuit. As your energy level improves, try increasing your activity level by 10 percent. For example, if you are walking for 10 minutes each day comfortably, try walking for 11 minutes the next week.
Strengthening Exercises
Strengthening exercises can help build up your muscles and prevent osteoporosis. A physiotherapist or knowledgeable fitness instructor can show you some exercises. If you are bed-ridden, find one that is able to visit you at home. To avoid over-stressing your muscles, do only a few repetitions (three) at a time, using no weights but using your body weight as resistance.
Stretching
Stretching helps maintain your flexibility. Start with gentle stretching exercises when your muscles are warm, for example, in the morning before getting out of bed, after a shower or after your muscles are warmed up from exercise. Do not stretch cold muscles. Even if you are bedridden or confined to sitting, you can stretch your muscles. Stretching should be gentle and not cause you any pain.
An Exercise Program that’s Right for You
A physiotherapist can help design an exercise program that is appropriate for you, given your energy level. Exercise DVDs are also available. Before starting any exercise program, consult your doctor.
In addition to medications and physical therapies, regular relaxation and limiting your stress can help to manage your pain as our minds and bodies are intricately connected.
You may want to try different relaxation techniques: deep breathing exercises, meditation, visualization techniques, progressive relaxation and biofeedback. As little as 20 minutes of relaxation a day can have health benefits, including reduced anxiety and an increased sense of well-being. Relaxation is particularly important after a period of activity (physical or mental), when you are feeling stressed, and before bedtime to prepare for a good night’s sleep.
Choose a place in your home that will be your “relaxation space,” preferably a private place where you can be alone, uninterrupted, for at least 10 minutes at a time. You may need to let your family know that this is a time when you are to be left alone.
Lie down on your bed or a comfortable couch and close your eyes. Take a few slow, deep breaths to start. Tell yourself that this is your time. When you feel settled, as you breathe in through your nose, say “re” silently to yourself and then say “lax” as you exhale through your mouth.
An option is to count to four as you inhale through your nose, pause, and then breathe out for a count of four through your mouth. The number you count to doesn’t matter, as long as you don’t force your breath. Do this for 10 minutes (or longer), twice a day.
This breathing exercise can also be done at any time of day, for a few minutes, when you start to feel stressed. For example, if you are working and start to feel anxious, feel a headache coming on or a stiff neck, take a couple of minutes to do this relaxation exercise before you continue with your work. Do this as soon as you recognize your particular symptoms of stress. The earlier that you can break the stress-fatigue cycle with a relaxation technique, the better.
You can also do this simple exercise after you get into bed if you have trouble sleeping. It will help reduce worries that are interfering with your sleep. If you wake during the night with your mind racing, this exercise is also useful. As soon as you notice your thoughts returning to the “problem,” go back to your “re-lax” phrase and try to simply focus on your breath and the present moment, to still your mind and feel calmer.
If you are living with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), your doctor should order a sleep study, to identify any sleep disorders you may have.
A sleep study requires that you sleep in a special lab for one night, with electrodes attached to your face and head, your chest, abdomen and legs. These electrodes allow a technician to examine your sleep patterns.
If you are suffering from CFS/ME, getting enough sleep is crucial. Better sleep leads to improved physical and mental energy.
Here are some useful tips:
- Pace your daytime activities to conserve your energy throughout the day and prevent “crashes.”
- Do not wait until you are exhausted before going to bed or you will go to bed wired and tired.
- Go to bed at the same time every night and plan for at least eight to 10 hours of sleep each night.
- Avoid being very hungry or very full at bedtime.
- Avoid caffeine, alcohol and nicotine, as they can impair sleep.
- Do “quiet” or relaxing activities for one hour before bedtime, such as taking a warm bath with ½ cup of Epsom salts or ½ cup baking soda.
- Make the bedroom a “worry-free zone.” Use your bed for sleeping and sex only, not eating or watching TV.
- Warm your bed with a hot water bottle before getting in. Keep the room dark and quiet while sleeping – use earplugs and an eye mask if necessary.
- Protect your neck while you’re sleeping by using a cervical pillow or by repositioning a regular pillow to maintain a space between your shoulder and neck.
- If you suffer from sleep apnea, use your CPAP machine.
Sleep Medications
If you find that these strategies are not working for you, medications to induce sleep might help. Discuss this option with your physician.
Some non-prescription medications, such as Gravol and certain kinds of anti-histamine, cause drowsiness as a side effect and can be used by adults who are having trouble sleeping. Discuss with your doctor any over-the-counter or natural remedies that you are considering before trying them to be sure that all of your medications are compatible.
Some people need prescription medications to help them sleep. There is no one particular medication that helps everyone.
