Demystifying Fibromyalgia: Symptoms, Causes & Treatments
Fibromyalgia (FM) is a chronic condition affecting 2-5% of the population in Australia. FM is associated with widespread pain and tenderness along with other symptoms such as problems with sleep, memory, mood, and fatigue. Because FM is diagnosed based on a collection of symptoms, and not a specific medical test, it is sometimes called a ‘syndrome’ e.g., Fibromyalgia Syndrome (FMS).
Women tend to be more susceptible to fibromyalgia, usually in middle age (20 years–50 years), and there is some evidence to suggest that it may run in families. If you have fibromyalgia, the pain and fatigue can affect many areas of your life including work, daily activities, enjoyment of hobbies, and taking care of your family. Currently there is no known cure for fibromyalgia, but its symptoms can be managed successfully.
Fibromyalgia isn’t an easy condition to grasp, but fortunately it has become better understood over time. Gone are the days when people with this condition were put in the too-hard-basket. But this is not to say that fibromyalgia is simple. Instead of discovering a single cause of fibromyalgia, we now know it to be a result of a range of factors that work together to put your body’s pain system in an overactive state, causing widespread pain and other symptoms. Recent research also suggests the involvement of the immune system in FM1.
Symptoms of fibromyalgia
Fibromyalgia symptoms are different for each person. People often find that their symptoms change over time, and may worsen during times of psychological, social, or physical stress.
The most common symptoms of fibromyalgia are:
Widespread pain & tenderness
Pain in many different muscles, joints and bones – usually aching, stiffness and tiredness of muscles. It may be worse after rest (e.g. first thing in the morning), or after stress or activity. Pain may move around the body – people often describe FM as “whole body pain” because the pain is not confined to a single location within the body.
Fatigue
Fatigue accompanying FM has been described as more profound than “general tiredness” and includes both physical and mental fatigue. People with FM often consider fatigue to be as problematic as the pain, as it makes it difficult to do normal daily activities.
Sleep problems
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.
Cognitive & memory problems
Referred to as “brain fog” or “fibro fog”, people with FM can have cognitive problems with concentration and memory. It can take many forms, such as difficulty concentrating, remembering, finding the right words, navigating, mental cloudiness, and slower thinking.
Depression & anxiety
Depression, anxiety or emotional distress often co-exist with fibromyalgia and can worsen symptoms. The depressive and anxiety symptoms do not need to be at the level of a diagnosable disorder e.g., ‘clinical depression’ or ‘generalized anxiety disorder’ to impact your FM. Depression, anxiety, and FM can contribute to a cycle of pain and negative mood, as each can affect the other.
Sensory sensitivity
Besides feeling pain, people with FM tend to become hypersensitive to light, sound, touch, taste, odors, and medications. People with FM process stimuli and sensations in a way that can make them susceptible to a kind of ‘sensory overload’ where even slightly elevated levels of sound, lighting, temperature and touch can become unpleasant. For some, this leads to avoiding crowds, cold weather, noisy environments like concerts, and even perfumes that may be nauseating.
Stiffness
Muscle stiffness or spasms may occur, along with numbness and tingling in the arms or legs. Stiffness upon waking is common, and can also occur after sitting or standing, or during changes in weather such as fluctuations in atmospheric pressure.
Dryness of eyes or mouth
Some individuals with FM experience excessively dry eyes and mouth even when tear production or saliva is normal13.
Other chronic overlapping pain conditions may also be experienced, as these conditions are thought to share common underlying causes (such as hyperactivity in sensory pathways and increased inflammation in the body):
- Irritable bowel syndrome (IBS)
- Chronic Fatigue Syndrome (ME/CFS)
- Endometriosis
- Low back pain
- Temporomandibular joints (TMJ)
- Postural orthostatic tachycardia syndrome (POTS).
How is fibromyalgia diagnosed?
Fibromyalgia can be hard to diagnose, as currently there are no reliable laboratory tests, x-rays, or other objective tests to diagnose the condition. This is because the problem does not originate from an injury or disease, but is produced by the brain, nervous system and immune system.
In Australia, a diagnosis is usually made by a rheumatologist. They will look for features that are typical of fibromyalgia to diagnose the condition by examining your medical history and a description of your symptoms.
According to the fibromyalgia diagnostic criteria updated in 20162, FM may be diagnosed in adults when all of the following criteria are met:
- Generalized pain, defined as pain in at least 4 of 5 body regions, is present.
- Symptoms have been present at a similar level for at least 3 months.
- Widespread pain index (WPI) ≥ 7 and symptom severity scale (SSS) score ≥ 5 OR WPI of 4–6 and SSS score ≥ 9.
