What is Juvenile Primary Fibromyalgia (JFM)?
Juvenile primary fibromyalgia (JFM) is a condition that causes children and teenagers to experience musculoskeletal pain “all over” and fatigue. We don’t know what causes JPM. JFM is also called chronic widespread pain or pain amplification.
Patients with JFM are sometimes cared for by a doctor called a rheumatologist because the symptoms are 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.
Incidence of JFM
JFM usually happens in the teenage years. Females are more likely than males to be diagnosed with JFM. Many patients (up to 75 percent) will have a family member with a diagnosis of fibromyalgia.
Long-Term Outlook for Children with JFM
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, while others do. However, this is a condition that seems to come and go throughout life.
We feel that people with JFM will need to pay careful attention to sleep, exercise, and stress levels in order to decrease symptoms of fibromyalgia. With careful attention to a balanced lifestyle, people with JFM can live very happy and healthy lives. The quality of life can be excellent, and people with JFM often have successful personal and professional lives.
JFM and Chronic Fatigue Syndrome
Many patients with JFM may also be diagnosed with chronic fatigue syndrome. Symptoms are very similar, but patients with JFM generally experience more pain. Treatment for JFM should improve the fatigue seen in both conditions.
Signs and Symptoms of JFM
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.
Tender Points
While the physical exam is normal in patients with JFM, many are likely to feel pain when pressure is applied to specific places on the body called "tender points." These places may stay tender when pressure is applied even after many of the other symptoms of JFM have improved.
Causes of JFM
We do not know the exact cause of JFM. We do know that often fibromyalgia occurs in families, but 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 cause JFM.
What we see in JFM patients is that most are caught in a cycle of pain, fatigue, poor sleep and decreased exercise. Each of these symptoms (pain, fatigue, poor sleep, little to no exercise) affects 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.
This cycle can be very hard to break and it can also affect mood and emotional health.
Triggers for JFM
Often the cycle is triggered by something, like an Injury, pain, illness or stress. Other triggers include relationships issues at home and at school, schoolwork or studies, or a death in the family. Some patients have no reason for a flare up.
Sleep Abnormalities and JFM
The main sleep problem in JFM 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 in 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.
Treatments for JFM
Proven treatments for JFM are education about the disease and cognitive behavioral therapy (CBT). CBT is a program that helps children learn to decrease their experience of pain. They help 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.
Some medicines that are proven to work in adults with fibromyalgia have been used with some success in children. Most medicines have not been studied in children.
Medicines 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 medicines mostly work by changing chemical signaling by the nerves.
Clinical drug trials are underway to test the use of these drugs in JFM. 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.
Exercise is an important part of treatment in JFM 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 may be less effective.
JFM and Pain While Exercising
It is common that exercise will lead to increased pain especially early on in the treatment of JFM. Some of this pain is from your muscles being sore and 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 JFM.
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.
JFM, Depression and Anxiety
Some symptoms, such as fatigue and disturbed sleep, are very similar to symptoms experienced by patients with depression. Most patients with JFM do not meet criteria for major depression, but some do. Some patients are 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.
Long-Term Outlook for Children with JFM
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, while others do. However, this is a condition that seems to come and go throughout life. People with JFM will need to pay careful attention to sleep, exercise, and stress levels in order to decrease symptoms of fibromyalgia.
With careful attention to a balanced lifestyle, people with JFM can live very happy and healthy lives. The quality of life can be excellent and people with JFM often have successful personal and professional lives.
JFM and Chronic Fatigue Syndrome
Many patients with JFM may also be diagnosed with chronic fatigue syndrome. Symptoms are very similar, but patients with JFM experience more pain. Treatment for JFM should improve the fatigue seen in both conditions.
