Anne-Marie Raymond will never forget the terrifying moment she became bedridden just after her 40th birthday – unable to walk or sleep due to crippling back pain.
While the 49-year-old mum from Melbourne had experienced the pain since her late twenties, it was always dismissed by doctors and specialists.
“I had this debilitating pain for 12 years, but things came to a head after I had my two girls,” she tells 9Honey Parenting. “It was really frightening. The pain was so bad I couldn’t get out of bed, let alone work or parent.”
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Constant pain had been her unwelcome companion for so long, yet it was often put down to the “symptoms of being a mother” – pushing a pram up a hill and carrying her children.
“On the outside, I looked fine… but it was all just a carefully put-together mask I created to hide the exhaustion, brain fog and unhappiness,” she admits.
Finally, at age 40, Anne-Marie found a GP that really listened to her, took her family history and “joined the dots together”.
AS is a very serious and progressive disease without a cure. It was very hard to hear.
The sales manager was diagnosed with axial spondyloarthritis (AS) – a common type of arthritis.
Unlike the better-known osteoarthritis, AS is an autoimmune disease, causing inflammation that attacks healthy joints and tissues in the spine and pelvis. If ignored, affected joints can deteriorate and potentially fuse, leading to crippling pain and irreversible damage.
“It was of course a relief and validation to finally have a name for my symptoms, but it was also very confronting,” Anne-Marie reveals. “AS is a very serious and progressive disease without a cure. It was very hard to hear.”
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When Anne-Marie turned to ‘Dr Google‘, her fears only intensified.
“There is a lot of really scary information online… about the disease and the associated disability it causes. And at the time I had two young girls I was trying to protect and was running a busy sales team.”
“It used to be known as ‘Bamboo Spine’ because in the worst cases, the bones in the spine fuse together.”
While the pain and stiffness typically occurs in the spine, AS also affects other systems and can trigger conditions like irritable bowel syndrome (in the stomach), psoriasis (of the skin) and uveitis (eye inflammation).
In addition, for most sufferers of AS, the more you rest, the worse the pain gets.
“Days are usually better than the nights, because you’re up and moving so the inflammation doesn’t settle in as much,” shares Ann-Marie. “The nights were always the most difficult for me, I would wake up in pain and find myself walking around the house in tears.”
“I took a lot of over-the-counter pain medication for the excruciating pain.. but AS also causes fatigue, depression and brain fog.”
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Once she had the diagnosis, Ann-Marie was relieved to get access to strong anti-inflammatory medication.
“The medication gave me great relief initially… it was wonderful,” she recalls. “But unfortunately there were some side-effects and its effectiveness started to wane over time, as often happens. It was very hard on my stomach and triggered some terrible digestive issues.”
Less than 12 months later the pain returned, this time accompanied by depression, further digestive issues and the constant fear of progression.
“One day my husband made a passing comment about us being roughly halfway through our lives,” she shares. “In that moment, I realised the thought of living another 40 years only filled me with dread.”
It was at that point, that Anne-Marie started to look for answers about AS. To her shock, she discovered that many people had reduced or even eliminated symptoms by making some key lifestyle changes.
“In spite of specialists telling me it would have zero impact, I found altering my diet to be a complete game changer in how AS affected me,” she admits. “It marked the turning point where I stopped getting worse and started getting better.”
The impact was so profound, that Anne-Marie decided to quit her job and set up her own business as a health coach – to help others battling AS.
While AS affects around one in 200 Australians, up until now it was thought to be a predominantly hidden “male” disease. And most people have never heard of it.
It’s for this reason that young women, especially mums, are being urged not to ignore persistent back pain.
While back pain is common for mums, pain or stiffness that is persistent, particularly in the mornings – is not normal – and Arthritis Australia want mums to be vigilant and ensure it’s investigated.
“Early diagnosis and treatment can make all the difference to long-term outcomes,” Ann-Marie urges. “The average length of time for diagnosis of AS after onset of symptoms for women is just under nine years – that’s a long time to be living with unexplained pain.”
“The more awareness we can raise, the more we can ensure young women aren’t being missed and aren’t at risk of life-long debilitating damage.”
According to Anne-Marie, the mental health impact of AS can not be underestimated. “People with AS often feel really isolated and depressed… so it’s important they get support and can connect to other sufferers. It’s such a lonely world and yet there are so many people struggling with it. “
Please, if you have any back pain at all… get it investigated.
Recent research also shows Aussies living with AS experience significant financial distress due to out-of-pocket expenses and time off work, including a 52 per cent decrease in productivity and an average 2.5 days off work every month.
“One of the biggest triggers of the pain is stress so it’s a vicious cycle when you have AS, because the more you stress about being sick, the worse the inflammation becomes.”
“The biggest thing that comes up over and over is people invalidating their own pain… and putting up with it, thinking it must be normal.”
Arthritis Australia has just launched a new website – MyAS www.myas.org.au – to help people understand the condition, how to manage it, and where to access support.
For Anne-Marie, stretching every morning with a specific form of yoga combined with being careful with her stress management and diet, alongside medication as needed, has been the key to living well with AS.
Now eight years on from diagnosis, her health is in better shape than she “ever could have hoped”.
“I live a productive, active life, with the pain of AS now in the background rather than the forefront of my life. Please, if you have any back pain at all… get it investigated.”
For more help and support for AS, go to MyAS www.myas.org.au
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