Everything You Need to Know about Fibromyalgia

Fibromyalgia is a condition characterized by widespread pain, fatigue, sleep, concentration and mood issues. The underlying problem in fibromyalgia is thought to be nociplastic pain or centrally sensitized pain, a disorder of pain-related processing as well as imbalance in the immune system. Symptoms often begin after an event, such as trauma, stress, and illness that are considered ‘triggers’ rather than ‘causes’. For many people it starts spontaneously, without any obvious cause.

Women are more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have other conditions such as tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression.

While there is no cure for fibromyalgia, the gold stand approach to treatment considers a biopsychosocial approach including lifestyle factors including managing energy, exercise, mood as well as minimizing stress.

What is fibromyalgia?

Fibromyalgia is a complex condition typically marked by widespread pain, fatigue, brain fog, and poor sleep, just to name a few. Often misdiagnosed and misunderstood, even nailing a simple definition is difficult - but the latest scientific evidence confirms that fibromyalgia is a disorder of the central nervous system affecting pain processing, and also involves our immune system. So if you think that sounds a bit ambiguous and complicated at the same time, well, you’re right. Fibromyalgia is a condition involving the complex interactions between the neuro-immuno-endocrine systems.

Worldwide, about 5% of the population live with fibromyalgia  with a higher incidence is women than in men1.

Advances in fibromyalgia understanding and clear links to the immune system has resulted in debate about whether fibromyalgia is considered an auto-immune disease. At this stage there is still insufficient data about the mechanisms by which it develops, progresses, and either persists or is resolved to classify it in this way2.

Fibromyalgia causes

Everyone’s fibromyalgia is different: different locations, fluctuations in pain, severity of symptoms. If you are experiencing this, whether you are diagnosed or not, it's understandable to want to know the cause of your debilitating symptoms - it literally feels like it’s taking over your life. There has to be something going on, right?

  • Central sensitization. Research suggests fibromyalgia is likely a disorder of the central nervous system affecting pain processing, and also involves our immune system3. An  underlying process in fibromyalgia  is thought to be nociplastic pain or centrally sensitized pain, a disorder of pain-related processing. And to be very clear, the pain is still very real. The cause  however, is just not damage but sensitization. Your system has become overprotective.
  • Genetics.  As we learn more about the human genome we are finding many genes linked to pain. Because fibromyalgia tends to run in families, there may be certain genetic mutations that may make you more susceptible to developing the disorder. Researchers have been keen to identify if there is a specific gene associated with a higher risk of developing fibromyalgia. Short answer - yes, evidence suggests that around 50% of fibromyalgia can be explained by genetics4.
  • Infections. Some illnesses appear to trigger or aggravate fibromyalgia. Inflammation regulates the sensitivity of our nerves in our bodies. It also regulates healing and other processes related to the health of our body’s tissues. When inflammation processes are out of whack, we are likely to experience reductions in our physical health and an increase in painful problems.
  • Physical or emotional events. For the central nervous system to become sensitized there is often a situation/event/circumstance such as  trauma, stress, illness or injury.  It is thought that these stressful events trigger changes in body systems (nervous system, hormonal/stress response systems, and immune system) and these may persist and cause fibromyalgia  symptoms because of their sensitizing effect on the nervous system.

Fibromyalgia symptoms

Fibromyalgia symptoms are different for each person. People might describe the pain as feeling like you are aching all over. Often symptoms change over time, and may worsen during times of psychological, social, or physical stress.

The most common symptoms of fibromyalgia are:

  • Widespread pain. Pain in many different muscles, joints and bones - usually aching, stiffness and tiredness of muscles.
  • Brain fog. Fibromyalgia can cause persistent physical or mental fatigue (commonly referred to as ‘brain fog’). It can seem as though you have difficulty concentrating, remembering things, making decisions, and have a general feeling of fogginess, or lack of focus.
  • Fatigue. Fatigue experienced with fibromyalgia is more than simple tiredness. In fact, fatigue exists on a continuum, with tiredness on one side and exhaustion on the other.
  • Sleep disruptions. Some people with FM may find it difficult to fall asleep or stay asleep. Even if they’re able to sleep through the night, they’re likely to feel unrefreshed upon waking, as though they did not sleep at all. Fibromyalgia is also characterized by non-restorative sleep, nocturnal awakenings, obstructive sleep apnea, and the urge to sleep during daytime hours.
  • Mood & emotional changes. Depression, anxiety or emotional distress often co-exist with fibromyalgia and can worsen symptoms.
  • Tender points. The term “fibromyalgia” actually relates to the symptom of extreme tenderness known as “tender points”. Commonly, tender points are symmetrical, present near your joints, and are often found at the base of the skull and neck, between the shoulder blades, and around your hips and knees.
  • Sensitivity. You may notice changes in how sensitive you feel to things like touch, light, odors, sounds, changes in temperature, and pressure.

