Misunderstood and overlooked, awareness of fibromyalgia and its symptoms is critical to finding treatments for this debilitating condition.

What is fibromyalgia?

Fibromyalgia is a chronic disorder characterised by heightened sensations of pain throughout the body, cognitive impairments and sleep disturbances. The average age at which fibromyalgia is diagnosed is 35-45 years old – yet most people have already experienced symptoms and pain earlier in life. The condition affects 2-4% of the global population, with women affected twice as often as men. On average, it can take over two years from the first symptoms to be diagnosed, with visits to at least three physicians to reach this point. While scientists don’t understand what triggers the onset of fibromyalgia, it is thought to arise from misprocessing in our central nervous systems: where the signals between our brain cells misinterpret everyday sensory experiences, and heighten sensitivity to temperature, lights, noise and touch. Due to the greater prevalence of the condition in women, it is thought female sex hormones may also have a role to play in the disorder. 

Causes of fibromyalgia

The causes of fibromyalgia are likely highly complex and interconnected – though scientists and clinicians do have some theories as to how the disorder develops.

One causative factor may be central sensitisation. This, as mentioned above, is where the cells in our brain become highly sensitive to sensory experiences. Stimuli that should not be registered as painful suddenly become highly unpleasant experiences, and characteristic tender points arise all over the bodies of sufferers. A second potential trigger for fibromyalgia is dysautonomia, which occurs when the part of our nervous system taking care of our ‘automatic’ processes – like breathing and our heart beating – goes awry. This has been linked to symptoms of fatigue and sleep disturbances, as well as painful digestion and to headaches.

Finally – and here, please note the mention of abuse and skip if need be – a body of research has shown links between sexual abuse and other similar trauma experiences and the onset of fibromyalgia. Those with fibromyalgia are more likely to have a psychiatric diagnosis such as anxiety; depression; and post-traumatic stress disorder, all of which are more common in women. These conditions are also often associated with a traumatic experience; women in particular also have greater re-experiencing of traumatic events and greater overall levels of dysphoric arousal, describing a general sense of unease. Even more damning, the parts of our brain physically altered after a traumatic event appear to be those that increase the risk of fibromyalgia in women.

Fibromyalgia is also associated with more common-place, lifestyle-associated risk factors. Obesity and smoking have been linked to an increased risk of a fibromyalgia diagnosis, as has having another rheumatic condition such as arthritis or lupus. Genetics also play a part, with an increased risk of diagnosis if a close relative also develops the disorder. Several genes have been proposed to increase susceptibility to fibromyalgia, and may even explain up to 50% of disease development. And alongside emotional trauma, physical trauma – particularly to the brain or spinal cord – can also increase the risk of developing fibromyalgia.

Symptoms of fibromyalgia in women

Fibromyalgia presents itself all over the body and completely disrupts the rhythms of daily living. To be able to advocate for yourself and a condition that many clinicians don’t have diagnostic knowledge of, it’s critical to know signs and symptoms of the disorder. The three major symptoms are pain; disturbed sleep; and general sense of fatigue. 

Arguably the most debilitating symptom of fibromyalgia is the experience of pain: located throughout the body, it can be felt as a deep aching or burning. While sometimes this is a general ache or deep burning throughout the body, more often it is located at well-categorised tender spots. The 18 tender spots – made up of 9 pairs – are found at:

• The neck
  • Lower front and upper neck at the base of the skull
• Shoulders and arms
  • Outer part of the elbow
  • Top of the shoulders
  • Across the shoulder blades
• Upper middle chest
• Inner knees
• Outer buttocks
• Hip bones

To identify a tender spot, press down with your thumb until the thumbnail turns white. This is similar to 4kg of pressure, and this should not just elicit a slightly tender feeling: it should be truly painful.

These specific points are thought to be a miscommunication between our nerves and the brain. Reduced inhibition in the brain occurs when the central nervous system no longer regulates our pain receptors appropriately. Rather than mitigate a pain response in a situation that we consciously know is not painful, the brain begins to send pain signals. Along a similar vein, hypersensitivity refers to our nerves sending too many messages, leading to a normal situation instead eliciting pain.

Other more specific symptoms include:

• Fatigue that cannot be rectified by sleep, especially in the morning
• ‘Fibrofog’: experiencing cognitive slowness and memory issues
  • Approximately 50% of patients report cognitive dysfunction, associated with higher levels of pain. About 75% of patients further report concentration, memory and multi-tasking issues, potentially due to pain compromising attention systems.
• Disturbed sleep
  • Difficulty falling asleep/staying asleep; waking feel unrefreshed; waking during sleep.
• Muscle exhaustion, cramping and twitching
• Mood dysregulation
• Headaches and sensitivity to loud noises, cold temperatures, perfumes and bright lights
• Digestion problems
• Tingling/numbness of extremities
• Depression, anxiety or other mood disorders

Women more commonly experience morning exhaustion, general pain and digestion symptoms when compared to men with fibromyalgia. In 2015, one study found women with the condition have a higher incidence of painful menstruation and frequent experiences of premenstrual syndrome. During menstrual periods, these women also reported extreme pain in their lower abdomen and back prior to menstruating. Hormonal changes during the menstrual cycle or during pregnancy can also trigger symptom flare-ups, particularly when hormones drop. This has been linked not only to menstruation-associated symptoms, but also to greater disturbance of sleep, fatigue and chronic headaches. Interestingly, changes in barometric pressure – such as a sudden drop in temperature or humidity – have also been reported as a trigger for symptoms in women.

