Juvenile Primary Fibromyalgia Syndrome (JPFS)

Exercise helps children with JPFS

Juvenile primary fibromyalgia syndrome (JPFS) is a condition that causes children and teenagers to experience musculoskeletal pain “all over” and fatigue as their main symptoms.  Unfortunately, we still don’t know what causes JPFS. This condition is also sometimes called chronic widespread pain or pain amplification, just a few of the other names you might hear involving similar symptoms. 

Patients with JPFS are sometimes cared for by a rheumatologist because of the symptoms of muscle and joint pain. Someone with primary fibromyalgia does not have any other chronic illness or illnesses. It is important to know that there are some patients with other chronic diseases (like arthritis or lupus) who develop similar symptoms, and we call that secondary fibromyalgia.

JPFS usually happens in the teenage years. Females are more likely than males to be diagnosed with JPFS. Many patients (up to 75 percent) will have a family member with a diagnosis of fibromyalgia.

Common symptoms, in addition to musculoskeletal pain and fatigue, include disturbed (not restful) sleep, morning stiffness, headaches, abdominal pain and irritable bowel symptoms, depression, anxiety or tension, tight muscles and brief periods of swelling. Less common symptoms include dizziness, light-headedness, numbness or tingling, and trouble concentrating.

Patients with JPFS are likely to feel pain when pressure is applied to particular places on the body called "tender points." These places may stay tender when pressure is applied even after many of the other symptoms of JPFS have significantly improved.

We don’t know the exact cause of JPFS. We do know that often fibromyalgia occurs in families, but so far, a genetic cause has not been found. Abnormalities of neurotransmitters (chemicals that send pain signals to the brain) and some hormones have been found in adults with fibromyalgia, but we do not know if these abnormalities actually cause JPFS.

What we see in JPFS patients is that most are stuck in a "vicious cycle" of pain, fatigue, poor sleep and decreased exercise. Each of these pieces (pain, fatigue, poor sleep, little to no exercise) affects one another.

For example, pain causes poor sleep and decreased exercise. In turn, poor sleep increases a patient's experience of pain. Then, because you have more pain, it becomes harder to sleep. As one continues to have poor sleep, fatigue becomes a major factor. With fatigue, one is even less likely to exercise. Lack of exercise leads to a poor quality of sleep and increased lethargy / fatigue. Lack of exercise also increases the chances that a person will experience pain.

One can easily see that this cycle could be very hard to break.

Often the cycle is triggered by something, like an Injury, illness or stress. Relationships at home and at school, school work / studies, a death in the family, are just some of the possible stressful triggers. Also, anything that causes pain or causes someone to stop his or her normal pattern of exercise can also trigger JPFS. At times, some patients have no reason for a flare-up.

The main sleep problem in JPFS is experiencing non-restorative sleep (waking up from sleep still feeling tired). Some patients may even sleep many hours a day but wake up still feeling tired. Others have trouble falling asleep or wake up often throughout the night. Some patients have excessive movement of their limbs during sleep. Many patients nap during the day because they are so tired. All of these patients are experiencing non-restorative sleep.

Proven treatments for JPFS are education about the disease and cognitive behavioral therapy (CBT). Other medication treatments that are proven to work in adults with fibromyalgia have been used with some success in children, but have not been formally approved. There are clinical trials actively studying the effects of these medicines in children with JPFS.

CBT is a program that helps children learn to decrease their experience of pain by helping them to understand their triggers for pain and how to prevent them. CBT also helps to educate patients on how to respond or cope with their pain. Techniques include relaxation, imagery, positive thinking, and pacing. CBT is best learned from a trained psychologist.

Exercise is an important part of treatment in JPFS and has proven quite successful in clinical trials in adults. The most effective exercise is aerobic exercise, meaning any exercise in which the heart rate is increased. Examples include walking, biking, swimming, running, rowing or using an elliptical trainer or stair stepper. Some sports like basketball, soccer, and track provide enough aerobic exercise. Other sports such as baseball, softball and volleyball may be less effective.

Medications that have been shown to help adults with fibromyalgia include amitriptyline (Elavil), cyclobenzaprine (Flexeril), fluoxetine (Prozac), and venlafaxine (Effexor). Only recently has the Food and Drug Administration (FDA) approved medications for the treatment of adult fibromyalgia. These medicines include duloxetine (Cymbalta), milnacipran (Savella), and pregabalin (Lyrica). These medications mostly work by changing chemical signaling by the nerves.

Clinical drug trials are under way to test the use of these drugs in JPFS. Some of these drugs are also used to treat depression and anxiety. Nonsteroidal anti-inflammatory medications (ibuprofen, Advil, Motrin, Aleve) have not been proven effective in the long-term treatment of fibromyalgia but may provide temporary pain relief.

It is very common that exercise will lead to increased pain especially early on in the treatment of JPFS. Some of this pain is from your muscles being out of shape. The other pain is a result of fibromyalgia. It is important to start slow with exercise and to gradually build up to at least 30 minutes, three to five times a week. The most important part of exercise is to do it regularly. This means that exercising daily, even if it is for a short time, is very helpful in JPFS.

Forming a habit of exercise and making it a part of your lifestyle is extremely important to your recovery and to prevent future flare-ups.

Some symptoms, such as fatigue and disturbed sleep, are very similar to symptoms experienced by patients with depression. Most patients with JPFS do not meet criteria for major depression, but some patients do. Some patients are also very anxious and tend to worry a lot about different things. Your doctor should ask questions about your mood to see how you are doing.

It is important to be honest with your doctor about your symptoms. In some cases, the doctor may recommend further evaluation for depression and anxiety as it is important to explore all possibilities to try to improve your overall well-being.

Many patients improve. It is important to note that some patients, evaluated several years later, no longer experience enough symptoms to meet the criteria for fibromyalgia. However, this is a condition that seems to come and go throughout life.

We feel that people with JPFS will need to pay careful attention to sleep, exercise, and stress levels in order to decrease symptoms of fibromyalgia. With careful attention to a healthy lifestyle, people with JPFS can live very happy and healthy lives. The quality of life can be excellent, and people with JPFS often have successful personal and professional lives.

Many patients with JPFS may also be diagnosed with CFS. Symptoms are very similar, but patients with JPFS generally experience more pain. Treatment for JPFS should improve the fatigue seen in both conditions.


Last Updated 08/2013