I was diagnosed with fibromyalgia last year although I’ve probably had it for many years.
It is very common for the diagnosis to take a few (sometimes many) years as the symptoms can be vague and similar to other conditions.
Fibromyalgia is a chronic (long term) condition characterised by widespread body pain and extreme fatigue.
Each sufferer of fibromyalgia experiences the condition differently.
For me, fatigue is the worst symptom. However, for most people pain is most prominent and some people’s illness will be dominated by the other symptoms.
What are the symptoms of fibromyalgia?
- Pain – usually constant and widespread but may be worse in certain places such as the back and neck. The pain can be sharp, stabbing or dull in nature. Sometimes there are ‘trigger’ points from which pain radiates.
- Fatigue – a feeling of over whelming tiredness, not relieved by sleep.
- Sleep problems – some people will suffer from insomnia (problems falling asleep or broken sleep), other people will sleep for a good length of time but due to a lack of restorative sleep (deep, stage 4 sleep) will awake unrefreshed.
- Hypersensitivity – including hyperalgesia (extreme sensitivity to pain), allodynia (experiencing pain from light touch) and sensitivity to smells, tastes and brights lights etc
- Other symptoms include muscle stiffness and spasms, headaches, constipation, diarrhoea, feeling too hot or too cold, dizziness, clumsiness, paraesthesia (pins and needles or numbness), mental health symptoms and an inability to think clearly (also known as ‘fibro fog’).
What causes fibromyalgia?
It is not currently completely clear what the exact causes of fibromyalgia are, however there are a number of theories currently being researched more fully:
- Abnormalities in pain transmission – the central nervous system (CNS) transmits pain signals from around the body. It is thought there are alterations in the chemicals used to transmit these signals and therefore higher levels of pain are experienced.
- Chemical imbalances – lower levels of serotonin, noradrenaline and dopamine have been found in the CNS. These are related to regulating mood, appetite and sleep. Alterations in the stress hormone cortisol have also been suggested by researchers. The relationship between these chemical imbalances and the symptoms experienced is not understood.
- Sleep problems – some research suggests that a lack of deep sleep may be a cause of fibromyalgia rather than a symptom.
Why does fibromyalgia occur?
Often fibromyalgia develops after a stressful event such as an accident or injury, death of a loved one or breakdown of a relationship, moving house or giving birth.
For other people, however, there may be no triggering life event.
Fibromyalgia can also be associated with other conditions such as arthritis, lupus or spondylosis.
How do you know if you have fibromyalgia?
First it is important to see your GP.
Since symptoms are similar to other conditions (such as arthritis, lupus and multiple sclerosis) it is a case of eliminating those in order to form the diagnosis of fibromyalgia.
There are no physical changes seen in fibromyalgia so if joints are (for example) red, hot or swollen, another diagnosis is suggested.
There are no changes seen on blood tests or scans so these are used to eliminate other conditions where changes are seen.
A GP with specialist knowledge can give the diagnosis but usually they will refer to a rheumatologist for confirmation.
It is important to recognise that other conditions can co-exist, such as depression, anxiety, lupus, irritable bowel syndrome etc.
Who suffers from fibromyalgia?
Fibromyalgia does not discriminate.
Susan Flannery, four-time Emmy Award-winning The Bold and the Beautiful actress says she takes her condition one day at a time.
Grammy-winning Irish singer song writer Sinead O’Connor retired from music in 2003 due to her condition but has since returned, striving to find enjoyment.
Michael James Hastings was forced into retirement due to his condition but he’s since become a spokesperson and is working on a PhD.
It is thought Florence Nightingale, a pioneer in health during the Victorian period, had the condition triggered by an infection.
If I have fibromyalgia is my life over, or can it be cured?
Your life is not over, there are plenty of ways to manage fibromyalgia but it is important to get the right support. Depending on the specific symptoms, an individual will need input from a variety of specialists including:
- Rheumatologist – a specialist in muscle and joint conditions
- Psychologist – a specialist in how the mind and body work together
- Neurologist – a specialist of the nervous system
- Physiotherapist – a specialist using physical methods of treatment such as heat, massage and exercise
It is common for medication to be the first port of call.
These may include painkillers, anti-depressants, sleeping tablets, muscle relaxants, anti-convulsants and anti-psychotics.
It is important to remember that these can all have side effects.
Other treatments have been shown to be more effective, but they require more motivation, commitment and perseverance.
Graded exercise and hydrotherapy has been shown to reduce pain and fatigue.
It can feel like a catch-22 as the pain and fatigue prevent exercise however it’s proven that doing it will, in the long run, be of benefit.
Pacing is the key to exercise being of benefit.
Psychotherapy, in particular cognitive behaviour therapy (CBT), can help sufferers examine the connections between thoughts, feelings and behaviours to enable the sufferer understand how they can be in control of the condition.
Positivity is a key element in managing the condition.
Relaxation techniques, manipulation or massage can directly target tense areas of the body to bring about relief.
Some people find group or online support useful. Fibromyalgia Action UK is a good place to start.