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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Care Instructions

Your Care Instructions

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can cause you to be so tired and weak that you can't do your normal activities. Even after you rest, you still may not have your same old energy. Why ME/CFS makes you feel so tired is not well understood. Another names for this condition is systemic exertion intolerance disease.

Your doctor can prescribe medicines that can help ease your symptoms. There are things you can do for yourself, such as making your schedule more flexible, that should help.

Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse call line if you are having problems. It's also a good idea to know your test results and keep a list of the medicines you take.

How can you care for yourself at home?

  • Keep a diary for a week with notes on the times of day when you have energy and when you are tired. See if there is a pattern to how your energy levels change during the day. Try to plan your work, school, and activities around that pattern.
  • Resist the desire to do too much when you have energy. If you overdo it, you may get too tired. Then you may be even more tired the next day.
  • If you have problems sleeping, try to improve your sleep habits.
    • Go to bed only when you are sleepy, and get up at the same time every day, even if you do not feel rested. This might help you sleep well the next night and after.
    • If you lie awake for longer than 15 minutes, get up, leave the bedroom, and do something quiet, such as read, until you feel sleepy again.
    • 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.
    • 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.
  • Eat a healthy diet. You may feel better if you avoid heavy meals and eat more fruits and vegetables.
  • Take an over-the-counter pain medicine, such as acetaminophen (Tylenol), ibuprofen (Advil, Motrin), or naproxen (Aleve) to reduce pain and aches. Be safe with medicines. Read and follow all instructions on the label.
  • 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 counselling. It can help you learn to cope with ME/CFS. It may also help to work with a professional counsellor who understands ME/CFS.

When should you call for help?

Watch closely for changes in your health, and be sure to contact your doctor or nurse call line if:

  • Your fatigue continues to get worse.
  • You do not get better as expected.

Where can you learn more?

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Care instructions adapted under license by your healthcare professional. If you have questions about a medical condition or this instruction, always ask your healthcare professional. Healthwise, Incorporated disclaims any warranty or liability for your use of this information.