Living with fibromyalgia

Fibromyalgia is a long-term, chronic condition that affects millions of people worldwide. It is characterised by widespread musculoskeletal pain, fatigue, sleep disturbances, and cognitive impairments, among other symptoms.

While it is becoming more well-known, fibromyalgia remains an often misunderstood and misdiagnosed condition.

For those living with fibromyalgia, the condition can impact every aspect of life, from daily routines and personal relationships to employment and overall wellbeing.

We are going to discuss the complex nature of fibromyalgia—its causes, risk factors, impacts on life and work, and societal stigma.

What is fibromyalgia?

Fibromyalgia is a chronic disorder that amplifies pain signals in the brain and spinal cord, leading to widespread pain and heightened sensitivity to touch.

The word ‘fibromyalgia’ is derived from Latin and Greek roots, meaning ‘pain in the muscles and soft tissues’.

Despite its prevalence, fibromyalgia is often called an ‘invisible illness’ because its symptoms are not outwardly apparent, making it difficult for others to understand its debilitating effects.

What are the key characteristics of fibromyalgia?

• Widespread pain: Unlike localised pain, fibromyalgia causes pain throughout the body, which can vary in intensity and location from day to day.
• Fatigue: A deep, unrelenting exhaustion that is not relieved by rest or sleep.
• Cognitive difficulties: Often referred to as ‘fibro fog’, this includes memory problems, difficulty concentrating, and reduced mental clarity.
• Heightened sensitivity: Many people with fibromyalgia experience an increased sensitivity to pain, as well as to stimuli like light, sound, and temperature.
• Sleep disturbances: Despite feeling exhausted, individuals may struggle with falling or staying asleep, leading to non-restorative rest.

Common symptoms of fibromyalgia

Fibromyalgia is a condition characterised by a wide range of symptoms that can vary significantly from person to person.

While chronic, widespread pain is its hallmark, individuals often experience an array of additional physical, cognitive, and emotional symptoms that collectively impact their quality of life.

Understanding these common symptoms is crucial for identifying the condition and managing its effects effectively.

Fibromyalgia can manifest as:

• Chronic headaches or migraines
• Irritable bowel syndrome (IBS)
• Tingling or numbness in hands and feet
• Mood disorders such as depression or anxiety
• Temporomandibular joint (TMJ) disorders
• Stiffness, particularly upon waking or after prolonged sitting

What causes fibromyalgia?

The exact cause of fibromyalgia remains unknown, but research suggests it arises from a complex interplay of genetic, neurological, and environmental factors.

Genetic predisposition appears to play a role, as the condition often runs in families, with specific gene variations linked to pain perception and neurotransmitter function.

Neurologically, fibromyalgia is associated with an overactive pain-processing system in the central nervous system, a phenomenon known as central sensitisation, which amplifies pain signals and increases sensitivity to stimuli.

Environmental factors, including stress and trauma, are also significant contributors.

Fibromyalgia can develop following physical injuries, surgeries, or severe infections, where the body’s stress response may trigger lasting changes in the way pain is processed.

Psychological stress, such as the experience of grief, abuse, or prolonged anxiety, is another potential catalyst, as it can disrupt the brain’s ability to regulate pain and stress hormones effectively.

For some people, fibromyalgia emerges without a clear triggering event, gradually manifesting over time as a result of cumulative factors that affect the nervous system.

The various potential causes of fibromyalgia highlight its complexity and can bring challenges regarding diagnosing and treating the condition effectively.

Link to the brain and pain pathways

Fibromyalgia is directly linked to how the brain and nervous system perceive and regulate pain, leading to a heightened and often debilitating experience of discomfort.

At its core, the condition involves disruptions in the central nervous system's processing of pain signals.

Normally, the body uses a delicate balance of neurotransmitters—chemical messengers in the brain—to regulate pain perception, ensuring that responses to injury or discomfort are proportional to the stimulus.

However, in fibromyalgia, this system becomes overactive, amplifying even minor sensory inputs into significant pain. This dysfunction is referred to as ‘central sensitisation’, a phenomenon in which the brain and spinal cord develop an exaggerated response to pain signals.

Central sensitisation causes the nervous system to remain in a state of heightened alertness, increasing sensitivity not only to pain but also to other stimuli, such as touch, light, sound, and temperature.

This explains why people with fibromyalgia often report discomfort from sensations that would typically be perceived as neutral or mild by others.

Additionally, altered levels of neurotransmitters such as serotonin, dopamine, and norepinephrine—which play critical roles in mood and pain regulation—may contribute to this heightened pain perception and the associated symptoms of fatigue, cognitive difficulties, and emotional distress.

Fibromyalgia is self-reinforcing; chronic pain leads to changes in neural pathways over time, making the nervous system even more hypersensitive. This explains why fibromyalgia symptoms often persist or worsen despite the absence of an active injury or inflammation, and can flare up at any time.

