JA and Fatigue
What to do when weariness weighs down your child
By Linda J. Brown
The boundless energy of youth, that spark that keeps kids on the go, is something that fatigue steals from many children with juvenile arthritis (JA). And though it may require a bit of detective work from you, your child and your physician to get to the cause of your child’s fatigue, there are many things that can be done to alleviate fatigue and return the twinkle to your child’s eyes.
Some children with arthritis are very affected by fatigue while others are not. But in general, those with active disease, especially during flares, are more likely to feel fatigued. Kids with pauciarticular and oligoarticular disease don’t seem to have as much of a problem with it.
What causes fatigue?
Fatigue is a complex beast and several factors may be responsible for your child’s fatigue. These can range from his or her body’s way of dealing with the disease to inability to get good sleep.
“When the disease is active, we think it has to do with the toll of chronic inflammation on the body,” says Carol Wallace, MD, associate professor of pediatrics, University of Washington and Children’s Hospital & Regional Medical Center in Seattle.
Iron deficiency (anemia) can also produce fatigue. Keeping kids’ arthritis under control is important in this regard because chronic inflammation impairs how well the body utilizes iron and can worsen anemia. Jean Kotowski’s 12-year-old-son Danny from Naperville, Ill., was diagnosed with systemic juvenile rheumatoid arthritis (JRA) when he was 9 years old and he was very anemic. “As a young boy he always seemed tired and when we took him in for his kindergarten they noticed he was anemic,” says Jean. “We checkup didn’t realize it then but that might have been the start of everything with Danny.”
Another likely cause of fatigue is pain. “I think pain makes you very tired,” says Marisa Klein-Gitelman, MD, associate professor of pediatrics and head of the division of rheumatology at Children’s Memorial Hospital in Chicago. Pain and inflammation often seem to be linked. However, Dr. Klein-Gitelman points to children whose arthritis is not active but who have previous hip or knee damage and are in pain on a regular basis. Even without inflammation, they feel fatigued. In these cases it seems pain is the trigger.
Getting good Zzzs
Poor quality sleep can certainly cause fatigue in anyone but can be particularly tough for kids with arthritis. Research has shown that compared to healthy kids, children with arthritis often “have more difficulty falling asleep, they wake during the night and have difficulty falling back to sleep, and they wake up early in the morning and can’t go back to sleep,” says Sharron Docherty, PNP, assistant professor, Duke University, School of Nursing in Durham, N.C.
Docherty co-authored a paper in 2003 that reviewed what was known about sleep in children with JRA and was part of a research team that found that children with JRA had less slow wave sleep than kids without arthritis. “Slow-wave sleep is a restorative type of sleep where children get their rest and rejuvenation, and physiological functioning is renewed that affects their growth and development,” says Docherty.
A person’s emotional state can also affect their sleep. Carol Landis, RN and professor at the University of Washington, School of Nursing is leading a study comparing sleep quality of children ages 6 to 11 with active arthritis to those with inactive arthritis.
“We’ll be looking at relationships between sleep quality, depression and anxiety,” says Landis. “It may be the kids who are more emotionally distressed that have worse sleep.”
Teens with many challenging high school classes, and lots of homework or after school activities are at particular risk of not getting enough sleep. Dr. Klein-Gitelman sees some of her teen patients get into a cycle where they come home from school exhausted, take a two or three hour nap, then stay up late and don’t get enough sleep.
Huge potential impacts
Whatever fatigue’s origin, it can exact a large toll on a child’s quality of life. Fatigue can lead to daytime sleepiness, and trouble concentrating and staying awake in school. Landis’ study will look at how sleepy kids are during the day and how they perform in cognitive tests.
“If you’re fatigued you’re going to be irritable. You’re not going to interact with your friends or family as well. It’s harder to participate in athletics, your favorite hobbies and after-school activities, and to get your homework done. It just becomes this huge thing that sort of prevents you from being the person you are. So it really does affect every level of your day,” concludes Dr. Klein-Gitelman.
Talk to your doctor
If fatigue interferes with your child’s day-to-day functioning, you should bring it up to your rheumatologist. Depending upon the cause(s) of your child’s fatigue, here are some measures that may help:
Get the arthritis under better control.
Perhaps making a change in medication or treatment plan can help. Talk with your doctor about options. Reduced inflammation may also lessen pain.
Improve sleep. This may mean changing mattress types, trying a memory foam pad or maybe a waterbed, to get your child more comfortable. Maintain a regular sleep schedule, and avoid letting your child eat big meals and have caffeinated drinks before bed. Also, if possible, have your child take once a-day medications that can disturb sleep like prednisone and hydroxychloroquine, earlier in the day rather than taking them in the evening. Having a relaxing bedtime routine with time for a warm shower or bath, heating pads or warmed thermal packs applied to sore joints, reading or listening to quiet music can also help them wind down.
Docherty suggests that parents should help kids not worry about waking up during the night. If they wake, tell them to try to fall asleep for a few minutes then turn on their light and read a little. They’ll fall asleep faster than if they lie in the dark thinking about being awake.
Ensure that your child exercises.
“You can feel fatigued when you don’t exercise,”says Dr. Wallace. “Exercise gives you more energy, stamina, stronger muscles and can improve sleep.” Your child doesn’t have to participate in team sports. Walking, biking or swimming are great, and a rheumatologist or physical therapist can suggest many exercises.
Watch for emotional stresses.
Stress at school or at home can cause fatigue and poor sleep. Working with a therapist or psychologist to find ways to relieve some anxiety may help.
Feed your child a well-balanced diet.
Consider giving them a multivitamin if they’re picky eaters and don’t get all they should from their diet. Speaking to your doctor or a registered dietitian can help you figure out what your child may be lacking in their diet.
Ending fatigue
So what is the secret to ending fatigue? Working with your child and their doctor to find out what may be causing the fatigue and going from there can help tremendously. Danny Kotowski’s arthritis is now in remission, his fatigue is much improved and he loves to go out and play with the other kids.
His mom’s advice: “As far as fatigue, I think you’ve got to listen to your child and give them what they need because these kids know how to read their bodies.”
Source: Kids Get Arthritis Too, Arthritis Foundation. For more articles from this newsletter, visit www.arthritis.org/ja-kgat.
