The Invisible Ache: Your Guide to Understanding Fibromyalgia in Teens

Fibromyalgia does not only occur in adults but also teenagers. This is known as juvenile fibromyalgia syndrome (JFMS). While the diagnosis may seem scary at the start, it's important to recognize that it is not life-threatening and there are various treatments and therapeutic approaches available. With the right management and care, teens with fibromyalgia can lead fulfilling lives.

In this article, we cut through the complexity to provide clear answers about symptoms, diagnosis, and treatment that can bring relief and understanding to both adolescents and their caregivers.

What is fibromyalgia in teens (JFMS)?

Frequently known as juvenile fibromyalgia, juvenile primary fibromyalgia syndrome (JFMS) is a condition characterized by persistent widespread pain. It primarily affects teenage girls, typically between the ages of 13 and 15 years old1. This syndrome can significantly disrupt daily activities and impede the emotional development of young individuals due to the accompanying musculoskeletal pain and fatigue.

What causes JFMS?

There is currently no exact known cause for juvenile fibromyalgia syndrome. It's believed to encompass genetic, physical, and psychological factors. Environmental factors, such as physical trauma or infections, as well as significant emotional stress, can also act as catalysts for the onset of the syndrome.

The current understanding of the cause is that dysfunctions in the central nervous system result in an abnormal increase in pain sensitivity and the way pain is processed by those affected. This heightened pain perception is also referred to as central sensitization. It's like the body's system for feeling pain is stuck on the "extremely sensitive" setting, so even a light touch can feel very strong and painful.

What are the symptoms of JFMS?

Chronic musculoskeletal pain and persistent fatigue are the hallmarks of JFMS, bearing similarities to adult fibromyalgia. Common symptoms include:

  • disrupted sleep
  • stiffness in the morning
  • frequent headaches
  • abdominal discomfort
  • dizziness
  • a sensation of light-headedness
  • tingling or numbness
  • difficulties in concentration, also known as "fibro fog."

Chronic pain & sensitivity

As mentioned previously, at the core of JFMS lies persistent pain and an increased sensitivity to touch. The nervous system becomes unusually reactive, making even mild physical contact uncomfortable.

The origin of this heightened sensitivity is in the alterations to pain receptors, neurotransmitters, and neural pathways2. These changes cause the nervous system to overreact, as if it's perpetually on guard, resulting in a lowered pain threshold and continuous discomfort, without any visible cause of injury.

Sleep disorders & fatigue

Teens grappling with JFMS often contend with sleep-related challenges and pervasive fatigue. Achieving restful sleep is a struggle for them, as they may find it hard to fall asleep or might wake up frequently during the night. Consequently, their sleep lacks the deep, restorative stages – specifically stage 4 – essential for feeling rejuvenated the next day.

It is not uncommon for these adolescents to experience increased limb movement during sleep, which can be a sign of restless legs syndrome3.

How is JFMS diagnosed?

Assessing a teenager for juvenile fibromyalgia syndrome can be perplexing due to the absence of specific tests such as blood work or imaging. Clinicians need to carefully review the teen's medical history and perform a detailed physical exam, focusing on widespread pain while excluding other potential illnesses.

Physicians adopt and adapt the criteria used for diagnosing adult fibromyalgia for use in younger patients. To confirm a fibromyalgia diagnosis, adolescents must meet all the major (primary) criteria and at least three minor (secondary) criteria listed below.

Major criteria

  • Persistent pain in multiple body regions for a duration of at least three months.
  • Presence of pain at five or more specific tender points associated with FMS.
  • No other medical condition explaining the symptoms.
  • Standard medical tests fail to show abnormalities related to other conditions.

Minor criteria

  • Recurrent feelings of anxiety or tension.
  • Persistent tiredness.
  • Difficulty sleeping.
  • Regular headaches.
  • Irritable bowel syndrome (IBS).
  • Perceived swelling of soft tissues.
  • Pain exacerbated by physical exertion.
  • Pain intensified by climatic changes.
  • Pain amplified by stress and anxiety.

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Prognosis & long-term management

While JFMS is a long-term condition, individual experiences can differ significantly. Some teens might find that their symptoms gradually lessen over time until they no longer meet the criteria for a JFMS diagnosis. Others may continue to deal with fluctuating or persistent symptoms as they transition into adulthood.