The interplay between the brain's pain-processing centres and the rest of the body illustrates the complexity of fibromyalgia, highlighting the need for treatments that address not just physical symptoms but also neurological and emotional factors contributing to the condition.

Who is at risk for fibromyalgia?

Certain factors can increase the likelihood of developing fibromyalgia, although it can affect anyone regardless of age, gender, or background.

Genetic predisposition

Research indicates that fibromyalgia may run in families. Specific genetic markers linked to neurotransmitter function have been identified, suggesting a hereditary component.

Gender

Women are disproportionately affected by fibromyalgia, with between 75-90% of cases occurring in females.

While the mechanisms behind gender differences in fibromyalgia remain unclear, they are likely influenced by a combination of biological, psychological, and sociocultural factors.

Coexisting conditions

People with autoimmune diseases such as rheumatoid arthritis, lupus, or ankylosing spondylitis are at a higher risk of developing fibromyalgia.

Lifestyle and environmental factors

Chronic stress, poor sleep hygiene, lack of exercise, and exposure to traumatic events can increase susceptibility to fibromyalgia.

What are the impacts of fibromyalgia?

Fibromyalgia’s symptoms go beyond physical pain, affecting emotional wellbeing, relationships, and overall quality of life.

For many, the condition becomes a defining aspect of their daily existence.

Physical limitations

Living with chronic pain and fatigue often restricts mobility and the ability to engage in physical activities.

Simple tasks like grocery shopping, cleaning, or climbing stairs can become monumental challenges.

Overexertion can lead to symptom flare-ups, forcing individuals to plan their days carefully and conserve energy.

Emotional toll

The unpredictable nature of fibromyalgia can lead to feelings of frustration, hopelessness, and isolation.

Depression and anxiety are common among those with the condition, partly due to its impact on life plans and partly as a direct symptom of the disorder.

Strain on relationships

Friends and family may struggle to understand the invisible and fluctuating symptoms of fibromyalgia.

Miscommunication or lack of empathy can strain relationships, leaving individuals feeling unsupported.

Fibromyalgia and stigma

Despite increasing awareness, fibromyalgia continues to face significant stigma.

Because it lacks clear biomarkers and presents no visible symptoms, some people—both within and outside the medical community—question its legitimacy.

Common stigmas include:

'It’s all in your head'

Historically, fibromyalgia was dismissed as a psychosomatic disorder, with sufferers being told their pain was imaginary. Although modern science recognises the physiological basis of the condition, this misconception persists in some circles.

Gender bias

The predominance of fibromyalgia in women has led to gendered stereotypes, with symptoms often attributed to emotional sensitivity rather than valid medical concerns.

Workplace challenges

In professional settings, individuals with fibromyalgia may face scepticism when requesting accommodations or taking medical leave. This can lead to feelings of shame or guilt, further compounding stress.

Healthcare challenges

For people living with fibromyalgia, navigating the healthcare system often presents its own set of challenges, with stigma being a significant barrier.

Fibromyalgia is sometimes misunderstood or dismissed by healthcare providers due to its invisible nature and complex symptoms, which lack clear diagnostic markers. This can lead to feelings of frustration, invalidation, and delayed treatment for those seeking support.

How to fight stigma: supporting those living with fibromyalgia

Stigma can make living with fibromyalgia even more challenging, adding social and emotional burdens to the physical ones.

Combating this stigma involves raising awareness, fostering understanding, and creating supportive environments for individuals living with this condition.

1. Raise awareness through education

Many misconceptions about fibromyalgia stem from a lack of understanding. Share accurate information about the condition, including its symptoms, impact on daily life, and the challenges it presents.

Encourage community initiatives and employer-led workshops to increase awareness about invisible disabilities like fibromyalgia.

2. Shift perceptions in the workplace

Workplaces can play a pivotal role in reducing stigma. Advocate for flexible working arrangements and accommodations that enable individuals to thrive.

Training sessions for colleagues and managers can foster empathy and dismantle stereotypes.

3. Promote person-first language

Language matters. By focusing on the individual rather than the condition (e.g., “a person living with fibromyalgia” instead of “a fibromyalgia sufferer”), we can emphasise that person’s agency and identity beyond the condition.

4. Support self-advocacy

Empower those with fibromyalgia to advocate for their needs confidently. Providing resources, such as communication strategies or access to workplace support programs, can help.

Fibromyalgia and employment

The unpredictable nature of fibromyalgia poses unique challenges in the workplace, often affecting productivity, attendance, and career trajectories.

Navigating workplace dynamics

Deciding whether to disclose a diagnosis to an employer is a complex decision. While transparency can lead to support and accommodations, it also carries the risk of discrimination or reduced opportunities.

Necessary workplace accommodations

Employers can support employees with fibromyalgia by implementing reasonable adjustments and modifications, such as:

• Flexible work hours
• Ergonomic workstations
• Remote work options
• Periodic breaks to manage fatigue

Financial implications

For some, fibromyalgia necessitates a reduction in work hours or a shift to less demanding roles, which can result in decreased income.

