Fibromyalgia Basics

Fibromyalgia in Children & Teens

Although most fibromyalgia research focuses on adults, 2-5 percent of children and teens struggle with this disease. Studies show that the impact of fibromyalgia is worse than all other childhood rheumatic conditions. The average patient misses three days per month of school and some kids are homebound. Two years will often lapse before a diagnosis is made, which can be catastrophic for a young person’s emotional and functional development.

Adolescents with fibromyalgia are seen as being isolated and more emotionally sensitive than their peers … and why wouldn’t they be? These youngsters are saddled with widespread pain, disrupted sleep, feelings of exhaustion, and other symptoms that are difficult to put into any rational context. This leads to fewer friends, which further hampers social development.

A young developing body needs plenty of daily exercise to ensure that the growing musculoskeletal structures become strong and healthy. Yet diffuse aching and sleepless nights can quickly put children and teens at high risk of becoming deconditioned. In turn, this leads to losses in strength, which can impair posture (needed for sitting in class) and coordination (essential for getting around and preventing falls).

Making the Diagnosis

The typical age of onset of fibromyalgia in childhood is 12-13 years old, but many children may develop the illness in first or second grade. The diagnostic criteria used for adults can be applied to children. But if the symptoms crop up in early grade school, it might be difficult for the child to endorse the various symptom ratings. Therefore, an alternative method of diagnosis may be used:

• generalized muscle pain or aching at three or more body sites for more than three months
• normal laboratory tests and the absence of another condition that might explain the pain
• three or more of the associated symptoms, such as fatigue, irritable bowel, sleep disturbance, difficulty concentrating, or headaches

Studies show that fibromyalgia runs in families and mothers of children with this disease are four times more likely to have it themselves. So, if you are a parent who suspects your child might have fibromyalgia, you should know about six common reasons that may delay diagnosis (see below). Being aware of these diagnostic uncertainties will help you counter them so that you can move on with advocating for your child’s medical care and quality education.

1. Some physicians may not be aware that children and teens get fibromyalgia because most studies in the medical journals deal with adult patients.
2. Doctors and counselors may be convinced that your child’s symptoms are caused by depression. If you doubt your objectivity as a loving parent, get a second opinion.
3. Symptoms in adolescents may wax and wane, while they are much more persistent and stable in adulthood.
4. The symptoms may not be as obvious among so many other changes in mental and physical abilities as a child grows and matures.
5. Your child may start out complaining of nighttime growing pains, which they will eventually outgrow. But don’t confuse this source of discomfort with fibromyalgia pain that occurs during the day.
6. Young people often overcompensate when slowed down by unknown health issues, so they may not seem ill until they collapse or their pain is unbearable.

If you are still uncertain about whether your child is starting to develop fibromyalgia or whether they have been given the correct diagnosis, here are a few telltale signs:

• Forcing your child to wake up in the morning is more akin to pulling teeth. And once you get them out of bed, they take forever to get ready for school. Your child may be in a daze due to lack of good sleep.
• You detect a change in behavioral patterns, uncharacteristic of your child. Perhaps they appear more irritable. This could be due to the discomfort and increased level of fatigue.
• There could be several reasons why a child might complain of gym class or drop out of a soccer game during the first quarter, and it may have nothing to do with fibromyalgia. However, if you take them out for an activity they love (say, skating) and they opt to sit on the sidelines after 15 minutes, you know they are not bluffing about the aches caused by intense activity.
• When working on homework assignments with your child, they wiggle in their seat and annoyingly tap their fingers on the table. You ask them to sit still, but they deny the fidgeting or say they are too tired. This body language may be a sign that they are struggling to stay awake or they can’t get comfortable because of the pain.

An accurate diagnosis may not prevent health complications and the treatments will only relieve the symptoms somewhat. However, the diagnosis is essential for healthy emotional development and long-range educational planning. It also reduces your child’s insecurities by giving them confirmation that they are not imagining their symptoms. In addition to being a necessary step for getting medical care, it is also required for enlisting the help of teachers and tutors.

Getting Medical Care

Treatment is to target the most troublesome symptoms and due to the age of the patient, medications are used sparingly. The key therapeutic approaches are described below.

Rest: One of the most effective treatments for pain and fatigue is ordinary rest. Taking a short nap during lunch can recharge the brain to aid with attention and learning. It also relieves the strain on neck and shoulder muscles caused by sitting in a classroom all day. While short naps are great, too much rest can lead to deconditioning, and this can snowball into more pain and fatigue.

Sleep hygiene: Establish a bedtime routine that is done at the same time each night. For example, a warm bath (helps ease pain and aids sleep), a light snack, then brush teeth, a bedtime story (or a short audio book) and lights out at 8:00 p.m. each night. The room should have block-out drapes and children should have their own bed, if possible. In fact, extra effort should go into making the bed as comfortable as possible to ease nighttime pain.

