Understanding Juvenile Fibromyalgia

It's Uncommon but Possible in Kids & Teens

Teenage girl in a sweater looking like she doesn't feel well.
Kids and teenagers can have fibromyalgia. VOISIN/PHANIE/Getty Images

Fibromyalgia (FMS) is a chronic pain condition that's most often diagnosed in women of child-bearing age or older. However, anyone can get it—and that includes kids and teenagers.

In kids, this illness is called juvenile fibromyalgia syndrome (JFMS). You might also come across juvenile primary fibromyalgia syndrome. "Primary," in that context, means that it doesn't accompany another rheumatologic illness such as arthritis or lupus.

If it does accompany another such illness, the fibromyalgia is called "secondary."

We don't know a lot about JFMS, and many doctors aren't aware that young people can have this condition. However, we're learning more all the time and awareness and acceptance in the medical community is on the rise.

It's scary to suspect your child has JFMS or to have them diagnosed with it. Try to keep a few important points in mind:

  • JFMS is NOT a terminal illness
  • multiple treatment options are available
  • with proper treatment and management, your child can live a full life

Before looking at the information specifically for JFMS, it's important to get a basic understanding of FMS.

In FMS, the nervous system misfires when it comes to pain. It amplifies pain signals and turns signals that should just be unpleasant into pain.

Because pain is not coming from a specific joint or muscle, it can turn up anywhere in the body at any time.

Pain may move from one area to the other, be constant in specific areas, or both. The severity can fluctuate wildly as well.

All forms of FMS can involve dozens of symptoms which also have widely varying severity. In some people, symptoms may be fairly consistent, but in others they may come and go.

It's common to see a pattern of flares (periods of severe symptoms) and remissions (times when symptoms are reduced or absent.)

While FMS has traditionally been treated by rheumatologists, as researchers have found more and more neurological features, it's begun to be treated by neurologists as well.

FMS also impacts the immune system and hormones. This causes a host of symptoms that may appear to have nothing to do with each other and can make the illness seem bizarre.

Symptoms of Juvenile Fibromyalgia

The primary symptoms of JFMS include:

Less common symptoms can include:

  • Cognitive problems, including difficulty concentrating (called "fibro fog")
  • Dizziness/light-headedness

Many cases of JFMS include overlapping conditions. They're sometimes confused for symptoms of JFMS but may need to be diagnosed and treated separately. Common overlapping conditions include:

Causes & Risk Factors

JFMS isn't very common. Researchers estimate that between one and two percent of school-aged children may have it.

We do know is that JFMS is most commonly diagnosed in the teenage years, and girls are more likely than boys to be diagnosed with it.

A lot of kids with this condition have a close family member with adult FMS, often their mother. Because of this, experts suspect there's a genetic link but have yet to pin it down.

Some cases of JFMS appear to be triggered by infections, serious physical injury, or emotional trauma. Others (secondary cases) may be caused in part by other conditions that cause chronic pain. This is believed to be due to changes in the brain that can re-structure the areas that deal with pain processing.

Diagnosing Juvenile Fibromyalgia

There's no blood test or scan that can diagnose JFMS, but your doctor will need to do several tests to rule out other potential causes of your child's symptoms.

A diagnosis of JFMS is generally based on a physical exam, medical history, and diagnostic criteria. Your child must have all of the major criteria and at least three of the minor criteria below.

Major criteria:

  • Widespread pain in three or more places for at least three months
  • Absence of another cause for symptoms
  • Normal test results for similar conditions
  • Pain in five of the 18 FMS tender points

Minor criteria

  • Chronic anxiety or tension
  • Fatigue
  • Poor sleep
  • Chronic headaches
  • IBS
  • Subjective soft-tissue swelling
  • Pain that's worsened by physical activity
  • Pain that's worsened by changes in weather
  • Pain that's worsened by anxiety and stress

Some doctors may use the adult FMS diagnostic criteria, which have been found to be nearly as accurate in kids as the JFMS criteria.

If your doctor isn't familiar with JFMS and how it's diagnosed, you may want to see a specialist. Pediatric rheumatologists have more training in recognizing and diagnosing this condition.

Treating Juvenile Fibromyalgia

The recommended treatment approach for JFMS is a combination of several treatments, and it usually involves several medical practitioners. There is no cure for JFMS, so treatments are aimed at reducing symptoms and improving functionality.

Some treatments have been studied specifically for JFMS, but doctors also use treatments that have been studied only in adult FMS.

