Fibromyalgia is a complex disease, affecting 1% to 5% of the population, characterised by chronic widespread pain persisting for more than three months without an obvious cause. Joint stiffness, fatigue, sleep disturbance, memory loss, brain fog, digestive issues and depression are additional symptoms of fibromyalgia.
There is currently no cure, only management through medications, lifestyle changes, diet and natural therapies. Self care and managing stress levels is very important to prevent symptoms from getting worse.
Living with fibromyalgia can be an extremely isolating experience due to the debilitating symptoms and invisible nature of the disease. Often someone living with fibromyalgia won’t look ‘sick’ but feel very unwell.
The pathogenesis for fibromyalgia has been long debated. The latest research indicates that genetics and autoimmunity play a pivotal role in the manifestation of fibromyalgia.
Autoimmunity // autoimmunity is where the immune system mistakes it’s own tissue for antibodies, such as a virus or bacteria, it would normally be required to attack. The immune system proceeds to mistakenly attack the healthy tissue in the body. There is more research being conducted into the autoimmune factor of fibromyaliga.
External trigger // an external trigger is required for the immune system to start attacking healthy tissue. This can include stress, nutrition, trauma, pregnancy and childbirth, environmental toxins and bacterial infections.
Risk factors // you are more likely to have fibromyalgia if you are female, have a family history of fibromyalgia or a family history of other autoimmune diseases.
The primary symptoms are widespread pain and fatigue. Chronic pain and fatigue can cause other symptoms in the body including trouble sleeping, headaches, depression, anxiety, brain fog or trouble focusing and paying attention, memory loss, dry eyes, digestion and bladder problems.
Diagnosis // to be diagnosed with fibromyalgia, you must have experienced widespread pain for longer than 3 months. This means pain must be above and below the waist, and on both sides of the body. Your practitioner might use the trigger point test to determine where your pain is.
Due to the complex nature of fibromyalgia, it takes an average of 2 to 3 years before a diagnosis is made with most people seeing more than 3 physicians during that time.
Flare ups // someone with fibromyalgia will experience a ‘base level’ of pain which increases during a flare up. Flare ups can last days to weeks and be caused any stress on the body – including emotional stress, physical injury, illness, over exercising, under exercising, dehydration, food intolerances, changes in weather, hot or cold weather or too much exposure to sunlight. What causes flare ups will differ between individuals.
A person with fibromyalgia can’t simply ‘push through the pain’ as it will only worsen the symptoms and lengthen the flare up.
Treatment and management
Currently, there isn’t a cure for fibromyalgia. Instead, treatment focuses on managing the symptoms. Management options include medications, lifestyle changes, dietary recommendations and natural therapies.
In the management of fibromyalgia, there is an emphasis on reducing stress on the body. This includes avoiding strenuous exercise, food intolerances and environmental toxins.
Medication // common medications includes pain relievers, antidepressants and anti-seizure medications. As there is no cure, the benefits of medication have to be considered against the long term side effects. Medications such as ibuprofen (Advil) and paracetamol are not recommended as they haven’t been proven to help fibromyalgia.
Prescription pain relievers such as tramadol and other opioids, can be effective in managing pain associated with fibromyalgia. However the dose is often required to increase rapidly and can have many negative side effects. Antidepressants including amitriptyline (Endep), duloxetine (Cymbalta), milnacipran (Joncia) and pregabalin (Lyrica) are often prescribed for pain management. Research has found these medication reduced fibromyalgia pain in about 10 out of 100 patients. Further, between 5-12% of patients stopped taking the medication during a 3-6 month period due to side effects.
Anti-seizure medications including Gabapetin may blocks the nerve cells from sending pain signals. Research into the use of gabapetin for fibromyalgia found 49% of people had reduction in pain. However, 31% also experienced reduced pain with the placebo.
There is growing research supporting the use of CBD oil for fibromyalgia. This is promising as it appears to be effective in reducing pain and inflammation with few side effects.