- A diagnosis of fibromyalgia is valid irrespective of other medical diagnoses. Therefore, a diagnosis of fibromyalgia does not exclude the presence of other clinically important illnesses. This means that your doctor does need to consider the possibility that other clinically important illnesses may be present and cannot rely solely upon interpreting your responses to these questionnaires (WPI and SSS).
OR signs that suggest a diagnosis of fibromyalgia include:
- Widespread pain or tenderness lasting three months or longer
- Cognitive symptoms such as memory problems
- Ongoing pain from an injury or a repetitive injury
Your doctor will also perform a physical examination to assess whether you have pain and tenderness in several areas of the body. Some symptoms of fibromyalgia are common to many other conditions.
Therefore your doctor may administer urine tests, blood tests, x-rays and other scans to rule out other possible causes of muscle and bone pain. It is important to note however that you can have fibromyalgia in addition to having other illnesses.
If you think you have fibromyalgia, visit your GP.
What causes fibromyalgia?
The exact cause of FM remains unknown. For many people it starts spontaneously, without any obvious cause. Others however can identify some triggering event that might have led to the onset of FM.
Normally, pain is experienced when there is an injury (e.g. cut, bruise, or broken bone). This reflects the body’s pain processing mechanism working adaptively to protect us from harm.
However with FM, there is not necessarily any damage to organs or tissues - but rather, their bodies process pain differently. FM, is an example of a disorder where sensory information gets amplified by the brain and produces pain (a phenomenon known as central sensitization).
Therefore, the underlying problem in FM is thought to be nociplastic pain or centrally sensitized pain, a disorder of pain-related processing. It’s important to note that whether pain is directly related to an injury, or from a disorder of sensory processing, both are “real” forms of pain and disorders of sensory processing may cause the same (or and even greater) level of pain and suffering.
There are several factors that can trigger central sensitization in people with FM, including:
- Genetics
- Illnesses such as viral infections
- Hormonal abnormalities
- Ongoing pain from an injury or a repetitive injury
- Physical trauma (e.g. giving birth, undergoing operations, car accident)
- Psychological trauma or emotional distress (e.g. abusive relationships, death of a loved one, breakdown of relationship, workplace bullying)
- Having certain conditions, such as rheumatoid arthritis, osteoarthritis, systemic lupus erythematosus (SLE), chronic fatigue syndrome or ankylosing spondylitis;
Note: The factors such as trauma, stress, and illness are considered ‘triggers’ rather than ‘causes’. It is thought that these stressful events trigger changes in body systems (nervous system, hormonal/stress response systems, and immune system) may persist and cause FM symptoms because of their sensitizing effect on the nervous system.
How is fibromyalgia treated?
Today, evidence suggests that the best approach to fibromyalgia is a whole person approach that includes psychological therapies and physical conditioning.
Treatment tends to be a combination of:
Education
The difficulty understanding and explaining the ongoing and fluctuating nature of fibromyalgia can cause added stress. An accurate understanding of FM helps you know how to best approach it, giving you confidence and tools to take control, and ultimately leads to better recovery.
Pacing & exercise
Movement and exercise is not always easy when you are in pain. However, when done at the right dose using pacing and graded activity movement-based approaches, exercise has been shown to improve pain, fatigue and sleep disturbance in people with fibromyalgia.
Diet
Changing your diet can change pain by more than 1 point on a 0-10 scale3. A range of diet changes seem to be able to help with this, which can allow people to pick and choose what suits them best. Typically, the best approach is to eating a well-balanced diet rich in antioxidants and vitamin B123. Eat foods that give you energy (e.g. fresh, whole foods high in fiber) and avoid foods that could possibly increase inflammation. These might be best discussed with a dietician who can help tailor your diet.
Psychological approaches
Psychology affects things like stress hormones levels, inflammation, and nervous system sensitivity– thus having real physical and biological effects on our bodies that result in real symptoms. There are many different psychological techniques, for example, Cognitive Behavioral Therapy (CBT) allows you to attend to your own thoughts and actions, learn skills to reduce and manage symptoms, and change the way you think about pain. Counselling offers psychological support that helps deal with other issues that arise as a result of FM.
Medication
The right medications when used correctly can be helpful in the recovery process. These are best discussed with your trusted doctor and pharmacist. However, we think they are best used as ‘therapy-enablers’ rather than ‘pain-killers’. This is because they are unlikely to help in the long-term but may help you in the short-term - allowing you to better engage in psychological and movement-based approaches that will reshape your body and pain system overtime.
Sleep
Sleep therapy is a critical part of FM treatment, because poor sleep is linked to pain and other symptoms like fatigue. It is said that the body operates in two modes: Fight or Flight or Rest and Repair. Since sleep is critical to facilitating the rest and repair state, improving sleep can be an important step. Unsurprisingly, better sleep doesn’t only help improve pain and fatigue, but also other problems such as anxiety and depression.