How to tell if you have an auto-immune disease
What do you know about these silent illnesses that affect many Aussies?
For the best part of a decade, I have suffered from some degree of joint pain. And as someone who has also always been extremely active, it’s fair to say that this constant hum of discomfort has been not only frustrating, but also debilitating.
Like many chronic pain sufferers however, I have been guilty in the past of dismissing my somewhat puzzling symptoms as normal, or perhaps simply a consequence of ageing. Surely everyone wakes up with back pain after 30? And isn’t it normal for your shoulders or toe joints to flare up after a long run?
Well as it turns out, it’s not. But it took me years of investigation, doctors visits, referrals and advocating for my own health – and sanity – to get a formal diagnosis of something called undifferentiated spondyloarthropathy, an autoimmune disease that can often go undetected because the symptoms are considered to be general, rather than affecting one part of the body.
So while it was comforting to finally have a name to describe the condition responsible for my ongoing joint inflammation and pain – I suspected that since it took me so long to work out the root cause of my issues, I probably wasn’t the only one suffering in silence.
It’s estimated more than a million Australians are affected by autoimmune diseases – a list which includes type 1 diabetes, lupus, rheumatoid arthritis, Hashimoto’s disease, Crohn’s and Psoriasis. What may be even more shocking to learn is that according to research from Monash University, in the Western world, auto-immune conditions are also one of the leading causes of death among women under the age of 65.
Rheumatologist, Professor Paul Bird agrees that it can be a common misconception that auto-immune diseases are confined to an older demographic.
“A large proportion of my patients are under 40,” he says. “Younger patients make up a significant proportion of my practice and an enjoyable part of my job is seeing these people get better as therapy is administered to reduce the inflammation in the joints, turn off the auto-immune disease and return to normal functioning in life.”
While there are also around 80 different types of auto-immune disorders – each ranging in severity – as Bird explains, “The immune system is a structure to protect us from outside invaders such as bacteria and viruses – but for reasons that scientists do not understand, and there is a lot of research still going on to determine the cause – the immune system in sufferers of auto-immune disease begins to attack the normal tissues in the body leading to symptoms of auto-immune disease.”
For many, including myself, it can also be difficult to get a diagnosis.
“In some rheumatological conditions, the average delayed diagnosis can be up to five years as the symptoms can be intermittent, can vary from person to person and can change over time,” Bird says.
“It sometimes takes a lot of detective work to go back through the history of events, and the previous investigations to put the jigsaw puzzle together to make a diagnosis.”
In my experience, this certainly rings true as the long list of seemingly mismatched symptoms I was experiencing felt complex and difficult to articulate. Unlike a typical allergy where I might eat something and then break out in a rash or experience digestive discomfort – there was never a clear trigger for my inflammation or pain. So it wasn’t until I started noticing that certain symptoms were being mirrored on each side of my body that I began to question whether my joint issues weren’t isolated injuries but perhaps there was something deeper at play.
What’s super frustrating too is that aside from their perplexing symptoms, auto-immune disorders can also be triggered or influenced by a number of complex factors including genetics, lifestyle, gender (with more than three quarters of auto-immune sufferers being women), or even infections which can trigger or worsen existing symptoms.
To gain a diagnosis, the first step is to speak to your GP who can take a comprehensive medical history and request the appropriate tests – which may include blood panels, biopsies, Xrays or scans. With those results in hand, you’ll then be more equipped to speak with a specialist who can talk you through your treatment options.
“Achieving a cure is the holy grail for an arthritis specialist such as myself,” says Bird. “What we hope for one day is that we will be able to say to sufferers that we have a cure, and if you take this medicine the symptoms will disappear forever.
“Unfortunately, we are not there yet, but we have made significant advances in treatment over the last 20 years. Although I often have to say to patients they will need long-term therapy, I always make the point my aim is to have them leading a normal life, having a normal life span and being able to interact with their family without any limitation.”
Depending on the condition and its severity will of course dictate the appropriate treatment, but some of the most common treatments include painkillers, anti-inflammatory treatments and steroids, physical therapy and surgery, where required.
The bottom line is, it’s important not to suffer in silence. “It is difficult to estimate how many Australians may be affected with auto-immune disease given that this can be a silent condition that remains undiagnosed for many people,” says Bird.
But with the advancements in research, the good news is that there is now more information and more treatments available than ever before.