Lifestyle changes // managing stress effectively is very important for the management of fibromyalgia as stress can exacerbate symptoms. This may include removing the source of stress if possible or establishing stress relieving techniques such as meditation, yoga or mindfulness. Getting quality sleep also improves quality of life and reduces pain associated with fibromyalgia. Sleep hygiene can be improved by limiting screen time before bed and going to bed and getting up at a consistent time.
Exercise // research has found individualised exercise, including land- or water-based aerobics, strength training, yoga, and stretching activities, are effective in improving physical function for people living with fibromyalgia. However there needs to be an individualised approach to exercise because too little exercise will not benefit those with fibromyalgia and too much exercise can exacerbate symptoms and cause a flare up.
Diet // if you’ve been diagnosed with fibromyalgia, try to eat a balanced diet overall. Nutrition is important in helping you to keep your body healthy, to prevent symptoms from getting worse, and to provide you with a constant energy supply. It is recommended to avoid refined sugar and carbohydrates, processed foods, unhealthy fats and alcohol. Some people with fibromyalgia report feeling better by following the autoimmune protocol (AIP), keto or low-carbohydrate diets.
Gut health // the composition of the gut bacteria has been found to be altered in individuals with fibromyalgia, with an abundance of a small subset of bacterial species. These bacterial species could affect pain, fatigue, mood and other symptoms. Further, the abundance of some these species was correlated with symptoms severity. Working with a health professional to achieve a healthy gut microbiome can reduce the severity of some fibromyalgia symptoms.
Natural therapies // acupuncture, yoga, hydrotherapy, meditation, tai chi, floatation therapy, kinesiology, massage therapy and infrared saunas have been proven in various studies to help in the management of fibromyalgia symptoms.
Living with fibromyalgia
Managing fibromyalgia is a full time job // fibromyalgia affects what someone eats, how much exercise they do, when they exercise, how much they move around, how they get to places, their sleep, what jobs/careers they can do, what events they go to, how much they socialise, the clothes they wear, what they can and can’t do with friends. It affects their memory, their balance, their energy levels, their moods (being in pain is frustrating). It is the reason for their bed time routines and the reason they can’t do what they want, when they want. So many areas of their life are touched by fibromyalgia.
The path to a diagnosis is exhausting and disheartening. As we currently don’t know the biological markers for fibromyalgia, many rounds of tests will come back as ‘normal’, resulting in being told there’s ‘nothing wrong’ for years before a diagnosis is considered.
Treatment is expensive and constant. Many therapies aren’t covered by private health insurance and fibromyalgia isn’t recognised as a disability. The symptoms are debilitating and affect the ability to work and socialise.
Many people living with fibromyalgia experience isolation, discrimination and ableism due to the invisible nature of the disease. Often people with fibromyalgia will do as much as they can on a low pain day and this is often seen as them being ‘better’ which this is not the case. No day is truly pain free, they are just experiencing a lower level of pain compared to other days. You can do everything right and still have a flare up. During a flare up, someone with fibromyalgia might be bed-bound, house-bound or struggle with daily tasks.
Someone living with fibromyalgia might not necessarily fit the image of what someone who is sick or has a chronic illness might be perceived to looks like. It’s not helpful to say ‘but you don’t look sick’. For someone with fibromyalgia, it can be helpful if you ask open questions about how they’re feeling and what they’re experiencing, and listen without judgement. Flare ups can be unpredictable so be flexible with your plans and offer help where appropriate.
What you really need to know about fibromyalgia:
- Fibromyalgia is characterised by chronic, widespread pain. Other symptoms include fatigue, trouble sleeping, headaches, depression, anxiety, brain fog or trouble focusing and paying attention, dry eyes, digestion and bladder problems.
- There is no cure for fibromyalgia, only management through medications, lifestyle changes, diet and natural therapies.
- Living with fibromyalgia can be an extremely isolating experience due to the debilitating symptoms and invisible nature of the disease.