Published onChildren's Doctor
Juvenile fibromyalgia (FM) syndrome is a painful, debilitating type of amplified musculoskeletal pain syndrome that results in nearly total body pain, fatigue, and dizziness, among several other possible symptoms. Children and adolescents with this condition have significant pain and disability that impacts their everyday lives—including making it hard to spend time with friends, play sports, or attend school.
The Center for Amplified Musculoskeletal Pain Syndrome (AMPS) at Children’s Hospital of Philadelphia (CHOP) is dedicated to the interdisciplinary, nonpharmacologic management of amplified pain and has a team of psychologists, occupational therapists, physical therapists, nurses, physicians, creative arts therapists, and a social worker to treat this pain condition.
A frequent complaint that patients with FM report is issues with how their brain is working, referred to as “brain fog” (also known as dyscognition). This may mean problems concentrating, paying attention, multitasking, etc. There is some data from adults with FM showing conflicting evidence as to whether these self-reported (subjective) symptoms are indicative of an actual underlying brain problem.
Research to Find Key Answers
The AMPS research team, led by Sabrina Gmuca, MD, MSCE, decided to specifically research:
- How many young children and adolescents with FM report issues with dyscognition
- What factors make kids with FM more likely to have dyscognition
- Whether self-reported (subjective) dyscognition is associated with abnormal findings on testing of memory and brain function
With funding from CHOP’s Junior Investigator Pilot Grant Program and in partnership with the Center for Human Phenomics science, the research team conducted a cross-sectional cohort study (recently published in Frontiers in Pediatrics) of teens ages 12 to 17 who had been and diagnosed with FM from the Center for AMPS. Patients who had a neurologic or cognitive disorder or were prescribed a stimulant medication were not able to participate in this study. Patients completed a few survey measures and underwent a brief neurocognitive battery (series of tests assessing how well they can think, pay attention, and remember and organize information).
A total of 31 patients participated in the study. Overall, study participants were female (87%) and non-Hispanic White (81%). Pain intensity was moderate with an average pain score of 59 (possible range 0 to 100) among subjects. Depression (45%) and anxiety (65%) were common. Nearly three-fourths of subjects reported having problems with dyscognition, and patients with physical impairment and anxiety were more likely to have dyscognition. From the results of a battery of cognitive tests, a little over one-third of subjects had an abnormal finding, most often related to attention, how fast they can think, and higher-level thinking.
Overall, these findings show that brain fog is a common symptom among youth with FM, and for a substantial number of patients this is indicative of an underlying cognitive problem. Increased access to cognitive testing is therefore important in the care of children with FM. The findings also highlight the critical role of Social Work in facilitating the school support needed for patients with FM to ensure their academic success.
Communication with Schools Critical
The study findings further solidify the critical role of social worker Terri Al’Hadi, MSW, within the Center for AMPS. Al’Hadi facilitates communication with schools to ensure patients have a school re-integration plan, as generally a lot of young people with AMPS will be out of school or miss school because of pain. The team’s goal is to get them back to school and build their confidence in their ability to do so. For children with AMPS in the intensive pain rehabilitation program, patients will participate in school re-integration days as part of their treatment.
To further support schools, occupational therapy students Miranda Powers and Hal Martin from Jefferson University (who also rotated at CHOP for part of their training) worked with Social Work and Psychology to develop formal educational materials for school staff, including nursing. After spending time in the intensive AMPS program and questioning program participants individually, Powers and Martin were able to devise materials, including an online website, to help patients with amplified pain explain their diagnosis and school support needs to their teachers and peers.
School nurses play an important role in ensuring that kids with AMPS are not automatically sent home from school every time they have a pain complaint, but without the proper knowledge and training this can be quite challenging for schools to do confidently. The Center for AMPS plans to build on this advocacy work by making these resources available to everyone on the CHOP website. The team also seeks opportunities to meet school providers and provide additional guidance and support as needed.
Future research that would be helpful for better understanding the causes and treatment for dyscognition in FM include looking at how dyscognition may change after participation in an intensive pain rehabilitation program. The AMPS team finds that through treatment, and improved sleep, patients’ “brain fog” also improves. It would be helpful as well to see if with any imaging studies (like functional MRIs) of the brain we can further understand the changes that happen in the brain that affect things like memory, and attention and thinking. Additionally, patients with systemic lupus erythematosus have issues with dyscognition as well, so comparing the FM patient population to patients with lupus may also help us better understand the potential underlying inflammatory causes for dyscognition.
References and Suggested Readings
Gmuca S, Sondgra M, Xiao R, et al. Characterizing neurocognitive impairment in juvenile fibromyalgia syndrome: subjective and 1objective measures of dyscognition. Front Pediatr. 2022;10:848009.
Categories: Children's Doctor Summer 2022