Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Care Instructions

Overview

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disease that causes you to feel so ill that you can't do your normal daily activities. Sleeping problems occur along with extreme fatigue that doesn't get better with rest. Any kind of activity often makes your symptoms worse. This is called post-exertional malaise. You may have other symptoms like problems with thinking.

How severe ME/CFS is varies from person to person.

Your doctor can prescribe medicines that can help ease your symptoms. Your doctor can also help you learn to manage your energy. This can help you be as active as possible without overdoing it and causing your symptoms to get worse.

Another name for this condition is systemic exertion intolerance disease (SEID).

How can you care for yourself at home?

Here are some steps you can take to control and sometimes relieve your ME/CFS symptoms.

• Manage your activity so that you can be as active as possible without causing your symptoms to get worse.
  • Stay within your energy envelope. This is the amount of energy you have to spend in a day. For each activity you want to do, think about how much energy it will take. This can help you manage your day so that you don't spend too much or too little energy.
  • Pace yourself. Have a plan for how long you will do an activity before you take a break. Don't push yourself to get more done on days you feel well. During and between activities, take rest breaks often. This takes practice. You may find that keeping a diary or using a fitness tracker to track your activities helps.
• If you have problems sleeping, try to improve your sleep habits.
  • Avoid drinking or eating anything with caffeine after 3 p.m. This includes coffee, tea, cola drinks, and chocolate.
  • Make sure your bedroom is not too hot or too cold, and keep it quiet and dark.
  • Avoid watching TV or using your cell phone, tablet, or computer before bed.
  • Make sure your mattress provides good support.
  • Take naps if you need to. Keep them short, no more than 1 hour, and try not to take them late in the afternoon.
• If you have problems with your ability to think, remember, or concentrate, you may try finding ways to simplify your daily tasks. For example, have one spot you always put your keys and write down things you need to remember. Also make sure to pace any mental activities like phone calls or reading and writing emails.
• If you are sensitive to certain foods or chemicals, sound, or light, you may try to avoid those things. Some people may find it helpful to modify their diet and to use eye masks, sunglasses, or earplugs.
• Consider joining a support group with other people who have ME/CFS. These groups can be a good source of information and tips for what to do to feel better. Your doctor can tell you how to contact a support group.
• Consider going to counseling. It can help you learn to cope with ME/CFS. It may also help to work with a professional counselor who understands ME/CFS.