Juvenile Primary Fibromyalgia Syndrome (JPFS) causes a person to experience musculoskeletal pain “all over” and fatigue as their main symptoms.
JPFS is a condition that has no known cause. Often fibromyalgia occurs in families, but so far, a genetic cause for JPFS has not been found. Abnormalities of neurotransmitters (chemicals that send pain signals to the brain) and some hormones have been found in patients with JPFS, but it is not known if these abnormalities actually cause JPFS.
JPFS usually happens in the teenage years. Females are more likely than males to be diagnosed with JPFS. Many patients (up to 75%) 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
- Abdominal pain
- Irritable bowel symptoms
- Anxiety or tension
- Tight muscles
- Brief periods of swelling
Less common symptoms include:
- Difficulty 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.
JPFS patients are stuck in a ‘vicious cycle’ of pain, fatigue, poor sleep and decreased exercise. Often the cycle is triggered by something, like an Injury, illness and/or stress. Relationships at home and at school, school work/studies, a death in the family, are just some possible stressful triggers. Also, anything that causes pain or causes someone to stop their normal pattern of exercise can also trigger JPFS.
Many patients with JPFS may also be diagnosed with Chronic Fatigue Syndrome (CFS). Symptoms are very similar, but patients with JPFS generally experience more pain. Treatment for JPFS should improve the fatigue seen in both conditions.
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 are frequently used with success in children, but clinical trials to study the effect of these medicines in children with JPFS are only just beginning.
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, elliptical trainer, rowing or the stair stepper. Some sports like basketball, soccer, and track provide enough aerobic exercise. Other sports such as baseball, softball and volleyball are not as effective.
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 thirty 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’.
Clinical drug trials are underway to test the use of adult fibromyalgia drugs in JPFS. Some of these drugs are also used to treat depression and anxiety. Non-steroidal anti-inflammatory medications (ibuprofen, Advil, Motrin, Aleve, etc) have not been proven effective in the long-term treatment of fibromyalgia but may provide temporary pain relief.
Some patients with JPFS improve to the point that when evaluated several years later, they no longer experience enough symptoms to meet the criteria for fibromyalgia. With careful attention to a healthy lifestyle, people with JPFS can live very happy and healthy lives.