CFS can make you feel helpless, guilty, confused, angry, sad, or worthless. You may find that your family, friends, and employer are getting impatient the longer you have problems. You may have to deal with people who don't see the symptoms aren’t all in your head. You may feel that you don’t have the mental or physical strength needed to do all the things you need to. But remember, long term rest may only make things worse.
You need to take care of yourself. Making changes can help you feel better when CFS is more active. Here are some tips:
Some days you will feel better than others. Even on good days, you still must find a balance between rest and activity. Don’t use good days to make up for the bad days when you can’t do as much. This will tire you out, trigger symptoms, and cause you to be in bed trying to get better.
Listen to your body. At the first warning sign of fatigue, pain, or discomfort, stop what you're doing and rest. Lie down in a quiet place with your eyes closed. If you're very ill, your periods of activity will be short (maybe as short as 5 minutes) and your rest periods much longer. As you get better, you can slowly add more time to your activity periods.
If you were very active before your illness and engaged in competitive sports, it may be hard for you to choose activities that don’t need as much energy. So, choose a few activities that you enjoy and do them in moderation. Some exercise is good, even if it's only stretching. Avoid competitive sports when you’re sick. During these times, focus on some old or new hobbies that need less effort.
You may have a hard time working a partial or full day based on how severe your symptoms are. Talk it over with your employer and see if you can cut back on your work hours. Lost work hours can impact your finances. Be ready to scale back or compensate for the lost earnings. You may be able to get partial or total disability benefits. You may be able to do this through your employer, a private plan, or the Social Security Administration. Keep in mind this is a lengthy process. Also, disability earnings could be much less than your salary.
If you're in school, consider home tutoring, home schooling, a part time course load, or take remote or online courses. It's better to go slowly and let your body heal. If you push too hard, you can make things worse.
Your partner, family, and friends will likely have to make changes. You should also involve your employer and coworkers. It’s important they know the name and nature of your illness. This way, they can give support and help you cope.
You may need to make changes in your diet. This will help ease issues such as food allergies and gastrointestinal problems. A well-balanced diet can help you to feel better. If getting enough sleep is a problem, talk to your doctor lifestyle changes or the use of medicines. If you have problems with pain and mobility, talk with your health plan about a referral to a physical or occupational therapist.
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Treatment of ME/CFS. Centers for Disease Control and Prevention website. Available at: https://www.cdc.gov/me-cfs/treatment/index.html. Updated July 12, 2018. Accessed February 8, 2019.
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Last reviewed December 2018 by EBSCO Medical Review Board Marcin Chwistek, MD