Living with chronic fatigue syndrome can feel like an endless guessing game. You don’t know what caused it. There’s no decisive test to diagnose it. And there aren’t any known medications to help with the fatigue. Dealing with the pain, fatigue and uncertainty can leave you feeling frustrated and helpless.
But there’s one thing you can control: proactively looking for ways to manage your symptoms. Barbara Bruce, Ph.D., L.P., a Mayo Clinic psychologist, recommends that you “work towards a structured approach to managing your fatigue and other symptoms.”
You’re probably thinking, “easier said than done.” But we’re here to help. In this article, we’ll discuss ideas you can use to manage your symptoms and improve your quality of life.
What is chronic fatigue syndrome?
The first step in taking charge of your chronic fatigue symptoms is learning about the condition.
Chronic fatigue syndrome — also called myalgic encephalomyelitis — is diagnosed after six months of extreme fatigue that doesn’t go away with rest. Around 1 million people in the U.S. have chronic fatigue syndrome.
Nobody knows what causes chronic fatigue, but some experts hypothesize that it might start after you get the flu, a cold or the Epstein-Barr virus (which causes mononucleosis), triggering changes in your central nervous system. Even the COVID-19 infection may trigger chronic fatigue in some patients.
Another possibility is that it happens after a period of heavy stress. Currently, there’s no medication specifically designed to treat chronic fatigue syndrome, but researchers are actively working on it.
Chronic fatigue syndrome symptoms
Each person with chronic fatigue syndrome has a unique combination of symptoms that vary in severity and frequency. And symptoms can be different from day to day. These constant fluctuations can make it hard for friends, family and co-workers to understand the condition.
Common symptoms of chronic fatigue syndrome include:
- Extreme, long periods of exhaustion, especially after physical or mental exercise.
- Problems with memory or thinking skills.
- Dizziness that worsens with moving from lying down or sitting to standing.
- Muscle or joint pain.
- Unrefreshing sleep or trouble sleeping.
- Frequent sore throat or flu-like symptoms.
- New types of headaches that you haven’t had before.
- Tenderness in the lymph nodes under your arms or on your neck.
Why do women get chronic fatigue syndrome more often than men?
According to the U.S. Department of Health & Human Services, women are up to four times more likely to have chronic fatigue than men.
“The vast majority of patients I see with chronic fatigue syndrome are women,” says Dr. Bruce.
However, we don’t know the reasons why women are affected more often.
“A number of theories have been posited to explain the sex differences. One theory is that women tend to seek medical attention at higher rates than men and are then able to get a diagnosis of chronic fatigue or fibromyalgia,” says Dr. Bruce. “Another theory suggests that, perhaps, women are more stressed than men, which may set them up for a diagnosis of chronic fatigue or fibromyalgia.”
Chronic fatigue syndrome vs. fibromyalgia
Many people with chronic fatigue syndrome also have fibromyalgia. Like chronic fatigue, fibromyalgia is a medically unexplained condition with no cure. In both cases, symptoms include exhaustion, sleep disruption and pain. And both conditions are more common in women.
10 tips for living with chronic fatigue syndrome
There are many things you can try to do to alleviate your chronic fatigue syndrome symptoms. For example, Dr. Bruce says, “managing stress, sleep, relaxation skills, support and exercise are important components that need to be addressed.”
Here are some tips you can try. Reach out to your health care team or a therapist if you need help implementing some of these ideas.
1. Form a chronic fatigue health care super squad
Start by finding a primary care physician that makes you feel comfortable and understood. Ensure that your doctor knows all of your health history and symptoms.
After that, Dr. Bruce recommends, “Work with a physical therapist, counselor or life coach in conjunction with your primary care physician to address these areas of impact.” Together, you and your squad can create a plan to manage your symptoms. [2]
2. Keep up with friends and family
When you have chronic fatigue syndrome, you might not be up to going to every activity with your friends. But be sure to keep in touch with the people you care about. That could include regular texts, emails or phone calls if in-person gatherings seem too exhausting at times.
“In my experience, women suffer more from the social isolation that results from their chronic symptoms,” says Dr. Bruce. “Find ways to connect with others in support groups or volunteer activities. Social support is crucial to successfully managing chronic symptoms.”
3. Prioritize what’s important
Your goals and responsibilities don’t go away just because you have chronic fatigue. Create an online calendar or a daily to-do list to help you focus on the things that are most important to you. Delegating tasks to others and learning to say “no” to low-priority commitments can help, too.
4. Stay on schedule
With chronic fatigue syndrome, there are often good days and bad days. On a good day, it’s tempting to go all out — doing everything you want to do. However, if you overdo it, your symptoms might return with a vengeance. To keep your symptoms at bay, stick to a regular daily schedule that your body can handle.
5. Get some exercise
If you’re feeling exhausted, exercising might feel counterintuitive. However, regular exercise is one of the best ways to reduce fatigue and pain. Start small and increase the amount of activity over time. It will help relieve your symptoms and put you in a better mood.
6. Reduce your stress
Having chronic fatigue is stressful enough. So, try to reduce stress in other areas of your life. Identify what makes you stressed out and try to limit its role in your life. Learn relaxation techniques, such as breathing exercises, yoga, tai chi or meditation.
7. Sleep well
Sleep is key to helping your body work properly — especially if you have chronic fatigue symptoms. Get to sleep easier by setting a regular sleep schedule, eliminating daytime naps and avoiding caffeine, nicotine or alcohol before bedtime. If you’re still having trouble, ask your doctor if any of your medications interfere with sleep.
8. Eat healthy
There aren’t any “magic foods” that help improve chronic fatigue symptoms. But eating healthy foods and drinking lots of water can make a difference in how you feel each day.
9. Grieve for your losses — constructively
Let’s face it: When you have chronic fatigue syndrome, you miss out on things you took for granted before — such as feeling energetic, enjoying a hobby or going a day without pain. So, it’s OK to grieve and be angry sometimes. But if you start dwelling on what you can’t do, consider talking to a mental health expert.
10. Focus on what you can do
Sure, you have some limitations with chronic fatigue, but there’s still lots to look forward to. Studies show that a positive attitude lessens pain and helps you cope with other symptoms. Accomplishing your goals might take a bit longer or require extra planning, but chances are, you can still achieve them.
Relevant reading
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