What are some rare fibromyalgia symptoms ?

Everyone is different and how they experience fibromyalgia varies depending on their background and experiences.

There are other potential symptoms that are relevant and related to fibromyalgia, including:

  • Numbness and tingling. Also known as paresthesia, some people experience feelings of numbness or tingling in different parts of the body.
  • Restlessness or muscle contractions. Also known as dystonia this can be felt in various body parts but most commonly in legs and restless leg syndrome is a common co-occurring condition.
  • Bladder pain and pressure. Also known as interstitial cystitis, some people experience pelvic pain and urinary incontinence.
  • Headaches.
  • Digestion issues.
  • Facial and jaw pain.
  • Dryness of eyes or mouth.

So you can probably see how complicated fibromyalgia is and why it can so commonly be mistaken for other conditions. If you are experiencing some of these symptoms you may want to discuss with your healthcare professional and keep reading if you want to know more about managing these symptoms.

Are there stages of fibromyalgia?

Often people refer to a diagnosis in stages and these relate to how long the condition has been present and its severity5.  For example:

  • Stage 1. Regional fibromyalgia with classic symptoms
  • Stage 2. Generalized fibromyalgia  with increasing widespread pain and some additional symptoms
  • Stage 3. Fibromyalgia with advanced and associated conditions, increasing widespread pain, increased sleep disturbances, and chemical sensitivity
  • Stage 4. Secondary FM reactive to disease.

Additionally some people refer to the 7 stages of fibromyalgia which refers to progression of symptom intensity and level of impact/disability.

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What are the risk factors for fibromyalgia?

  • Gender. Gender is the biggest risk factor for fibromyalgia with women more than twice as likely to have fibromyalgia than men. Fibromyalgia in men is likely to be underdiagnosed for various reasons including stigma, lack of self reporting and misdiagnosis.
  • Background. Due to the impact on the nervous system, trauma and experiences of high stress is also a major risk factor. Stress and pain are highly comorbid, and show significant overlap in both conceptual and biological processes
  • Co-occuring conditions. There are other conditions that occur with fibromyalgia at much higher rates such as rheumatoid arthritis, lupus and others (see more below).
  • Age. While fibromyalgia is predominantly diagnosed in midlife, you are more likely to have fibromyalgia as you get older.

How is fibromyalgia diagnosed?

A clinical diagnosis of fibromyalgia is made by a healthcare physician, pain specialist or rheumatologist after a clinical encounter that comprises a complete history and physical examination. If you are seeking a diagnosis the doctor will want to know as much information as possible about your symptoms - when they started, what type of symptoms you experience, what situations make them worse etc. It can be helpful to start tracking your symptoms as a way of having all this information to hand when your appointment rolls around.

A rheumatologist, who is trained in ​​trained in rheumatic diseases that affect joints, bones, muscles and other connective tissues, may help with your formal diagnosis and will conduct a physical examination including tender points and possibly request blood tests, urine tests and/or scans such as an X-ray or ultrasound. Doctors rely on established diagnostic criteria, such as the revised 2016 American College of Rheumatology (ACR) Criteria6. These criteria consider factors such as widespread pain, symptom severity and duration, and the absence of other underlying conditions.

While fibromyalgia can be diagnosed from your symptoms alone, this does not exclude that you might have a rheumatic disease as well – it is not uncommon to have both. There is no one exclusive test for fibromyalgia. Although, there are a few questions that you can ask yourself to determine how likely it is that you might have fibro. Take our fibromyalgia self-test and symptoms quiz to see where you land, then please speak to your doctor for a diagnosis and medical advice.

There can be a pot of medical jargon and terminology to get your head around so be kind to yourself as you build up your knowledge and understanding. Remember too that you are always within your rights to ask questions of your practitioners and advocate for yourself - after all, you know your body the best and want to firmly put yourself in the driver's seat on, what can be, a turbulent health journey.

What conditions are linked to fibromyalgia?

The symptoms of fibromyalgia can often mask many other conditions and diagnostic tests should be arranged to investigate other commonly associated medical conditions.  Co-occuring conditions include:

  • Chronic fatigue
  • Complex Regional Pain Syndrome
  • Irritable Bowel Syndrome
  • Bursitis
  • Lupus
  • Rheumatoid Arthritis
  • Joint hypermobility

Many of these conditions have underlying causes linked to central sensitization.

There may be a few clues that point towards this including if the pain is random and isn't consistent with structural damage or if pain feels worse with stress/emotions and sensitivity to light/odours7. In these instances pain may be classified as nociplastic pain.

