Childhood Fibromyalgia: A Complex Interaction of Physical, Emotional, Social, and Environmental Influences
Juvenile fibromyalgia syndrome (FMS) is a chronic pain condition found in approximately 2 percent to 7 percent of children, mostly adolescent females. It is similar to adult fibromyalgia in that it consists of musculoskeletal pain throughout the body, insomnia, fatigue, and mood problems. The core feature of fibromyalgia is general musculoskeletal pain evidenced by multiple Tender Points (TP).
Other features of the disorder include exhaustion with or without sleep difficulties, joint stiffness, skin tenderness, and poor memory, among others. Long-term musculoskeletal pain negatively impacts the child’s quality of life and fatigability is associated with decreased motor responses and inability to carry out one or more daily living skills (Kashikar-Zuck, & Ting, 2014).
While the condition looks similar to the adult version of the disorder, juveniles with fibromyalgia exhibit greater impairment in functioning across the spectrum than adults and continue to experience problems and functional disability into early adulthood. The chronic characteristics and symptoms of fibromyalgia in children indicates potential negative outcomes related to psychosocial development.
Chronicity of features also suggests that children with the disorder have a harder time coping with the transition from childhood to adulthood. While studies have contributed to greater understanding of adult fibromyalgia, few studies have been conducted examining the corresponding condition in childhood, largely because until recently it was not believed to occur in that age range.
Symptoms and Co-morbid Conditions
Juvenile fibromyalgia is believed to be a common, widespread, painful, multifaceted condition, which is diagnosed based on the summation of pain, chronic exhaustion and low body temperature among other autonomic symptoms. Symptoms include:
- Allodynia or severe pain in response to light touch
- Pain without known cause
- Myalgia or pain in individual muscles or groups of muscles
- Arthralgia or pain in the joints or skeletal system
- Chronic headaches or migraines
- Chronic fatigue despite excessive sleep
- Difficulty falling asleep or staying asleep
- Low body temperature
- Cognitive dysfunction including memory, attention and concentration difficulties and word-find problems
- Dyshidrosis or small fluid filled blisters on the palms of the hands
- Peripheral cryesthesia or extreme sensitivity to cold
- Cyanosis or abnormal bluish coloration of the nails and lips due to desaturation of blood
- Peripheral edema or swelling in the lower limbs
Several disorders co-occur in children with fibromyalgia. These include eating disorders such as anorexia and hyperphagia or abnormally increased appetite and consumption of food, irritable bowel syndrome and chronic migraines. Mood disorders such as depression and anxiety also tend to co-occur with juvenile fibromyalgia and can make the pain worse. Dysautonomias, which occur primarily in adolescent females with fibromyalgia, can also be a problem. These disorders involve symptoms such as lightheadedness, fainting, unstable blood pressure, and an abnormal heart rate.
Other associated symptoms include social isolation due to withdrawal as the result of feeling ill, not being able to join in activities with their peers or fear of being rejected or ridiculed. Over 80 percent of these children experience ‘school rejection syndrome’ (i.e. school non-attendance). On average children with fibromyalgia miss 3 days of school a month and many do are home schooled as they can’t attend school at all (Kashikar-Zuck, & Ting 2014).
Social isolation, depression, intense pain, and hopelessness regarding lessening of the pain in the future can lead children to engage in self injurious behavior. In these cases the experience of pain, which is amplified by mood and social factors, is so severe sometimes an injury such as bruising or cutting sometimes provides a form of relief. It is of note that children may experience the pain from fibromylgia as so completely intolerable that they purposely cause themselves to suffer a different type of pain to gain relief.
While the subjective experience of the pain is the direct trigger of such behavior, self-injury is also another indication of the psychological distress the child is feeling. Chronic pain in adolescents has also been shown to be associated with suicidal thoughts and behavior. While depression increases the strength of this relationship, there is an independent direct effect between pain and suicidal ideation when depression is controlled for (van Tilburg, Spence, Whitehead, Bangdiwala & Goldston, 2011).
Given the disagreement on the criteria for the diagnosis of juvenile fibromyalgia and the likelihood that it is grossly under-reported statistics related to the disorder vary. Prevalence rates between 1.2 percent and 6.2 percent of children between the ages of 9 and 15 have been reported. It is believed that fibromyalgia rates in children are higher than in adults. The distribution of age of onset and average age of children and adolescents with fibromyalgia is also unclear and reports vary. Some research indicates that age of onset is under 10 years in a significant percentage of children. Mean age of illness onset has been estimated at 13.7 years while the mean age of diagnosis has been reported at 15.5 years of age (Buskila, & Ablin, 2012). Juvenile fibromyalgia continues into adulthood in 80 percent to 90 percent of affected children.
