If you haven’t heard of fibromyalgia, you’re probably not alone. For a long time, it was a “medical mystery” but now it’s a recognised disorder. And while its cause is not yet understood, it is clear the disease inflicts significant, and often chronic, pain on sufferers.
Fibromyalgia affects up to 5 per cent of the world’s population, mostly women, and tends to develop during middle adulthood.
“It is a condition … that includes widespread pain and tenderness in the body, often accompanied by fatigue, cognitive disturbance and emotional distress,” according to Victoria’s Better Health.
Sufferers usually experience widespread pain for three months or longer as well as abnormal tenderness at particular points around the neck, shoulder, chest, hip, knee and elbow.
Every set of symptoms is unique
People with fibromyalgia will have their “own unique set of symptoms” which can be mild, moderate or severe.
The most common symptoms include:
- Increased sensitivity to pain due to a decreased pain threshold
- Increased responsiveness to sensory stimuli such as heat, cold and light
- Swelling, numbness or tingling
- Extreme fatigue
- Problems with cognition which can lead to memory loss and poor concentration
- Trouble sleeping.
“Symptoms may disappear for extended periods of time, perhaps even years. Other people have pain every day, or experience variations between these two extremes,” Better Health said.
“Living with ongoing pain and fatigue often leads to secondary problems such as anxiety and depression.”
It’s not “all in your head”
Doctor Bernadette Fitzgibbon, a neuroscientist from Monash University, wrote for The Conversation about fibromyalgia’s “long history of stimga”.
She explained sufferers were told “it’s all in your head” for years, until research published in 2011 found the brains of people with the disorder were made up differently.
“Although our understanding has taken a dramatic leap in the last few decades, we can’t shut the book on fibromyalgia’s exact cause or causes,” Dr Fitzgibbon said.
A debilitating illness with no cure
There’s no cure for fibromyalgia or a universal treatment plan, but physicians believe the symptoms can be managed with a combination of medication, exercise, stress management, massage and nutrition.
It all starts with getting an accurate diagnosis, which can be a challenge in itself.
“It can take years to receive a fibromyalgia diagnosis, and some may have been misdiagnosed with one or more other conditions beforehand,” Dr Fitzgibbon said.
“This can be very frustrating for the patient as well as their doctor.”
Fibromyalgia is very difficult to diagnose due to the lack of obvious inflammation or damage, and there’s also no specific test.
The uncertainty can affect a patient’s mental health, which is why it’s important sufferers have a strong support network.
Where to get help?
It’s a good idea to start by visiting your GP if any of these symptoms sound familiar. Rheumatologists can also help but you’ll likely need a referral. Doctors also recommend reaching out to loved ones for support. If GP are closed Queensland patients can call after hours doctor Brisbane for advice and help.
There are also several not-for-profit organisations that offer support services including: