Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex multisystem disorder. It is characterized by extreme fatigue that lasts for weeks and cannot be explained by other underlying medical conditions. It is a debilitating illness that is difficult to diagnose and commonly misunderstood. Usually, symptoms worsen with mental and physical activity and do not improve with rest. Living with ME/CFS is extremely difficult as there is no cure, and it can change your life in many ways. That being said, some strategies make coping with this condition easier.
What is CFS
ME/CFS is an often misunderstood condition, and the cause is still unknown. The symptoms can resemble those of more known conditions. There is no single test to confirm a diagnosis of chronic fatigue syndrome. You may need various medical tests to rule out other health problems with similar symptoms. Symptoms can also vary from person to person and fluctuate daily/hour to hour.
Common symptoms are:
Fatigue: feeling extremely tired all the time, making it hard to do daily activities
Problems with memory or concentration: Has trouble remembering things or thinking clearly
Unrefreshing sleep: still feeling tired after resting or sleeping or having problems sleeping, such as waking up often during the night
Extreme exhaustion after exercise: Taking a long time to recover after physical or mental activity
Some other symptoms include:
Enlarged lymph nodes in the neck or armpit
Unexplained muscle or joint pain
Dizziness or nausea
Fast or irregular heartbeats
Managing CFS Symptoms
There is no cure for ME/CFS, and treatment focuses on improving and managing symptoms. Each individual with ME/CFS can have different symptoms and responses to symptom management techniques. It is important to work you your doctor to find strategies that work for you.
Post-Exertional Malaise (PEM)
PEM is the worsening of symptoms after even minor physical, mental, and emotional exertion. The type and level of exertion that sets off PEM varies from person to person. Sensory overload (too much light and/or sound) can also induce PEM. Symptoms may not worsen until 12 to 48 hours after activity but can last days or weeks.
Managing PEM symptoms involve activity management and pacing. Pacing means learning how to balance rest and activity to avoid flare-ups. It is essential to find your limits as not everyone can tolerate the same physical and mental activity level. It may be helpful to keep a diary or journal to track activity and symptoms to find your personal limits.
It may also be helpful to plan activities with rest included. Even everyday activities may cause exertion, and avoiding these situations altogether may not be possible. Therefore, giving yourself the time and space to rest so as not to push your activity limits will help manage flare-ups.
It is important also to not push these limits even on a good day. Even if you feel like you should make up for lost time, over-exertion can lead to crashes or worsen your symptoms, which can cause the cycle to repeat itself. Try taking frequent breaks, sitting down when you can, and dividing larger tasks into smaller tasks to lessen the exertions.
Having trouble with sleep and rest is a common symptom of ME/CFS. Common sleep complaints include difficulty falling or staying asleep, extreme sleepiness, intense and vivid dreaming, restlessness, legs, and nighttime muscle spasms. Some basic sleeping tips are helpful for everyone to set up good sleeping habits:
· Going to bed at the same time every night
· Making sure the bedroom is dark, quiet, and comfortable
· Removing electronics from the bedroom
· Avoiding large meals, caffeine, and alcohol before bed
These tips may or may not be helpful for people with ME/CFS. If they aren't and you are thinking about using sleeping pills, try over-the-counter products first. If those don't either, talk to your doctor about using prescription sleep medication. If this still doesn't work for you, you may want to consider seeing a sleep specialist; there may be more specific sleep treatments or therapies that can help you get a better night’s sleep.
ME/CFS can cause deep pain in the muscles as well as headaches and soreness. Always talk to your healthcare provider before trying medication. Over-the-counter medications like acetaminophen, aspirin, and ibuprofen can work well on muscle pain and headaches. If they do not provide enough pain relief, however, there are pain specialists that may have better ways of tackling your pain. Counselling can offer new ways of dealing with pain; this is especially helpful for those with chronic pain. Other pain management methods include stretching and movement therapies, gentle massage, heat, toning exercises, and water therapy for healing.
Adjusting to debilitating illnesses like ME/CFS can too often lead to other problems like depression, stress, and anxiety. Therapy and medication, like antidepressants and anti-anxiety medications, can effectively combat these mental issues. However, for some ME/CFS patients, these drugs can worsen symptoms and cause unwanted side effects. Talk to your health care provider to see which options are best for you.
In addition, deep breathing, muscle relaxation, massage, and movement therapies have been shown to significantly reduced stress and anxiety while promoting a sense of well-being.
Living With ME/CFS
ME/CFS can make everyday activities extremely difficult and may require you to make some significant lifestyle changes. This condition can affect not only your physical health but also your mental and emotional well-being. Having a support system in place is essential. Supports could be your friends and family or talking to others with ME/CFS. It might be helpful to look for support groups in your area.
While doing daily activities, getting through even a simple morning routine may seem impossible, especially on bad (or relapse) days. Try giving yourself extra time for tasks, and remember not to push yourself too hard to avoid crashing.
Exercise is an integral part of your overall health. Still, how you exercise with ME/CFS is different and can be tricky. Work with your doctor or physical therapist to establish your baseline and limit to find an exercise routine that works for you. It is important to note that pacing is crucial for ME/CFS patients.
Controlling nutrition and diet may help manage symptoms. Some ME/CFS patients are sensitive to certain foods and chemicals. Many people with ME/CFS have reported that diets like the Mediterranean diet can be helpful. The Mediterranean diet is rich in polyunsaturated and monounsaturated fats while avoiding saturated fats and refined carbohydrates. You may also want to eat several small meals daily rather than three big ones. This may help keep your energy up while also helping control nausea if that is one of your symptoms. Doctors also recommend avoiding sugar, sweeteners, alcohol, and caffeine.
Trouble with memory is another symptom that may get in the way of daily life. Try using a planner or calendar to keep up with your schedule. You can also set reminders on your phone and keep lists on sticky notes to help you remember important things. Puzzles, word games, and card games can keep your mind active and have been shown to help improve memory. Some doctors may also prescribe stimulant medications like the ones used to treat ADHD. These medications can improve concertation but can also lead to the push-crash cycle and worsen symptoms.
Work is another facet of life that ME/CFS significantly alters. Only about half of people with ME/CFS work. Working with ME/CFS requires a level of accommodation afforded by your workplace. You might need a flexible schedule, a place to rest at work, and written job instructions for people with memory problems. The specific accommodation level depends on your job, your symptoms, and how they affect your ability to do your job.
Lastly, relationships with co-workers, friends, family, and loved ones can be harder to maintain with ME/CFS. The significant people in your life must know and understand your condition. This is often easier said than done because of the stigma and confusion about this condition. They may not realize how much ME/CFS affects your ability and daily life.
Living with chronic fatigue syndrome can be difficult. You may need to try a few different things before you find what works for you. Many treatment options are also available, so don't hesitate to seek help if you're struggling. At Nomina Integrated Health, we specialize in helping people with chronic fatigue syndrome. We understand how challenging it can be and are here to support you every step of the way. If you have any questions or want more information, please don't hesitate to call us. We would be happy to chat with you and answer any questions you may have.