Diagnosis

Unfortunately, the average time to diagnosis for fibromyalgia is three months – during which the sufferer is experiencing widespread and chronic pain. Often, those with the condition will require consultation with a rheumatologist first to rule out other potential conditions or comorbidities such as rheumatoid arthritis or lupus. In 2009, a study found that as many as two out of three people told they had fibromyalgia actually had a different condition. Fibromyalgia can be a misdiagnosis in many rheumatic diseases – such as rheumatoid arthritis and myofascial pain syndrome – and neurological conditions – such as multiple sclerosis and Parkinson’s disease. Other diseases that need to be ruled out are endocrine disorders, encompassing thyroid dysfunction and vitamin D deficiency, as well as gastro-intestinal conditions and early malignant cancers.

Generally, diagnosis of fibromyalgia is made after a physical examination; laboratory probes; and by extensive evaluation of a person’s medical history. Clinicians will be looking for things like childhood pain; emerging physical symptoms after stress; and general hypersensitivity, among other signs. While laboratory tests are a less common diagnostic tool, those that are used probe for blood counts and thyroid function, as well as checking liver and kidney function and electrolytes levels in the body. 

Treatment

While no therapies or treatments currently exist that wholly cure fibromyalgia, management of the condition is focused on symptom relief and improved quality of life. A personalised approach is often taken, using multidisciplinary treatments and patient education of the condition. Associations world-wide have explored a number of these treatments, recommending them on the basis of efficacy. The most endorsed treatments are for exercise and movement-based methods of relaxation. Other alternatives that have been shown to have a small impact on improving the experience of pain are acupuncture and psychotherapy, as well as some medications that target severe pain and sleep issues. Chiropractic methods are strongly recommended against, as are steroidal medications and opioids, due to both a lack of effect and safety concerns.

Exercise is the most powerful intervention for managing the symptoms of fibromyalgia. Much evidence demonstrates its ability to improve sleep and quality of life, as well as reduce pain and fatigue. It’s thought exercise might modulate pain through hormonal pathways: by regulating serotonin, a hormone key to sleep and anxiety, and reducing cortisol, the stress hormone. But is there a type of exercise that’s most effective? Research has shown that aerobic exercise can mediate autonomic nervous function in fibromyalgia sufferers, and has greater effect on reducing symptoms than resistance exercise. In particular, exercise such as walking, dancing, cycling and swimming are thought to slightly decrease pain, improve movement and reduce digestive and other autonomic dysfunction.

Additionally, meditative exercises – such as yoga and tai chi – have favourable effects on sleep improvement, pain and fatigue while resistance exercise can effectively reduce mood symptoms and quality of life.

Medicating fibromyalgia patients is a secondary treatment, as there are few agreed guidelines for treatment and management. Anti-depressants are a common treatment, aiming to improve quality of life, while drugs targeting the serotonin pathway are also purported to improve symptoms. However, in many cases the side-effects of these treatments outweigh the benefits. Anti-seizure medication has also been used to reduce pain, and may be effective in as much as 18% of sufferers – yet it is not clear why the drug works in only a subset of sufferers.

Psychotherapy is an increasingly popular approach to treating fibromyalgia. While no single intervention appears to be the most beneficial, cognitive-behavioural therapy when used in combination with a multi-disciplinary program appears to improve coping and living with pain, as well as insomnia.

Many treatments are still in the testing phase, and need further trials to understand their efficacy in fibromyalgia. This includes massage and acupuncture therapy, modulation of the brain using electrical stimulation, and sleep hygiene plans. 

Outlook

While it can last a lifetime, the silver lining is that fibromyalgia doesn’t cause any direct damage to the body, and it isn’t a fatal diagnosis. Most people diagnosed with the condition still continue in the workforce with some changes to accommodate their symptoms. Yet it is important to be aware that if diagnosed with fibromyalgia, you should be ready to manage symptoms for a long time. To do this, you’ll need the support of trusted health professionals who can help you create a multi-disciplinary treatment approach, so you can maintain a high quality of life. In Australia, you can find support at the websites listed below:

https://fibromyalgiaaustralia.org.au/

https://msk.org.au/fibromyalgia/