It's important to emphasize that with the right support and management strategies, adolescents with fibromyalgia can lead rewarding, full lives.

How to manage fibromyalgia symptoms in teens

In managing juvenile fibromyalgia syndrome, our primary aim is to help your child return to their usual daily activities, alleviate their pain, and improve their sleep. A successful treatment plan typically involves a multidisciplinary approach, which may encompass medications, behavioral therapies, and a personalized exercise regimen to address the symptoms effectively.

Medication & supplements

Medication plays a supportive role in the management of fibromyalgia symptoms. For pain relief, doctors often recommend common pain relievers, such as acetaminophen or ibuprofen. In certain cases, prescription medications may be necessary, such as:

  • amitriptyline
  • cyclobenzaprine
  • fluoxetine
  • venlafaxine.

These medications are not cures, but they can be effective in helping to manage the condition.

Physical therapy & exercise

Physical activity is a cornerstone in the management of juvenile fibromyalgia syndrome. Research with adults who suffer from fibromyalgia reveals that aerobic exercise plays a key role in treatment4. A physical therapist can design a program that enhances muscle flexibility, supports heart health, and improves overall function.

Engaging in regular exercise not only manages symptoms but also helps to mitigate abrupt increases in pain. While starting an exercise routine may initially cause some muscle soreness and a slight increase in discomfort, activities such as swimming and yoga can be particularly beneficial in reducing pain and enhancing emotional wellbeing.

Retraining the pain response

Understanding and retraining the brain's perception of pain is a sophisticated yet essential process. It requires identifying the root contributors to pain, such as stress or habitual thought patterns. Recognizing these elements allows us to leverage the brain's ability to rewire itself, known as neuroplasticity, and ultimately help your child to learn to reduce their triggers. Consistently applying these methods is key to altering the neural pathways that interpret pain signals.

Managing stress

There are a variety of effective stress management techniques that can be beneficial. Cognitive behavioral therapy (CBT) is a structured approach that helps someone reshape unhelpful thinking patterns.

Mindfulness practices can also be useful to focus on the present moment, which can promote a sense of calm. If your teen can share their experiences with friends, therapists, or support groups they can gain emotional support and a sense of community.

Sleep quality

Ensuring restorative sleep is crucial in managing fibromyalgia. Those with the condition often experience sleep challenges that affect their overall wellbeing. To improve sleep quality, consider the following guidance:

  • Prioritize sleep: Aim for a consistent sleep routine with adequate hours each night.
  • Limit naps: Short naps can be refreshing, but long ones may disrupt the night's sleep.
  • Maintain physical activity: Exercise can promote a more restful sleep.
  • Evening routine: Establish a pre-sleep ritual without electronic devices to help relaxation.
  • Optimize the sleep environment: Ensure the bedroom is conducive to sleep – dark, quiet, and cool.
  • Watch caffeine intake: Avoid caffeine close to bedtime.
  • Be mindful of eating and drinking: Steer clear of large meals and alcohol before sleep.
  • Relaxation practices: Engage in calming activities such as meditation or reading before bed to foster better sleep and manage fibromyalgia symptoms more effectively.

How to support your child through JFMS

As your child's primary advocate in managing juvenile fibromyalgia syndrome, your involvement is of the utmost importance. Here are some ways you can provide support:

  • Educational support: It's beneficial to learn about JFMS to fully comprehend the challenges your child faces. Seek out support groups and resources for families and healthcare providers.
  • Emotional guidance: Offer consistent emotional guidance. Be their pillar, ensuring they feel understood and supported in social situations.
  • Specialized adolescent programs: Look for programs tailored to teenagers that provide mentorship and health education. These can also assist with educational advocacy, which is important to prevent social isolation associated with JFMS.
  • Building community connections: You are not navigating this alone. There are online communities for individuals with JFMS that can provide a network of support and valuable information.

More information

At MoreGoodDays®, our commitment is to guide you and your child with expertise through the complexities of fibromyalgia. We understand the significant impact this condition has on families, and we strive to provide resources that are both practical and beneficial. Our content is thoughtfully designed to offer you clarity and insight into managing fibromyalgia, as well as strategies to effectively manage pain and reduce fatigue.

Our dedication is to support your child's journey toward wellness and quality of life, despite the challenges of fibromyalgia, and support you as they navigate this path.

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