In severe cases, individuals may need to leave the workforce entirely, creating financial strain.

How APM Employment Services can support people with fibromyalgia with employment

APM Employment Services supports eligible people with fibromyalgia by offering tailored employment services, including personalised job plans, workplace accommodations, and ongoing coaching to navigate challenges like chronic pain and fatigue.

As part of the Disability Employment Services (DES) program, APM Employment Services also educates employers about fibromyalgia to foster inclusive workplaces and advocates for necessary adjustments like flexible hours or remote work.

With a focus on empowerment, our teams help eligible people build confidence, resilience, and long-term career success despite the condition’s challenges.

Coping strategies for living with fibromyalgia

Although there is no cure for fibromyalgia, a combination of medical treatments, lifestyle adjustments, and support systems can help manage symptoms and improve quality of life.

1. Medical treatments

• Medications: Doctors may prescribe pain relievers, antidepressants, or anticonvulsants to address symptoms.
• Therapies: Physical therapy, occupational therapy, and cognitive behavioural therapy (CBT) can provide relief and improve functionality.

2. Holistic and lifestyle approaches

• Exercise:Low-impact activities like walking, swimming, and yoga can reduce pain and improve mobility.
• Nutrition: A balanced diet rich in anti-inflammatory foods can help manage symptoms.
• Sleep hygiene: Establishing a consistent sleep routine and creating a calming bedtime environment can enhance restorative rest.
• Mind-body practices:Meditation, mindfulness, and deep-breathing exercises can alleviate stress and promote relaxation.

3. Building a support system

Support groups, whether in-person or online, offer a space to share experiences and coping strategies.

Connecting with others who understand the challenges of fibromyalgia can reduce feelings of isolation and foster a sense of community.

4. Education and advocacy

Educating oneself about fibromyalgia is empowering. Equipping friends, family, and colleagues with accurate information can foster understanding and dismantle stereotypes.

Advocacy efforts also play a crucial role in increasing awareness and securing better resources for those affected.

The impact of support networks

Support networks play a vital role in the lives of individuals living with fibromyalgia.

A robust support system, whether made up of family, friends, healthcare professionals, or fellow patients, can significantly improve emotional well-being, coping mechanisms, and overall quality of life.

For a condition as multifaceted and isolating as fibromyalgia, having people who understand and validate the challenges can make all the difference.

Emotional support

Living with chronic pain and fatigue often leads to feelings of isolation, frustration, and even depression.

 A strong support network offers a safe space for individuals to express their emotions without fear of judgment. Simply being heard and acknowledged can alleviate the emotional burden that comes with fibromyalgia.

• Family and friends: Loved ones who make an effort to understand the condition can provide much-needed empathy and encouragement. Small gestures, such as checking in regularly or helping with daily tasks, can reinforce a sense of connection and reduce feelings of loneliness.
• Support groups: Connecting with others who have first-hand experience with fibromyalgia can be incredibly validating. Sharing stories, tips, and challenges fosters camaraderie and provides reassurance that one is not alone.

Practical assistance

Chronic symptoms often make everyday tasks overwhelming. Support networks can step in to provide practical assistance, whether it's helping with grocery shopping, preparing meals, or attending medical appointments.

• Caregiver support: In some cases, individuals may rely on caregivers for regular assistance. Having a dedicated caregiver who understands the ups and downs of fibromyalgia can lighten the physical and emotional load.
• Resource sharing: Support networks often help individuals discover resources they might not have found on their own, such as information about disability benefits, workplace accommodations, or specialised treatment programs.

Healthcare

Healthcare professionals are a critical part of any support network. A knowledgeable and compassionate medical team can create a tailored treatment plan that addresses both physical and emotional needs.

Collaborative care—where patients, doctors, therapists, and support groups work together—can lead to better outcomes.

Fibromyalgia and resilience: thriving amidst challenges and stigma

Fibromyalgia is a multifaceted condition that impacts physical, emotional, and social wellbeing.

Understanding its complexities—from its symptoms and risk factors to its societal stigma and challenges in employment—is essential for fostering empathy and support.

While the journey of living with fibromyalgia is not easy, education, advocacy, and resilience can help people thrive despite the obstacles they face.

Resources and further reading

• Fibromyalgia - Better Health Channel
• Everything you need to know about fibromyalgia - Healthline
• 12 tips for coping with fibromyalgia - WebMD

About this article

APM supports people with disability, injury, or a health condition through various programs and services across its businesses, including Disability Employment Services in Australia.

The information contained in this article is for educational and informational purposes only and is not intended as health or medical advice. Always consult a physician or other qualified health provider regarding any questions you may have about a medical condition or health objectives.

When discussing disability, APM’s copy style is to use person-first language and the social model of disability in the first instance. Some articles may use identity-first language or refer to the medical model of disability for clarity or to better suit a specific audience.

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