“So what does it feel like?”

When someone asks me this question after I’ve revealed I have juvenile arthritis (JA), I’m taken aback a little. It’s as if they’re asking how soft my sweater feels. While they hear the word “arthritis” and automatically think of joint pain, my mind goes to the disease I deal with every day that causes many other symptoms.

Many people don’t realize that juvenile arthritis is an autoimmune disorder (meaning the immune system “attacks” the body) that causes inflammation in the joints and other body parts. They associate arthritis with achy knees. However, JA has an overarching impact on the body. While it does cause joint pain, it can also produce fatigue, fevers, brain fog, and other symptoms.

So what does JA feel like?

Joint pain is one of the most prominent symptoms of JA. The type of pain a child will experience depends on several factors, including their arthritis subtype, current disease activity, and presence of joint deterioration. Joints that are particularly inflamed or irritated may burn, throb, or feel like they’re being stabbed. During calm periods, the pain may feel dull and achy.

In my experience, my pain level fluctuated based on my daily activity level. The more tired I was, the greater my pain intensity. When I walked to the school bus in the morning, my feet always felt achy, as if I had already walked 100 miles. On my way home, the pain felt sharper — like I was walking barefoot on rocks.

Fatigue

While no two people experience arthritis pain in the same way, many have similar experiences with fatigue. Kids with arthritis may feel exhausted because of inflammation, medicine side effects, or lack of restful sleep. Regardless of the cause, fatigue levels can have a significant impact on one’s ability to function.

There are many ways to describe arthritis fatigue. It can feel like a dose of the flu that never goes away. I have days in which my body feels so heavy and weighed down it’s as if my hands and feet are cinder blocks. More often than not, I feel like I’m continually running on one hour’s sleep.

So many other feelings

While the two most overwhelming sensations I experienced with JA were pain and fatigue, there are many other symptoms. Joint stiffness can make you feel trapped in your own body, brain fog can put you in a daze, and psoriasis can drive you crazy. And there are still other things kids might deal with that I haven’t listed here.

It’s important to keep in mind that kids with JA don’t have a child’s version of osteoarthritis — instead, they have an inflammatory autoimmune disease. They deal with symptoms that affect their entire body. So please be patient and understanding with kids with arthritis — they’re going through a lot.

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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.