Examples of prescription medications commonly used to help induce sleep include zopiclone (Imovane), tryptophan (Tryptan), clonazepam (Rivotril), and low doses of tricyclic anti-depressants, such as amitriptyline (Elavil) and doxepin (Sinequan). None of the medications help a person achieve a deep, restorative sleep.
Be aware that sleep medications can cause side effects, such as dizziness, headache, nausea, prolonged drowsiness, allergic reactions, impaired coordination and sleepwalking, among others. Sleeping pills can also be habit-forming and cause withdrawal symptoms when stopped. If you do decide to take sleeping pills, never mix them with alcohol, as together they can have an additive effect and you may accidentally overdose. If you decide to stop taking the sleep medication, talk to your doctor first.
Sleep Disorders
Restless Leg Syndrome
Some patients with CFS/ME experience restless leg syndrome, which involves numbness and tingling in the lower limbs and restless, twitching legs. The condition makes it difficult to get enough sleep. Restless leg syndrome is exacerbated by long periods of inactivity and relieved by walking or stretching. If your sleep is disrupted by this condition, ask your doctor about medications and magnesium glycinate/citrate that may help.
Sleep Apnea
Some patients with CFS/ME have obstructive sleep apnea. Symptoms include loud snoring and periodic pauses in breathing, for at least 10 seconds, after which breathing is resumed with a snort. If you suspect that you have sleep apnea, make an appointment at a local sleep clinic. Sleep apnea can be treated with continuous positive airway pressure (CPAP) therapy, which uses a machine to keep the airway open and allow for continuous breathing through the nose. If you are overweight, then losing weight may also be helpful as obesity can contribute to sleep apnea. Unfortunately, correcting the sleep apnea does not eliminate the fatigue from CFS/ME.
A healthy diet helps encourage the healing process. Here are some guidelines:
- Avoid caffeine and alcohol.
- Make foods that can be easily prepared and frozen in individual servings.
- Eat smaller meals, at regular times, ideally every three to four hours.
- Each meal should contain at least three out of the four food groups from Canada’s Food Guide: meats and other protein-containing foods, fruits and vegetables, whole grain products (starches) and milk and milk products.
- Add essential fatty acids to your diet. These are important for the omega-3 fatty acids that help reduce inflammation and pain in the body, and in high doses help control mood, in particular, depression. Foods rich in these nutrients include fish like salmon, mackerel, herring, sardines and halibut; flaxseeds and pumpkin seeds; and canola oil.
- Eat at least five to 10 servings of fruit and vegetables daily. These servings can be in the form of soup or juice, but whole foods are preferred. Frozen vegetables are great because they are pre-washed and pre-cut.
- Fish eaten must contain low levels of mercury.
- If possible, eat organic foods to minimize your exposure to pesticides.
- Drink six to eight glasses of filtered or spring water daily.
- Take a multivitamin and mineral supplement daily (with low or no iron if you are post-menopausal). You may need a calcium supplement to prevent osteoporosis and additional vitamin D if your illness is limiting your sun exposure.
- If you have allergies, intolerances or sensitivities to foods, ask your physician to refer you to an allergist that can help you plan a healthy diet.
Relaxation exercises and gentle stretching can help to reduce pain. Some people find that massage therapy, physiotherapy, osteopathy, taking a bath with Epsom salts, acupuncture, acupressure, Botox injections and Lidocaine injections are also helpful. A relatively new therapy, called Synaptic Electronic Activation Technology (SEA Tech.), used by physiotherapists, shows promise for long-term pain relief (however, you should not use it if you are pregnant or have a pacemaker).
If relaxation, stretching and other physical therapies do not reduce your pain, your doctor may suggest pain or other prescription medication. Discuss the benefits and potential side effects of any medication with your doctor, including over-the-counter medications, as any medication can have side effects.
When it comes to pain relief, there is no “one size fits all” solution. Pain relief is a process of trial and error that you must enter into with your doctor, to help improve your pain and the quality of your life. It is most helpful if you bring in your activity log to all your regular appointments with your doctor. On your activity log, record the pain level by assigning a number from zero to 10 (10 is the worst pain), the time and amount of medication you are taking, and any side effects that result from the medication.
The purpose of taking the medication is to improve your quality of life. You will not be able to get rid of all of your pain. The medication will help to reduce your pain so that you will be able to do more as your health improves. As you become more mobile, you may be able to reduce the amount of pain medication you are taking by doing relaxation and meditation exercises to help control your pain.