Because the specific symptoms and their severity can vary widely, treatment should be tailored to the individual. Treatment options include:

  • medications
  • nutritional supplements
  • physical therapy
  • a specially structured exercise program
  • cognitive behavioral therapy
  • support groups

Medications often include non-addictive painkillers, SSRI/SNRI antidepressants, low-dose tricyclic antidepressants, muscle relaxants, anti-inflammatories and sleep aids.

Some popular supplements for FMS include:

Many other supplements are used for this condition as well, and some are used based on symptom.

Physical therapy can help stretch and strengthen muscles and improve muscle tone, all of which can help reduce pain. It's important that you choose a physical therapist who understands FMS.

Exercise is considered key to treating all forms of FMS. However, it must be tailored to the fitness and exercise tolerance level of the child. The length and intensity of workouts should be increased very slowly to avoid triggering a symptom flare.

Cognitive behavioral therapy (CBT) is the JFMS treatment that's gotten the most attention from researchers. It involves educating the child about emotional coping strategies as well as ways to manage the condition, such as pacing, good sleep habits, and following treatment regimens. Not all research agrees, but the preponderance of studies point to CBT as an effective treatment for JFMS.

Some research suggests that an exercise program combined with CBT may be especially beneficial.

Support groups, especially those aimed at the appropriate age group, can help prevent feelings of isolation and being "different." If you don't have access to support groups, you may be able to find one online that's a good fit for your child.

Finding the best set of treatments for a child with JFMS takes time and experimentation. It's important for both parents and children to understand that not all treatments will work and there are likely to be setbacks along the way.

What's the Prognosis?

The prognosis for children with JFMS is actually better than for adults with FMS. Some kids recover well and have significantly milder symptoms as adults. Those who find and stick to effective treatment/management strategies may not even meet diagnostic criteria after a few years.

Some, however, may continue to have symptoms into adulthood. It's also possible for symptoms to largely go away, only to come back later in life.

Regardless of what happens, it's important to remember than many people with FMS lead full, productive, happy lives.

Special Challenges of Juvenile Fibromyalgia

Kids with JFMS can face a lot of problems because of their illness. They may feel "freakish" because they're not like their friends and classmates. They may feel isolated because they have to withdraw from a lot of activities. Studies show that they miss a lot of school, which can lead to academic problems and stress.

Additionally, they may have adults in their life who question whether they're actually sick. People may view them as lazy and trying to get out of work. The emotional impact of these attitudes can be significant and can impair the child's ability to cope with the condition, physically and emotionally.

If your child misses a lot of school, you may want to explore options such as tutoring, online school, or home schooling.

When a child is sick, it impacts the entire family. Complicating the matter, because FMS tends to run in families, a lot of kids with JFMS have a parent with FMS. It may be beneficial for the entire family to have counseling in order to deal with the problems and hardships involved.

Juvenile FMS Compared to Adult FMS

Because we don't have a lot of information specifically about JFMS, you and your doctor will likely need to rely on information on the adult form of the illness. They're generally quite similar, with a few key differences. In JFMS:

  • Fewer tender points are required for a diagnosis
  • Sleep disturbance tends to be greater
  • Pain tends to be lesser
  • The prognosis is better  
  • Inflammation may be higher
  • Some medications are inappropriate for children, or lower dosages may be needed
  • Special attention needs to be paid to relationships with peers and family members

Research suggests that kids with JFMS who also experience anxiety or depression have the hardest time functioning.

As a parent, it's important for you to learn how to take care of your child with JFMS and also to advocate for them with extended family, school personnel, and other people they're around. Your knowledge, support, and love can go a long way when it comes to helping your child live with this illness.

Sources:

Goulart R, et al. Revista brasileira de reumatologia. 2016 Jan-Feb;56(1):69-74. Psychological aspects of juvenile fibromyalgia syndrome: a literature review.

Kashikar-Zuck S, et al. Clinical journal of pain. 2016 Jan;32(1):70-81. A qualitative examination of a new combined cognitive-behavioral and neuromuscular training intervention for juvenile fibromyalgia.

Tesher MS. Pediatric annals. 2015 Jun;44(6):e136-41. Juvenile fibromyalgia: a multidisciplinary approach to treatment.

Ting TV, et al. Journal of pediatrics. 2016 Feb;169:181-7.e1. 2010 American College of Rheumatology adult fibromyalgia criteria for us in an adolescent female population with juvenile fibromyalgia.

Tran ST, et al. Arthritis care & research. 2016 Jun 22. [Epub ahead of print] Preliminary outcomes of a cross-site cognitive-behavioral and neuromuscular integrative training intervention for juvenile fibromyalgia.

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