Similar to adults, fibromyalgia is significantly more likely to affect girls than boys, with studies reporting female subjects accounting for as much as 91 percent of the population of participants. It is possible that some of this difference may be due to differences in group characteristics. Girls are more likely to internalize pain and distress, becoming withdrawn, exhibiting depressed mood and failing to participate in once enjoyable activities, features that are likely to draw adults’ attention. Boys, on the other hand, are more likely to exhibit externalizing behavior problems when distressed or not feeling well. They may become irritable, oppositional and moody, characteristics that are often not recognized as masking pain.
Do you have a child with juvenile fibromyalgia? What has been your approach to helping them?
Juvenile fibromyalgia (and fibromyalgia in general) is considered to be a physiologic disorder as opposed to a psychiatric condition. Woolf (2011), indicated there that these exists a class of disorders he termed “central sensitivity syndromes (CSSs)”, which are the result of alterations in the central nervous system (CNS). Neurochemical findings show that in fibromyalgia and other disorders believed to be related to the changes in the CNS lead to various areas of the body becoming excessively sensitized to touch, so that pain results from even light contact or pressure. The disorders suggested to be central sensitivity syndromes include:
- Irritable bowel syndrome
- Chronic Fatigue Syndrome
- Post-Traumatic Stress Disorder (PTSD)
- T-T headache (tension type)
- Myofascial pain syndrome
- Female urethral syndrome/interstitial cystitis
- Multiple chemical sensitivity syndrome
- Restless leg syndrome
- Periodic limb movements in sleep (PLMS)
- Primary dysmenorrhea
- Temporomandibular Muscle Disorders (TMJ) which can lead to degenerative arthritic inflammation in the temporomandibular joint
These 13 disorders have many of the same features and share the pathophysiologic factor of central sensitization (CS). Yunus (2011), asserts that the pain experienced by individuals with one of these disorders is not just psychiatric, psychosocial, or psychological. While problems in these areas (e.g. depression, stress, social isolation) can contribute to symptoms, diagnosis is dependent on changes in the CNS.
The causes of juvenile fibromyalgia have not been fully determined so understanding of the disorder is limited. There is evidence of a genetic underpinning to the disorder and many of the causative links are believed to operate through a genetic predisposition. As many as 90 percent of parents of children with fibromyalgia have a history of significant pain and report at least on chronic pain condition. Up to 75 percent of children with fibromyalgia have a first degree relative with the same disorder. Additionally, experts theorize that repeated nerve stimulation causes the brains of some individuals to become altered. This alteration involves an abnormal increase in levels of neurotransmitters, chemicals in the brain that communicate pain responses. It is believed that the pain receptor’s in the brain develop a special type of memory for pain and become more sensitized over time, leading them to overreact to pain signals resulting in increased pain sensations. Genetic markers have been identified indicating an increase in the neurotransmitters norepinephrine and serotonin along with their transport and receptor sensitivity. These responses have been associated with triggering pain responses in children with Fibromyalgia.
While genetics may be an important factor in juvenile fibromyalgia, the increased prevalence in first degree relatives of children with this disorder may be in part accounted for by parental chronic pain and modeling of coping behavior related to pain. Parents who were more likely to obtain treatment for their chronic pain and to report their pain prevented them from engaging in recreational activities had children with higher pain ratings and worse health status compared to peers whose parents did not experience chronic pain. This relationship was influenced by child catastrophizing (Schanberg, et al., 2001). Thus, the fact fibromyalgia appears to run in families is likely an interaction of both nature and nurture.
The other major etiological factors identified in this disorder are trauma, stress and inadequate coping ability. Research suggests that stress can act as a triggers for the later development of fibromyalgia later in childhood and adolescent. Stressors and traumatic events that have been linked to Juvenile Fibromyalgia have included being raised in a single parent family, history of sexual abuse, poor emotional relationship between parents and the child, the absence of physical affection, observing parental violence against each other, maternal drug addiction, separation from parents, and household financial problems prior the child turning 8 years old. In adolescents in addition to these triggers, problematic peer relationships and inadequate social support have been identified as links (Buskila, & Ablin, 2012).
While perhaps not causal there are often triggers to condition onset, exacerbation and flare-ups. In addition to traumatic situations, sometimes symptoms are triggered by a severe injury, illness or stress. Poor home and school relationships, problems at school or work, a death in the family, are just a few of the potential stressors that can act as triggers. Anything that causes the child pain or leads to them stopping their normal pattern of exercise can also trigger the disorder. It is important to understand that there is likely an interaction between the experience of pain and the cessation of exercise with the factors that cause either to occur. Simply making the pain stop or getting the child to increase their exercise may miss underlying factors important in the genesis of fibromyalgia symptoms. At times, children may have no identifiable reason for condition onset or flare-up.
Juvenile fibromyalgia is a condition in which children and adolescents complain of acute and chronic severe pain, for which no primary cause can be determined. Youth with the condition predominantly complain of systemic pain and allodynia or pain from light touch, minimal pressure, or even clothing against the skin. Yet it is important to think of the disorder as the sum of painful illness symptoms, chronic and continuous fatigue, hypothermia or extreme low body temperature, in addition to a number of other autonomic symptoms and signs.