Medications that may help include:
- acetaminophen (Tylenol), every four hours; with added codeine, as needed (no more than eight tablets per day)
- tricyclic antidepressants, such as Amitriptyline or Nortriptylline
- SSRI antidepressants, such as Paxil, Zoloft and Effexor
- top-grade omega 3 fish oil and omega 6 oil, which can help reduce inflammation
- NSAIDs (non-steroidal anti-inflammatory drugs), such as Advil, Ibuprofen and COX-2 inhibitors like Celebrex
- magnesium glycinate/citrate, which can help reduce pain and muscle spasms
- muscle relaxants, such as Cyclobenzaprine (Flexeril), which can help to relax spastic muscles
- antinauseants, such as Gravol, and cannabinoids like Cesamet
Patients with severe pain may need stronger pain relieving medications, including narcotic medication. Your doctor will carefully monitor this kind of treatment and may refer you to a pain clinic.
People living with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) sometimes have environmental sensitivities or intolerances, whereby they experience symptoms when they are exposed to low levels of everyday substances in the environment. If you have environmental sensitivities, the most important thing to do is avoid the substances that trigger these symptoms.
Here are some tips for making your home more environmentally safe. You will likely need help to make these changes. Or try breaking each task into 15-minute intervals.
- Decrease the number of “dust collectors” in your home by removing knick-knacks, decorative pillows and stuffed animals.
- Reduce clutter, particularly paper and books, which collects dust. Keep papers in a desk and books in a glass-covered case.
- Make your own cleaning products using baking soda, vinegar and pure soap or buy cleaning products labelled “non-toxic,” “eco” or “safe.”
- Use unscented personal care products, such as deodorants, lotions and shampoos. Avoid perfume and cologne.
- Reduce the humidity in your house to 30 to 50 percent, to prevent mould growth.
- Get rid of any mouldy items, such as indoor plants.
- Do not store items in cardboard boxes – use moisture-proof storage containers.
- Avoid pesticides and herbicides, both indoors and outdoors.
- If you have an option, choose hardwood or ceramic flooring instead of carpets. If you have carpets, use a central vacuum or a vacuum with a HEPA filter.
For more information, see the sections on Indoor Air Quality at Home and Environmental Sensitivities.
Coping strategies are critical for people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), as they usually feel as if their lives have been turned upside down. If you have CFS/ME, you may have lost your ability to work, participate in physical activities and socialize, as you did in the past. You may encounter disbelief from health professionals, and possibly family and friends, who suggest that you are not really sick because you “look fine.” Some people with CFS/ME start to believe this and berate themselves for “not doing enough,” which can lead to over-activity and “crashing.” Developing coping skills and getting emotional support are, therefore, a crucial part of healing.
A survey of people with CFS/ME in the US found that the most helpful skill for coping with the illness was “attitudinal adjustment.” The study participants also noted the importance of rest, pacing themselves, limiting their activities, minimizing their stress, reprioritizing their goals, educating themselves, and improving their diet and nutrition.
“Attitudinal adjustment” boils down to accepting the illness and taking care of yourself. Study participants made the following comments:
I stopped comparing myself to others.
I don’t waste time thinking about what life was like before I was sick.
I remind myself to be in the moment – that’s all there is.
I look back and compare myself to what I was like when I was first sick and appreciate the progress I have made so far.
A long-time survivor of CFS/ME and advocate said: ”The most important point that I want to make is that you are not your illness. You are still that funny, creative individual who just happens to have a chronic illness.”
Emotional and Spiritual Support
Anyone experiencing a chronic illness needs time to grieve the loss of their former life. Some people find that engaging in activities that cultivate their spiritual growth, such as prayer, yoga, religious services or meditation, is helpful.
Social Support
Isolation can be one of the most difficult aspects of having CFS/ME. Family and friends may not understand your lack of energy and what you are going through. This may be compounded by physicians and other health-care workers who refuse to see your illness as “real.”
The first step in helping others to understand your condition is to educate yourself, and then others. It can be helpful to connect with others who have the illness, for example, through a support group. Belonging to a group or community of people who understand and care can provide you with emotional support and useful information. Network with others who can support you, through brief telephone calls or emails.
Depression and Anxiety
Some people with CFS/ME feel depressed as a result of their illness, the many lifestyle changes and restrictions that they have had to cope with, such as being unable to participate in the activities they once enjoyed, as well as possible job, financial and relationship problems. If you have CFS/ME and think that you may be depressed, discuss this with your doctor. He or she may be able to refer you to a counsellor or support group.
Many people with CFS/ME experience anxiety. Relaxation techniques, pacing yourself and developing an attitude that can accommodate your situation will help. However, some individuals require medication to alleviate their anxiety or panic attacks.
Stress management tools may also help you deal with the depression and anxiety that can accompany chronic illness.