No parent ever wants to see their child in pain, but families of children with juvenile fibromyalgia suffer every day.
Juvenile fibromyalgia is a chronic pain condition with no known cause. One estimate cites six in 100 children are living with this syndrome in the United States, though studies are hard to come by.
The Cincinnati Children's Hospital, which houses a pediatric pain program, states approximately 75 percent of those diagnosed with juvenile fibromyalgia have a family member with the disorder and the majority of children suffering are female.
Diagnosis often comes after rounds of laboratory tests and physical examinations to rule out other disorders or diseases. Criteria for a diagnosis include widespread musculoskeletal pain in all four quadrants of the body, 11 of 18 tender points throughout the body, and chronic pain that has lasted three months or more. Symptoms may also include general fatigue, headaches, tingling or numbness in the hands or feet, sleep disturbance, irritable bowel syndrome (IBS), and difficulty with memory or thought processing. Symptoms sometimes present themselves after an injury, a period of stress, or other illness.
Though it tends to occur in families, there is no documented genetic cause. Some abnormal displays of neurotransmitters and hormones have been seen in patients, but no consistent or definitive pattern has been established. In the scientific world of medicine where highly-structured studies and resulting data are heralded, juvenile fibromyalgia has been met with some skepticism because of the lack of concrete evidence of its cause and no specific medical test to account for its existence.
However, for those who suffer, they know the pain is real.
For children, this takes its toll on everyday life, including participation in school, sports, and hobbies. Chronic pain and disturbances in sleep may cause children to miss school and to have difficulty concentrating on days they are able to make it to class. Depression and anxiety are common among those children living with the disabling symptoms.
Treatment for this complex disorder often involves a number of professionals. A rheumatologist is typically a lead member of the treatment team to deal with issues of joint pain and may prescribe medication to reduce physical pain symptoms. A physical therapist will target physical challenges as well, working with the patient to stretch and build strength. A psychologist is often a key member of the team, working with the patient to incorporate cognitive behavior strategies, including stress-management techniques and calming tactics. Many parents cite the importance of counseling for their children with the disorder and for family members involved in caring for them.
Though doctors may suggest medication to reduce symptoms, most also recommend exercise such as walking, biking, and water-based activities to help build strength and ease pain. New strategies for relief include yoga, Tai Chi, and acupuncture.
The multiple health benefits of yoga for all participants have been well-documented and the success of this gentle form of exercise has been embraced by the fibromyalgia community. A study published in 2010 in the journal Pain highlights the effects of a weekly two-hour yoga class for people with the disorder, in which more than half the patients reported a significant decrease in pain, fatigue and stiffness after completing the regimen.
A 2012 study published in the New England Journal of Medicine touts Tai Chi as a possible support for people with the disorder, saying individuals who practiced twice a week for twelve weeks reported improvements in their conditions and their overall quality of life. No adverse affects on individuals who participated in the practice were reported.
Acupuncture, the eastern alternative medicine practice, is used to treat a variety of symptoms and disorders as it continues to gain popularity here in the U.S. In this practice, pain is seen as a disruption of one's energy and is treated by placing needles at specific points within the body to reestablish a healthy flow. The practitioner selects the location of the needles based on the patient's specific complaints, so those with juvenile fibromyalgia receive customized treatment based on their current condition.
Because a formal diagnosis for fibromyalgia did not exist until 1990, awareness of the disorder is limited and treatment centers are hard to come by. For those struggling with juvenile fibromyalgia and the families who love and care for them, the disorder can be exhausting. Rounds of tests, series of doctors visits, and seemingly endless hours researching and incorporating treatments take their toll on the well-being of the family.
Patients often try a number of strategies in tandem to find relief. When a child is suffering; however, a parent will not rest until an answer produces peace so the thousands of families living with juvenile fibromyalgia keep on looking for solutions to quell the pain.
Jennifer is an educational consultant who works with families and educators to establish healthy and productive routines in the home and school. Adapting behavior management techniques she implemented for years as a special educator, she helps parents and teachers adopt these tools to fit their unique needs and priorities. Jennifer also speaks to parent and education groups on current topics in education and children's health. Visit www.jennifercerbasi.com