These physiological features do not occur alone, however. They interact and transact with a number of other characteristics including individual parent and child traits (personality, temperament, sensitivity, memory of pain; learning in regards to pain experiences; gender; age; parent and child individual states [self-esteem, depression, anxiety, developmental level], and external stressors [parent-child relationships, teacher-child relationships, peer and social relationships]).
Juvenile fibromyalgia is an extremely complex disorder as while there are definite physiological causes and contributions to onset, severity, longevity and flare-up, practically everything the child comes into contact with and experiences has the potential for leading to a flare-up or worsened symptoms. The contribution of parental illness, coping, and treatment preferences also have a strong impact on the child’s experience of pain, how the child perceives it, and what they do to modify or tolerate it.
With all these factors working together, one of the main methods of helping the child is to ensure that they have exceptional coping strategies. This means specific strategies for the pain, fatigue, and other symptoms of the disorder and general strategies for handling the variety of life stress they experience. Coping strategies should go beyond mere tolerance of distress; they should help decrease not only the actual pain and stress present but also alter how pain and stress are perceived.
Buskila, D., & Ablin, J. (2012). Pediatric fibromyalgia. Reumatismo, 64(4), 230-237.
Kashikar-Zuck, S., & Ting, T. V. (2014). Juvenile fibromyalgia: current status of research and future developments. Nature Reviews Rheumatology, 10(2), 89-96.
Schanberg, L. E. et al. (2001). Family pain history predicts child health status in children with chronic rheumatic disease. Pediatrics 108, E47.
van Tilburg, M. A., Spence, N. J., Whitehead, W. E., Bangdiwala, S., & Goldston, D. B. (2011). Chronic pain in adolescents is associated with suicidal thoughts and behaviors. The Journal of Pain, 12(10), 1032-1039.
Woolf, C. Central sensitization: implications for the diagnosis and treatment of pain. Pain 152, S2–S15 (2011).
Yunus, M. B. (2011). The prevalence of fibromyalgia in other chronic pain conditions. Pain research and treatment, 2012.
Questions & Answers
Is fibromyalgia related to childhood trauma?
Traumatic experiences and stressors in childhood have not been fully considered as predisposing factors for a number of chronic pain disorders including fibromyalgia. However, this is changing as new research is demonstrating a significant relationships between trauma in childhood and adult health.The central nervous system develops rapidly during childhood and as it does, it is trained to react to different kinds of stressors that are encountered in life.
As each environmental stressor is encountered, new connections are formed between the cells of the brain. A traumatic experience creates and reinforces connections that respond to trauma with fear. As we get older the ability to form new pathways and to alter the brain’s response to different stressors decreases.
This means children form more neural pathways that determine how they respond to various experiences and the ability to alter these and replace them with new connections when they are stress responses decreases over time. This underscores the importance of exposing children to positive experiences and helping them learn ways to work through trauma and respond to it with adaptive coping strategies.
However, when negative pathways form in response to traumatic situations which aren’t altered and which become long-term, they increase the frequency and duration of the stress response to trauma-related stimuli. Since trauma these stimuli can be anything the child sensed when the trauma was occurring, the stress response can be unpredictable which makes it all the harder to try to control or cope with. Research has shown that unpredictable, uncontrollable stress can lead to a decreased ability to form new neural connections further decreasing the brain’s ability to create positive pathways. Uncontrollable and unpredictable stress also is related to a number of physical and psychological disorders including anxiety, insomnia, muscle pain, inflammation, high blood pressure and an impaired immune system.
While trauma is often referred to as an acute stressor, the experience of trauma can continue to cause stress in a child’s life through the symptoms of a stress response such as nightmares, memories, and re-experiencing the trauma when triggered by associated stimuli. So responses to trauma, when not treated will create a chronic stress response which can lead to changes in various hormones and neurotransmitters, including several associated with fatigue and pain. Chronic pain, fatigue and low energy can in term lead to increased psychological stress and psychological disorders which increase the level of stress experienced. While the exact causal pathways have not been determined, an impaired immune system, and changes in certain hormones and neurotransmitters have been associated with the various symptoms that are found in fibromyalgia.
Trauma, even acute trauma often results in chronic symptoms that lead to chronic stress. Chronic stress, especially when it is uncontrollable and unpredictable, can decrease the ability to form new positive neural pathways and alter hormones and neurotransmitters.
This means that the pathways associated with the stress response are harder to alter. When combined with changes in brain chemistry, the effects of an impaired immune system and chronic inflammation symptoms associated with fibromyalgia may result. The symptoms of fibromyalgia can, in turn, further increase stress which, along with the stress from the other factors, help to maintain the symptoms. Other difficulties such as anxiety and insomnia that may also result, simply add even more stress to the pictures. As children are less likely to have adequate coping responses for stress than adults, without help it is unlikely that they will be able to use various psychosocial techniques that might prevent the development of the disorder and have proven effective at decreasing it's symptoms if it does develop.