Ensuring you share your symptoms with a relevant medical professional who will likely request a number of diagnostic tests to investigate other commonly associated medical conditions.

What triggers fibromyalgia flares?

When a fibromyalgia flare hits, it can feel like someone has taken all your symptoms and amped them up to their maximum - and a flare up can last anywhere between a few days to multiple months.

Fibromyalgia flare ups can be triggered by:

  • stress
  • Injury or illness
  • hormonal changes
  • changes in treatment or routine
  • diet
  • lack of sleep
  • overdoing it
  • changes in the weather

You may have detected a pattern emerging in what causes fibromyalgia to flare up - the causes are unsurprisingly similar to the root causes of fibromyalgia  - the complex interaction and sensitivity of the neuro-immuno-endocrine system.  Once these systems get into full swing, become sensitized and overprotective, pain and other symptoms ramp up right alongside it all.

Recovering from a fibromyalgia flare requires insight and preparation. One key part is to identify your triggers are critical to successfully managing your fibromyalgia.

What medications help fibromyalgia?

While medication can play a role in your overall pain management program, medication shouldn’t be relied on as the first or only source of treatment – medication is an enabler; something that can remove blockers from your life so that you do other things in an effective pain-management approach that will help to improve your condition. These include education, lifestyle changes and psychological support (see more below).  Some medications commonly prescribed for fibromyalgia include:

  • Antidepressants. For example, Amitriptyline and Duloxetine
  • Pain and inflammation modulators. For example, Low Dose Naltrexone (LDN)
  • Pain killers. People often ask 'what is the best painkiller for fibromyalgia?' but often it is just simple over the counter medications such as aspirin and ibuprofen that can provide relief.
  • Anti-seizure medications. These can be prescribed to assist in dampening the over sensitized nervous system. Examples include Pregabalin and Gabapentin.

Previously opiate painkillers were prescribed for chronic pain and while they can be effective for acute pain, because of their side effects and addictiveness, opioids are not recommended for long-term pain relief.

How is fibromyalgia treated?

So, maybe you have a diagnosis of fibromyalgia, now what? Living well – despite pain – may seem a contradiction in terms, but it truly is possible, and the ‘how’ is within reach. We know the best treatment for fibromyalgia is one that takes a biopsychosocial approach.

Below we outline a number of ways fibromyalgia is treated including the latest evidence based approaches.

What are the evidence-based approaches for living well with fibromyalgia?

You live in your body so you know a lot about how it feels, functions and behaves. You are definitely the expert here. An accurate understanding of fibromyalgia helps you know how to best approach it, giving you confidence and tools to take control, and ultimately leads to better recovery.

There are some excellent evidence based approaches to managing pain and fibromyalgia (and we can dive into these in more depth in a future article) but for now, here is a list:

Education. Research has now shown that how we understand pain influences the way pain-related information is processed in the brain8. So simply learning more about your condition can help reduce your pain. Learning more about fibromyalgia - and also debunking some of the myths and misconceptions out there, can help reduce your fear and worry and start building more sense of safety and control into how you manage living with fibromyalgia into the future.

Movement and exercise. Recent research in fibromyalgia specifically shows that exercise is effective at lowering your average pain level9, can improve mood and provide beneficial changes in the structures and functions of muscles, joints, and even a dampening of the nervous system (great for those overprotective fibro systems!). Movement can be small - like sitting less and you can definitely make it fun and meaningful to you.

Pacing. By determining the amount of activity you can do without causing pain and slowly build up your activity.  This type of activity pacing can be effective in reducing fatigue and psychological distress and improving physical function10.

Diet. Diet impacts pain by the role it can play in affecting immune function and mental health.

Psychology. The way we think about pain (and the flurry of emotions that come along with it) can play a big role in how we experience pain. There are a number of evidence based approaches to addressing the psychological aspects to fibromyalgia treatment including:

  • Cognitive Behavior Therapy (CBT). CBT is probably the most common psychological approach to treating fibromyalgia and has been shown to be significantly better than other treatments for short-term pain reduction11.
  • Mindfulness. Studies have shown moderate evidence for the use of Mindfulness-Based Interventions (MBIs) in fibromyalgia12 by assisting in cultivating greater non-reactive sensory awareness,  acceptance and non-reactivity provide a regulatory effect on the nervous system.
  • Acceptance and Commitment Therapy (ACT). This therapy incorporates being mindful awareness to situations so you can bring a more accepting attitude as well as take effective action, guided by your values.
  • Pain Reprocessing Therapy. Initial studies suggest this type of intervention can be highly effective with two-thirds of patients treated with PRT for four weeks were pain-free or nearly pain-free13.

