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Kids and parents answer your questions

What do Chronic Fatigue Syndrome (CFS) symptoms feel like?

Sleepy ~ Rebecca, age 8

Tired, painful! ~ Megan, age 13

With CFS, the fatigue that accompanies it is a little like the fatigue that comes a long with the flu - except this doesn't go away. A lot of days I feel unable to function normally, because I feel like I can barely move out of bed; and the headaches often cause trouble for me to concentrate on things. ~ Chrissy, age 17 ½

The exhaustion feels like an overwhelming wave of fatigue. It can come at any moment, without any warning. It knocks me off my feet and wipes me out. It feels like every ounce of energy has been sucked out of me. At night my body is physically tired, but my brain is still wide-awake. Being sleepy and being tired are two very different things. So at night, I am tired, but not sleepy, so I have trouble falling asleep. ~ Lauren, age 16

CFS symptoms drive me crazy! I never know how I'm going to feel from one day to the next and I feel as if I have no control over my body. I will be tired, dizzy, and have tons of brain fog, and then sometimes problems become more acute ~ Sarah, age 15

I get extremely exhausted with very little (or sometimes no) physical activity and have a lot of trouble concentrating on things that used to be very simple for me. The lymph nodes in my armpits and sometimes on my neck can swell to the point where it's actually painful. My muscles are sometimes very weak and in a lot of pain in the morning and I can have difficulties doing everyday things such as combing my hair. Along with my CFS I get a terrible stomachaches that make it impossible for me to eat like a normal person, I spend a good part of the day feeling sick. ~ Heather, age 18

Nicky has said she feels trapped in her own body, and that at times she feels like a broken doll. ~ Collette, mom of 12-year-old

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The Pediatric Network is run by Mary Robinson and Rebecca Moore Leibowitz. Our focus is limited to our supportive e-mail group. Although we no longer publish a newsletter, an archive of our articles and resources is available online. We encourage you to ask your health care provider about the newest medical information and how it may apply to you.

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