When Kids Have Symptoms of Fibromyalgia or ME/CFS

It's horrible when anyone develops fibromyalgia or chronic fatigue syndrome, but it's even worse to hear about it in a child. Having to grow up with the limitations imposed by these conditions, and to deal with disbelief in people around you — it's awful to think about.

No parent wants to consider chronic illness in their child, but it's a reality too many of us have to face at some time.

Mother holds her sick daughter.

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When Symptoms Begin

Parents are put in an especially tough position when their kids start to complain about the seemingly random and bizarre symptoms of these illnesses. Let's face it, it can be hard to take kids seriously sometimes. It seems like they get hurt a dozen times a day, especially when they're little and don't understand the difference between a bruise and a major injury. And what parent hasn't seen a child go from hobbling around to running and jumping in about twenty minutes?

When you have fibromyalgia or chronic fatigue syndrome, your kids may mimic your symptoms, too. After all, it's what they see all the time. They're bound to pick up some of our behaviors, and because we have to react to the first small symptoms of a possible flare, they may believe that they, too, need to go lie down at the first hint of a symptom.

Walking a Fine Line

The sad fact is, when you have these conditions, your kids are automatically at high risk for developing them as well, simply because you're their parent. Knowing that can make us paranoid. After all, when the illness is at the center of your life, it's easy to see it everywhere. That means we have to walk the fine line between under-reacting and over-reacting to our kids' aches and ailments.

Now imagine a parent who's not familiar with these conditions, how hard it would be to believe the child who says they're having a strange array of symptoms, especially in the face of doctors who say nothing is wrong.

It takes a special parent to recognize what's going on in their child for what it is, and then fight for what's best for that child. Here's a comment from one such parent:

"My 11-year-old son was not believed when we started our journey in search of a diagnosis. I was told that he simply had a social issue and wanted to avoid school and that he suffered from a simple and common case of 'post-viral' syndrome and constipation. Well, there is nothing common or simple about his disease which has plagued him for more than one year and has prevented him from going to school. His huge smile is dim now but thankfully his enthusiasm for life is still here. He believes, thanks to the doctors, that he will be well by the eighteen-month marker but my own investigation finds that statistically, this may not happen.

I have had to fight with the school system and ALL of the doctors to pursue the best things for my son. If it weren't for my own medical background and love for my child I know that I would have believed all of the cold doctors and simply would have pushed my son to go back to school. I have not wavered in my belief in my son and I am so very glad!!"

Hats off to that mother! If he doesn't already, someday that boy will recognize the positive role her understanding and faith in him played.

Juvenile Fibromyalgia and Chronic Fatigue Syndrome

It's been a long haul to get juvenile fibromyalgia and chronic fatigue syndrome recognized and accepted by the medical community. Today, though, they are both gaining more and more recognition, and we're learning more about them all the time. That's good news for sick kids, and for the parents who agonize over how their lives will go.

Also on the encouraging side is that kids with these illnesses are more likely to recover from them than adults are.

In fact, these illnesses can be substantially different in children, so even if you have it, too, it pays to learn about the juvenile form. Also, keep in mind that every case is different.

A Word From Verywell

As parents, we can feel helpless when something is wrong with our children that we can't fix, and yes, chronic illness is in that category. About the best we can do is listen, learn about the condition(s) they have, support them, advocate for them when necessary, and help them live as full a life as they can.

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