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What is it like to be a child with a fibromyalgia diagnosis?


It’s hard to get diagnosed with a disease that impacts the whole of your life. It’s harder to get diagnosed with a disease about which so little is known and the best treatments just help lessen symptoms, not eliminate. It’s hardest to get diagnosed with this disease when you are a child. Children and teens affected by fibromyalgia are in the minority, though they are still susceptible to the condition. In kids fibromyalgia is sometimes referred to as juvenile primary fibromyalgia syndrome. Doctors have seen an increase in fibromyalgia in pediatric patients, typically setting in around adolescence, which is on average between 11 and 15 years of age. One in six Americans of the 6 million Americans diagnosed with fibromyalgia is under eighteen years old.

Because fibromyalgia’s symptoms range from almost-not-there to completely debilitating, it’s hard to say on any given day whether the condition will impact a child’s routine a little or a lot. Most children diagnosed with fibromyalgia attend school regularly, but their activities are governed by how they feel that day and sometimes fibromyalgia is king.

Kids describing their fibromyalgia symptoms typically cite widespread muscle pain, labeling it “dull” or “burning.” Sometimes they use adjectives such as “shooting” or “throbbing.” The tender spots found in adults – the back of the neck, the hips, insides of the knees, elbows, shoulders, lower back – are also present in children, and the same test – if at least eleven of the eighteen spots hurt, fibromyalgia is a likely diagnosis – is used to determine whether or not a child is experiencing fibromyalgia.

The sleep problems that come along with fibromyalgia also give rise to things like restless legs syndrome and sleep apnea in children. Sleep deprivation might affect a child’s work at school, and it can also lead to general irritability and forgetfulness. If a child is struggling in school, it’s important to talk to the teacher and find solutions to help the student succeed in the classroom. Children finding themselves falling asleep in class or while doing homework should find tools to help them concentrate on their work. If sitting up to do class or homework is too tiring, see if it’s possible to do schoolwork in a reclined, relaxed position. A helpful tactic when it comes to doing schoolwork and even housework is to give children with fibromyalgia smaller, shorter tasks and workable goals. Taking smaller steps will keep them from getting too exhausted and help them feel a little better about what they can accomplish.

Places like Children’s Hospital in Boston are doing their best to provide care for children diagnosed with fibromyalgia by having their rheumatologists work closely with other specialists. Especially when working with children, it’s important to work with a team of doctors to ensure that every aspect of a child’s wellbeing is covered.

Sometimes therapy is an important element when providing care for a child with fibromyalgia. It can be hard being in pain all of the time, regardless of your age, and more so when your peers can run and play without getting exhausted. If you have a child with fibromyalgia, make sure to give them sufficient encouragement, support, and sympathy.