Juvenile Fibromyalgia

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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Diagnosing Juvenile Fibromyalgia

Diagnosing fibromyalgia, whether in adults or children, is not always easy and it sometimes takes years to finally get an accurate diagnosis. Doctors who have little experience with JFM may tell parents their child just has “growing pains” and will outgrow it.

Juvenile fibromyalgia is generally classified as either:

• Juvenile Primary Fibromyalgia Syndrome – when it occurs by itself, without another rheumatic disease or musculoskeletal disorder.
• Secondary Juvenile Fibromyalgia – when it occurs along with another condition such as juvenile arthritis.

The process of diagnosing JFM is very similar to that of diagnosing FM in adults. After a complete medical exam and diagnostic tests to rule out other diseases, the following diagnostic criteria is used:

• Pain in three or more body areas for at least three months.
• Pain at five or more out of 18 possible tender points upon palpation.
• Additional symptoms may include sleep problems, fatigue, memory and concentration difficulties, gastrointestinal distress, hypersensitivity (to touch, temperature, sounds, light, scents, etc.), headaches, anxiety, depression and other symptoms common in adult FM.

The main difference between diagnosing fibromyalgia in children vs. adults is that children only need to have five tender points, while adults must have at least 11 tender points.

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Causes of Juvenile Fibromyalgia

Just as with adult FM, researchers have yet to find a definitive cause of juvenile fibromyalgia. There appears to be some kind of genetic link since we know that fibromyalgia often occurs in more than one family member, but an exact genetic cause has not yet been identified. It is worth noting, though, that the Cincinnati Children’s Hospital, which has a pediatric pain program, says approximately 75% of children diagnosed with JFM have a family member who also has FM.

While not the primary cause, JFM is often triggered by some kind of trauma. It may be a physical trauma like an illness or injury; or it could be an emotional trauma like a death in the family.

Prognosis of Juvenile Fibromyalgia

It was initially thought that JFM often improved and even went away in a few years, but new research has shown that juvenile fibromyalgia is likely to continue into adulthood. A 2014 report on the current status of research into JFM stated, “The importance of early and effective intervention is being recognized, as research has shown that symptoms of JFM tend to persist and do not resolve over time as was previously believed.”

For this reason, it is more important than ever that we continue to advocate for more fibromyalgia research in general and juvenile fibromyalgia research in particular.

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Treating Juvenile Fibromyalgia

Although there is no cure for JFM, a variety of treatments can help patients manage their symptoms and improve their overall quality of life. A multidisciplinary approach usually works best. Treatment options include:

• Exercise – A 2008 pilot study looked at the effects of aerobic exercise and qigong on JFM. The researchers concluded, “Children with FM tolerate moderate-intensity exercise without exacerbation of their disease. Significant improvements in physical function, FM symptoms, QOL [quality of life], and pain were demonstrated in both exercise groups; the aerobics group performed better in several measures compared with the qigong group.”

Water-based activities are particularly good for children with JFM because immersion in water promotes relaxation, reduces muscle fatigue and lessens pain perception. Water also provides resistance, which helps to increase strength and improve balance. Walking, biking, dance and other aerobic activities and sports are also good forms of exercise for children with JFM.

• Cognitive Behavioral Therapy – CBT is a form of talk therapy that can help children learn to filter out negative thoughts, identify what makes their symptoms worse and teach them to set limits to help control their symptoms. Some studies have found that CBT can be effective for children in reducing pain, improving fatigue and anxiety, improving sleep quality and reducing school absences.
• Sleep Hygiene – Getting enough quality deep sleep is essential and can go a long way toward reducing symptoms of JFM. Experts recommend avoiding sugary and caffeinated beverages and snacks before bedtime, turning off the TV and other electronic devices at bedtime, going to bed and getting up at the same time every day, and limited napping during the day.
• Good Nutrition – The bulk of a child with JFM’s diet should consist of fresh, whole, foods – particularly proteins, vegetables and healthy fats. It’s also important that they stay hydrated by drinking clean, filtered water.

Just as people with FM are hypersensitive to things like touch, temperature, sounds, lights and scents, they are also often hypersensitive to certain foods. Foods that have proven to be problematic for many people with FM include wheat/gluten, dairy, sugar, soy, caffeine, MSG, nightshade vegetables (tomatoes, white potatoes, eggplant and peppers), and anything artificial such as sweeteners, colors/dyes and preservatives.

• Nutritional Supplements – Many FM patients have found nutritional supplements to be helpful in reducing and controlling symptoms. For specific supplement recommendations, see “Nutritional Approaches in Fibromyalgia – Dr. Mark Pellegrino on Deficiencies, Symptoms, and Supplement Strategies” and “Dr. Charles Lapp’s Recommendations on Supplements for ME/CFS and Fibromyalgia.” Keep in mind that the dosages mentioned in these articles are intended for adults. Be sure to check with your child’s doctor before starting any supplements to find out the appropriate dosage for children and to make sure there are no dangerous drug interactions with any medications your child may be taking.
• Stress Reduction – Just as with adult FM, stress can exacerbate symptoms in JFM. Relaxation and breathing exercises, light massage, acupuncture, yoga, tai chi and similar disciplines can help reduce stress and improve symptoms for children with JFM.
• Medications – Thus far, there have been no studies conducted using medications to treat JFM, although there are some clinical trials currently underway. Physicians usually prefer to treat children with JFM with non-pharmacological therapies if possible.

When non-pharmacological therapies are not enough, the doctor may prescribe medication. Although three drugs have been approved for treating adults with FM (Lyrica, Cymbalta and Savella), they have not yet been tested on children. There are, however, anecdotal reports of some success using these medications with children. Other medications that may be prescribed include over-the-counter pain relievers (acetaminophen, ibuprofen, and naproxen sodium), the prescription pain reliever tramadol, antidepressants, anti-seizure medications and sleep aids.

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