Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) will change your life in many ways. It is a condition that can be hard to cope with. But you can adopt some strategies to make it easier.
You may go through bad phases, or relapses, followed by better ones (remission). Knowing to expect this pattern will help you understand how to manage your energy.
When you’re in a relapse, it might be hard to get through even simple morning routines, like a shower. Plan to allow extra time for tasks that are hard for you.
When you feel well again, you may want to try to do as much as you can while you’ve got the energy. Don’t try it. If you push yourself too hard, you may crash later. Repeating this cycle can drive you right back into a relapse.
You’ll need to learn to balance daily activities with rest, even when you’re in remission.
While staying fit is an important part of your overall health, exercise can be a tricky issue for those with ME/CFS.
Individualized programs are needed because any exercise can and does lead to exhaustion. Work with your doctor or a physical therapist to establish your personal limits for physical and mental activity and then you can learn to pace yourself and balance your rest with your activity. Staying within this “energy envelope” can help you avoid post-exertional malaise (or PEM).
A physical therapist can modify your exercise plan. Do not overdo it. Pacing is important.
Watching what you eat can help you manage your symptoms. Avoid any foods or chemicals you are sensitive to.
A diet rich in polyunsaturated and monounsaturated fats, avoiding saturated fats and refined carbohydrates—like the Mediterranean Diet—is reported by many people with ME/CFS to be helpful. Eat several small meals throughout the day. For example, three meals and three snacks might help keep energy levels up.
Smaller meals might also help control nausea, which sometimes happens with chronic fatigue syndrome. To help control energy levels, it may also be a good idea to avoid these things:
Help Your Memory
Some people with ME/CFS have memory loss. Use a day-planner (a paper one or a smart phone app) to keep up with your schedule and remember the things you need to do.
Set reminders on your smartphone when it’s time to go somewhere or do something. Keep lists. Use “sticky notes.”
Puzzles, word games, and card games – also available on your smartphone – can keep your mind active and might help your memory improve.
About half of those with ME/CFS work. If you have problems, you might qualify for coverage under the Americans with Disabilities Act (ADA). This law requires some employers to provide “reasonable accommodations” to help people with disabilities do their jobs.
You might need a flexible schedule, a place to rest at work, and written job instructions for people with memory problems. The accommodations depend on your job, your symptoms, and how they affect your ability to do your job.
If you can’t work because of your condition, you might qualify for disability benefits from either a private insurance policy or from Social Security.
It can be hard for co-workers, friends, family, and loved ones to understand ME/CFS. They might not realize how much it affects your daily life. Or they might not believe that it’s real. Friends and co-workers of people with ME/CFS need to get educated about the condition.
Chronic fatigue can take a toll on your personal relationships, too. Loss of energy, pain, and potential side effects of medications can keep you from enjoying an active social life, playing with your kids, or having a healthy sex life.
You may find you feel better when you talk to other people with your condition. Your doctor can give you information about support groups in your area.
About half of those with ME/CFS develop depression at some point. Some symptoms of depression are similar to your condition, so it can be hard to tell the difference. “Red flags” for depression could include feelings of hopelessness, sadness, guilt or worthlessness, or thoughts of suicide and death.
If you think you are depressed, tell your doctor. Medications and talk therapy for depression can help with physical and emotional symptoms. If you have thoughts of suicide, call the Suicide & Crisis Lifeline at 988 or go to the emergency room.