By Karen Lee Richards*
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:
- 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.
- Fatigue. Episodic bouts with extreme fatigue may occur and the child will not want to do anything when this happens.
- Sleep problems. Difficulty falling asleep and frequent awakening may occur.
- 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.
- Abdominal pain. Frequent stomach aches and stomach pain, possibly accompanied by nausea. This may be early Irritable Bowel Syndrome.
- 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.
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.
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.
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.
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.
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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.
* Karen Lee Richards is ProHealth’s Editor-in-Chief. A fibromyalgia patient herself, she co-founded the nonprofit organization now known as the National Fibromyalgia Association (NFA) and served as its vice-president for eight years. She was also the executive editor of Fibromyalgia AWARE, the very first full-color, glossy magazine devoted to FM and other invisible illnesses. After leaving the NFA, Karen served as the Guide to Fibromyalgia and Chronic Fatigue Syndrome for the New York Times website About.com, and then for eight years as the Chronic Pain Health Guide for The HealthCentral Network.
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
Last Updated: 7/11/14
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