Activity/Exercise: Encourage light exercise, such as walking. Also find movement therapies that are enjoyable (every child or teen is different). If muscles are deconditioned, consider warm water therapy aerobics … at least to begin with. If joint hypermobility is a problem, seek the help of a physical therapist who can teach methods for protecting the joints. Over stretching hypermobile joints can flare up the pain. Therapists may also teach easy techniques for keeping postural muscles toned.

Muscle Soreness: Use heat a wrap around the neck and shoulders while doing homework. Most schoolwork requires a lot of forward head movement (i.e., looking down), which can strain the neck and trigger headaches. Even the repetitive strain of typing into a keyboard is hard on the shoulders, arms, wrists, and hands. Make sure your child’s work environment is fully supported with pillows and cushions to take the strain off sore muscles. If the pain gets out of hand, a gentle massage from a skilled therapist or parent may help.

Medications: Most of the medications prescribed for fibromyalgia have been tested in adults, which limits the options available for children. One of the more common medications, cyclobenzaprine, is a muscle relaxant taken in a low dose at bedtime (e.g., 5-10 mg/night). It usually helps with sleep, which may benefit pain.

Many serotonin-boosting medications, including duloxetine, have a black-box warning for use in people under 18 years old. What does this mean? They run a higher risk of suicide when taking these drugs, so you may want to avoid them. Anti-seizure medications used for pain, such as pregabalin and gabapentin, may be options in low doses. However, they have only been tested in small trials in young people and did not provide noticeable benefit. But, your child’s individual response may be different.

Treat Associated Symptoms: Irritable bowel and headaches are common and can keep a child awake at night. Talk to your doctor about suitable digestive aids for your child. As for headaches, they are often caused by tight muscles in the neck and shoulders. Application of heat to the area with regular gentle stretching may help.

Cognitive Behavioral Therapy (CBT): With limited medications available for the young, developing mind, it is essential to learn how to cope with the many symptoms of fibromyalgia. This condition is mind-boggling for adults to manage, so just think how frightening it must be for a young person who is still trying to figure out who they want to be in life! CBT includes 6-8 weekly sessions with a psychologist who teaches relaxation approaches, pacing activities to conserve energy, and problem-solving skills.

The cost of CBT can add up. Call around to community hospitals, organizations, and treatment centers who may offer group CBT sessions for children and teens with chronic illnesses (such as rheumatic diseases). In fact, your child may prefer a kid-friendly environment and can benefit from meeting others who can relate to what they are going through. 

Social Support and Development: A fibromyalgia diagnosis does not mean life comes to a screeching halt. Children can learn to cope with the symptoms, so they can return to the business of growing, learning, and just being a regular kid. Try to help your child develop a positive outlook by emphasizing ability, not disability. Encourage visits from your child’s friends, perhaps by supplying special snacks when they come over. Social support is essential for all people with chronic illnesses, young or old. 

School and Learning

If a child misses too much school, they will become socially isolated and lose their self-confidence. Yet, fibromyalgia imposes physical limitations that make it harder for them to pay attention. Many also have a cognitive dysfunction, which reflects the brain’s reduced ability to concentrate and retain information. Parents need to ensure that their child gets all the extra help allowed by law (in the United States it is called Individuals with Disabilities Education Act or IDEA). 

When parents are not around, students need to learn how to speak up if they need extra time on an assignment or ask for a rest break if their back is hurting. Sometimes, the way the special request is made will make a difference. Coach your child to ask for extra help with class work using polite phasing, such as, “May I finish this assignment tomorrow, I can’t seem to concentrate today.” Teachers are overwhelmed, so make sure requests do not sound demanding or disrespectful. 

Getting the appropriate school learning accommodations for your child can become a balancing act. On one hand, you want them to receive as much assistance as possible to learn, but too much can actually backfire. If your child is constantly being pulled out of regular class for special reading groups or other sessions, their peers may heckle and tease them. In addition, that special reading group might mean that your child receives less time in math or science.

If you are doing all you can at home to help your child keep up with their peers, education-wise, check out your child’s rights under IDEA. If you live outside the United States, hopefully your government has a similar law in place to help students with learning problems. Smart KIDS Learning Disabilities is an organization with useful information about IDEA on their website at www.smartkidswithld.org.

Children and teens with fibromyalgia may have two aspects associated with their learning disabilities: physical and mental. Examples of each are listed below.

Physical Limitations: discomfort caused by prolonged sitting, fatigue due to lack of sleep, irritable stomach/bowel (need for frequent restroom breaks), or sensitivity to lights (including computer screens) and odors (such as those in science class). 

Cognitive Dysfunction: difficulty processing verbal or visual information (or both), trouble focusing or paying attention, word-finding problems and substitution of unrelated words, trouble with spatial relationships between objects and events (making graphs or charts harder to process), can’t hang onto information (quickly forgets it), and reduced alertness (brain is in a fog).

Ensuring that your child receives a quality education, along with learning ways to cope with their fibromyalgia symptoms early in life, can be challenging and rewarding. Parents need to have a strong support network, especially if one of them also has fibromyalgia. Check the internet for support organizations that offer advice on coping with the demands of parenting a child with special needs so you avoid burnout. It will help you be there for your child when they need you the most.