Investigating and understanding your flare up triggers. When your fibromyalgia symptoms flare up it is good to be prepared and figure out a combination of helpful strategies to see you through.

Managing energy levels and sleep. Managing your energy levels requires an understanding of what drives your own fatigue and using a pacing approach. Adopting effective sleep hygiene practices can assist in forming routines for a more restful sleep.

Addressing stress. Stress plays a big role in the activation (and sensitivity) of our nervous systems. So any activity that can help bring down the stress levels, encourage feelings of calm and safety, will help reduce symptoms.

Support networks. It's okay to ask for help and let your loved ones know the ways they can best support you.

Living well with fibromyalgia also involves...

We have outlined some treatment options that can really make a difference to your pain levels and your sense of overall wellbeing. Unfortunately there are no quick fixes or magic pills and often, the approach is to come at your fibro from multiple angles forming a holistic overall plan for living well including your own self-care and addressing any potential obstacles that might be holding you back in your recovery efforts. And remember, while the many symptoms of fibromyalgia are challenging and may result in making some adjustments to your life, they don't need to mean you have to stop doing things you enjoy.

Living well with fibromyalgia involves those around you. Whether it is asking for help or gaining the support you need at work, it is important that the people you care about also understand fibromyalgia. They might be struggling between providing too much or too little support - finding the balance is tricky!  Perhaps you can share this article with them?

As you manage your energy and pain levels, you may want to consider the other parts of your life that are likely impacted by managing your fibromyalgia symptoms such as:

  • Work. Staying at work may require modifications, flexibility, and lots of communication, but continuing to work (particularly in a job you enjoy) provides purpose and meaning.
  • Identity. There might be an adjustment period as you get used to your 'new you' identity as you learn more about managing your conditions and make some changes to your lifestyle commitments and priorities.
  • Parenting. Parenting can be challenging at the best of times – but parenting with fibromyalgia requires healthy doses of planning, strategy and self-compassion.
  • Feelings. Continuing to talk about and express your emotions is also an important part of the journey.
  • Intimacy. Pain can make sexual encounters difficult to enjoy.

Gaining support from people who understand can be helpful - such as a support group or even an online community. You might like to consider joining our Living well with Fibromyalgia Facebook community.

Can you die from fibromyalgia?

Some people do wonder if fibromyalgia is a terminal condition and no, you cannot die from fibromyalgia. In fact, as we have outlined, it is possible to live well with fibromyalgia when you learn more about the underlying causes and how to effectively minimize and manage symptoms. Sure, maybe there will be a few modifications and tweaks but you can fully participate in an enjoyable meaningful life with fibromyalgia - just like some of our amazing fibro warriors.

What's the latest research on fibromyalgia?

Research on fibromyalgia is increasing and we now know more about the condition than previously - and fibromyalgia is no longer lumped in the “too hard basket”. If your doctor or support network could do with some updating, perhaps share this article as a way to open up the discussion.

In the past 30 years, the scientific research focusing on fibromyalgia has increased. We now understand more about fibromyalgia largely due to an increased awareness and shared interest of patients, patient advocacy and self-help groups, clinicians, researchers, and the pharmaceutical industry14.

The latest research findings include:

There are several promising treatments, diagnostic tools and therapies for fibromyalgia including15:

  • Ketamine infusions
  • Vitamin D
  • Hormone therapy
  • Neurostimulation techniques
  • Stem Cell Therapy16
  • Immersive virtual reality17

More recently, the literature also suggested that a biopsychosocial model is most appropriate as it highlights the complex underpinnings of this condition and places necessary importance to psychosocial factors in the predisposition, triggering, and chronification of symptoms18.

Overwhelmed by it all? Just start where you are….

Hopefully, after reading some of our basic guide to fibromyalgia, wherever you are on your journey, you now feel a bit more confident you can learn to live well. Remember, you are not alone, there is support available from within your networks, from the fibro community and from us at MoreGoodDays® because we are committed to making quality healthcare affordable.  

Sometimes living with fibromyalgia can be confusing and overwhelming. We get it. If you would like some support, delivered in small bite size, easy to understand chunks, we are here to help. For more information on our evidence-based fibromyalgia pain management program, please download our app today!

If any of the content of this article has raised concerns for you and you need immediate assistance, please contact:

  • Lifeline – free Australia-wide crisis support and suicide prevention service, 13 11 14 (24 hours, every day) or text 0477 131 114 (24 hours, every day).
  • Beyond Blue – free mental health and wellbeing information and support for all in Australia, 1300 22 4636 (24 hours, every day).
  • Blue Knot Foundation Helpline – information, support or referral for adult survivors of childhood trauma and abuse, 1300 657 380 (9am to 5pm, every day).
  • Full international list of Crisis Support Helplines.