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Juvenile Fibromyalgia

Fibromyalgia in Children and Teens Although fibromyalgia is usually thought of as an illness that affects primarily adult women, researchers are learning that a surprising number of children are also affected. Some estimates say as many as 6% of children may have fibromyalgia. It can affect children of all ages but is most often diagnosed in the teen years.

Juvenile fibromyalgia (JFM) causes widespread pain, fatigue, sleep problems, cognitive difficulties and numerous other symptoms. It can take a huge toll on both the child and the family. Children with JFM may miss a lot of school and have difficulty participating in sports and other activities. Even when they are able to go to school, they may have problems with memory and concentration. These limitations may also lead to anxiety and depression.

Prevalence of Juvenile Fibromyalgia

In a 2007 interview with the National Fibromyalgia and Chronic Pain Association, Dr. Susmita Kashikar-Zuck, Associate Professor of Pediatrics at the Cincinnati Children's Hospital Medical Center in Cincinnati, Ohio shared this information about the prevalence of juvenile fibromyalgia:
  • Studies in Finland, Israel and Mexico have found that between 2-6 percent of school-aged children have symptoms of widespread musculoskeletal pain.

  • In pediatric rheumatology clinics, JFM comprises about 8% or more of new referrals.

  • In her hospital, they see about 40-45 new JFM patients per year.

  • Just as in adults, juvenile fibromyalgia affects more girls than boys. In her clinics, about 85% of JFM patients are girls.

Symptoms of Juvenile Fibromyalgia

Chronic widespread body pain is the hallmark symptom of fibromyalgia for both children and adults. However, because it's all they know, children sometimes think pain is normal so they don't complain about it. In his book Fibromyalgia, Up Close and Personal, fibromyalgia expert (and patient) Dr. Mark Pellegrino says,

In children there may be generalized widespread pain, but usually there are some common initial symptoms that may be part of the "prodromal" (preceding) state that can ultimately turn into fibromyalgia. These symptoms include:
  1. Leg pains (may be called growing pains). This appears to be a form of restless leg syndrome in children and is especially bothersome at night.

  2. Fatigue. Episodic bouts with extreme fatigue may occur and the child will not want to do anything when this happens.

  3. Sleep problems. Difficulty falling asleep and frequent awakening may occur.

  4. Headaches. Frequent migraine headaches or tension headaches may occur with neck and shoulder pain or even in the absence of any other pain. Allergies and dry eyes may be present and contributing to the headaches.

  5. Abdominal pain. Frequent stomach aches and stomach pain, possibly accompanied by nausea. This may be early Irritable Bowel Syndrome.

  6. Cognitive difficulties. This can include difficulty with concentration and attention in school, difficulty focusing on a topic, difficulty with reading and reading comprehension, and complaints about vision. School teachers will often notice these difficulties first and mention them to the parents.
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What Parents Can Do to Help Their Child

It's not always easy to be the parent of a child with JFM. It's heart-breaking to see your child suffer and you may often feel helpless in your desire to make him feel better. As a parent of a child with JFM, you have to fill many roles - comforter, coach, cheerleader, advocate and disciplinarian. You need to strike just the right balance between consoling him when he's discouraged or in pain and pushing him to do all he can do.

Learn everything you can about fibromyalgia from reputable, reliable sources. Consider visiting or at least connecting with a local FM support group. Most support groups are very happy to have family members join them and they can be excellent sources for information about FM-knowledgeable doctors and other resources in your area that may be helpful.

Be proactive in advocating for your child. That may mean getting a second, third or fourth opinion (or even more) if your child's doctor is dismissing her symptoms as just laziness or growing pains. It may mean pressing your child's school to make accommodations like rescheduling her classes or providing alternative activities for gym class.

Understand that JFM can be unpredictable - your child will have good days and bad days. Your patience through these ups and downs will make it easier for your child to learn to cope with them.

Encourage your child to participate in as many "normal" activities as possible. It's easy for children with JFM to feel "different" and isolated because they can't do everything other kids their age do, so it's particularly important that they spend time with their friends.

Dr. Pellegrino says, "I find that kids are more resilient and adaptable to change than adults. Their youth gives them a better chance at controlling the fibromyalgia and maintaining a stable baseline or remission. I remind the parents not to project their fears onto their child, because each child is unique and the fibromyalgia has a unique identity as well.

"Even if the mother is having a difficult time with her fibromyalgia, the child can reach a stage where the FM is hardly a bother. Most of the children I've seen have done better over time, and I am hopeful that they will continue to do well."

Below are a few articles that offer some excellent insights into the challenges and rewards of parenting a child with JFM.

Further Reading

How Can I Help My Child with Fibromyalgia?

Parenting a Child with FM

Fibromyalgia in Children & Teens - Risk Factors, Symptoms and Treatment

A Young Person's Perspective on Fibromyalgia

A Survey of Conventional and Complementary Therapies Used by Youth with Juvenile-Onset Fibromyalgia

More Juvenile Fibromyalgia Articles »

Last Updated: 7/11/14
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