Chronic Fatigue Syndrome Awareness Day—May 12
May 12 is Chronic Fatigue Syndrome (CFS) Awareness Day. This date was chosen to honor the birthday of Florence Nightingale, who was a social reformer, statistician, and founder of modern nursing. Nightingale was virtually bedridden with a painful and fatiguing illness resembling CFS or fibromyalgia, yet went on to inspiring accomplishments, including establishing the Nightingale Training School.
CFS is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Symptoms affect several body systems and may include muscle or joint pain, impaired memory or mental concentration, and insomnia, which can result in reduced participation in daily activities. In some cases, CFS can persist for years.
The cause of CFS has not yet been identified, and no tests can diagnose CFS. There is no cure, and no prescription drugs have been developed specifically for CFS. Because many illnesses have fatigue as a symptom, doctors need to take care to rule out other conditions, which may be treatable.
Living with CFS
If you are living with CFS, you know how hard it can be. People with CFS often can no longer carry out every day activities. And for some people with CFS, fatigue may not be the symptom that bothers them the most. Because CFS symptoms vary over time, managing this illness can be frustrating.
If you are living with CFS, closely monitor your health and let your doctor know of any changes. Your doctor will regularly monitor your condition and change your treatment as needed.
A team approach that involves doctors and patients is one key to managing CFS. Work with a team of doctors and other healthcare professionals who might include rehabilitation specialists, mental health professionals, and physical or exercise therapists. Together, your team can create a treatment program that best meets your needs. This program should be based on a combination of therapies that addresses your symptoms, coping techniques, and managing your normal daily activities.
If you have CFS, you may be dealing with
- Worries about your health
- Changing and unpredictable symptoms that may interfere with activities of daily living
- Memory and concentration problems that seriously affect work or school performance
- Loss of independence, livelihood, and financial security
- Changes in relationships with family and friends
It is normal if you feel overwhelmed at times. Adjusting and coping with the realities of CFS helps you manage your illness better.
- Get support! Support is very important when dealing with any long-term illness. Adjusting to a long-term illness can sometimes lead to symptoms of depression, anxiety, anger, and guilt. Support can come from a counselor or a CFS support group.
- Find a job and lifestyle that works for you. If you have enough energy to work, find a job that allows you to live as independently as you can.
- If you are unable to work, you may find it hard to accept and cope with the fact that you have to use disability benefits. If you decide to apply for disability benefits, your doctor can help you by keeping good notes and using a simple assessment tool to track your health status. You will also have to contact the Social Security Administration to apply for disability benefits.
- Educate your family and friends. Chronic illnesses like CFS affect your friends and family. It may be helpful in talking about how living with CFS may affect your relationships.
- Use the following tips to help with cognitive problems.
- When information is conveyed too quickly, ask the person to slow down rather than trying to catch up; then you can summarize and repeat.
- When cooking, assemble all ingredients before starting instead of searching for ingredients as you follow the recipe.
- Make a weekly schedule of activities using different colors to signify activities as urgent, moderately urgent, and not urgent.
- Learn to say no – or suggest a different time or place for a discussion or activity.
- Be proactive in organizing your life given the resources available to you now, not before you got sick
Recognize that carrying out activities of daily living is physical exercise that may be challenging for you. Avoid overdoing activities that may make your CFS symptoms worse. Talk to your doctor before starting any new type of activity program. Vigorous or intense exercise is not recommended for patients with CFS. Start exercise or activities at a very low, basic level and gradually increase while monitoring how you feel the next day. Some people with CFS find graded exercise or activities helpful.
If you try adding activities or exercise, remember the following:
- Spread activities evenly throughout the day. Break activities like laundry or shopping into small manageable tasks with rest breaks in between.
- Avoid the "push-crash" cycle. If activities or exercises are not spread out, a "push-crash" cycle may occur. "Push-crash" cycle is when a person does too much all at once, crashes, rests, starts to feel better and does too much once again.
You may have problems with sleep. To help get the most out of sleep, try the following:
- Go to bed at the same time each night and wake up at the same time each morning.
- Make sure your bedroom is quiet, dark, and relaxing and that it isn't too hot or too cold.
- Keep a regular bedtime routine. For example, take a warm bath each night before going to bed.
- Avoid long naps during the day.
- Give yourself plenty of time to wind down before going to bed.
- Avoid watching TV, reading, or working on a computer in bed.
- Avoid large meals before bedtime.
- Avoid caffeine within 6 hours of bedtime and alcohol and tobacco within 2 hours of bedtime.
- Try light exercise and stretching earlier in the day, at least 4 hours before bedtime.
Living with CFS is difficult and unpredictable. You may deal with debilitating symptoms and other problems such as depression or frustration, but remember you are not alone. Your doctor and other healthcare professionals can offer help and support. And don't be afraid to ask your family and friends for help. Together, you can find ways to manage your illness.