A trip to Walt Disney World is never complete for me without a ride on Space Mountain. While the ride doesn’t have large drops or loops, it’s exciting because it’s ridden in total darkness. You never quite know whether you’re about to dart around the corner or fly down a small hill.
I’ve often heard others refer to juvenile arthritis (JA) as a roller coaster because of its highs (remissions) and lows (flares). But I don’t think that’s accurate, because on most roller coasters you can see the track in front of you. I think the unpredictability of JA is more like Space Mountain, where you are uncertain of what’s coming next.
An increase in JA symptoms is often called a flare-up. It can feel like they pop up out of nowhere. One day your child is kicking a ball, and the next they’re limping because their knees hurt.
Although some flare-ups are sudden, at times you may be able to predict when one is on the way. It may appear for an acute reason, such as missing doses of medication or injuring a joint. Or you may notice more subtle signs that a flare is on the way.
Juvenile arthritis can cause fatigue. Just before a flare, the fatigue can hit like a brick wall. I always know I’m about to flare when I feel like a zombie during the day and end up napping.
An abrupt change in your child’s routine may hint at flare fatigue. My mom knew my worst flares were on the way when I would fall asleep on the couch after school. But appearing lethargic wasn’t always a sure sign I was going to flare. Sometimes, it was just because I had a long day.
Lost in the fog
While brain fog isn’t unusual, you may notice it more when a flare is around the corner. The increase of inflammation, fatigue, and pain can make it hard to concentrate.
This symptom can be hard for others to see. You may not be able to see the fog, but you notice its emotional effects. Your child may seem frustrated or insecure, especially regarding homework.
One year, I swore the school janitor kept an eye on me. I was flaring off and on and had days in a row when I would drop my tray. Besides being embarrassing, it was discouraging because I knew I might be in a flare soon.
You should contact your child’s pediatric rheumatologist if you suspect a coming flare, particularly if the symptoms appear severe. The doctor may recommend coming in for labs to make sure there isn’t another issue. Every case of JA is unique, and every child needs different care.
JA can be wildly unpredictable. Small cues can sometimes tell whether your child’s disease is active. But subtle changes aren’t always negative. They can show a positive difference.
A year ago, I started a new treatment. After a few weeks, I noticed my energy level slowly rising. I was taking shorter naps and was sometimes able to stay up later than usual. Keeping track of small things such as a change in routine helped me realize that I was slowly getting better. It encouraged me to stay positive and stick to my treatment plan.
Note: Juvenile Arthritis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Juvenile Arthritis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to juvenile arthritis.