Mum Rowan Lutton from Perthshire has opened up about living with a condition 89% of Scots have never heard of – even though it is more common than MS or Parkinson’s.
Rowan has Axial Spondyloarthritis (axial SpA), a progressive, painful and incurable form of inflammatory arthritis.
She began experiencing symptoms of the condition at just seven years old.
Rowan explains: “At first my parents were assured by doctors I was simply experiencing growing pains but as I entered my teenage years, the excruciating discomfort continued.
“After numerous doctor visits, an orthopaedic specialist decided the pain was being caused by flat feet and I was given insoles to wear as a solution.
“They didn’t help and through my 20s the pain I was experiencing intensified.”
‘I spent 10 years seeing the wrong specialists’
On average, it takes eight years to reach a diagnosis of axial SpA, during which time people are living with painful, unmanaged symptoms, and irreversible damage to the spine may be occurring.
Rowan continues: “It became so excruciating that, at times, I couldn’t get out of bed. I was reliant on crutches.
“I struggle to think of that now. An earlier diagnosis may have prevented all of that.
“I spent 10 years seeing the wrong specialists, searching for answers and being told ‘it was inexplicable pain’.
“Despite the fact I made all the doctors aware my father had axial SpA, I was assured that ‘it was not something young women get’.
“It was so frustrating, and my mood was low.”
Looking on the bright side
Though Rowan’s diagnosis has been a long and winding road, she’s taking it in her stride and finding the positives in each day.
She says: “I turned 40 last year, but some days I feel like I have the body of an 80-year-old! I take medication daily that helps keep my symptoms under control.
“At times, the fatigue is more overwhelming than the pain and stiffness. I have to make sure I stretch and exercise every day as the less I do, the less I become able to do.
“It’s like I seize up. So I get at least 10,000 steps in daily by roaming the hills of highland Perthshire with my dog and youngest child.
“My husband and children are a great support. They know my limitations, but we still have great fun together – I can manage a good bounce on the trampoline on my better days!
“I do get anxious about the future. I worry that my condition might deteriorate and that I won’t be able to do all the things I want to. However, I try to stay positive and focus on the day before me.
“Living with axial SpA is physically and mentally exhausting, but there are great support networks available such as the National Axial Spondyloarthritis Society (NASS).
“I’m just so pleased that I now know how to manage my condition with the right exercise and medication.
“I try to raise awareness about axial SpA whenever I can so that others hopefully don’t have to wait as long as I did for a diagnosis.”
Not just back pain
In the UK, one in 200 people have axial SpA: more than the number of people living with multiple sclerosis (MS) and Parkinson’s disease combined.
Despite this, almost nine out of 10 Scots have never heard of the condition and 80% could not identify symptoms.
The main symptom of axial SpA is back pain: something many of us have been struggling with over the past year as we made the move to working from home.
But the lack of public awareness contributes to an average delay to diagnosis of more than eight years because people don’t realise their persistent back pain could be serious.
According to research by NASS, only four in 10 with symptoms would visit their GP.
A further 9% would prefer to rely on the internet to find out what’s wrong and 35% would ignore it completely.
The longer it takes to get treatment, the more likely people are to live with more serious and irreversible damage. At its worst, the disease can result in spinal fusion.
Treatment options include anti-inflammatory medications, pain relievers, physical therapy and in some cases, surgery.
Symptoms of axial SpA
Getting a diagnosis as early as possible can be the key to alleviating pain. Symptoms include:
- Slow or gradual onset of back pain and stiffness over a period of time
- Early-morning stiffness and pain, wearing off during the day with exercise and movement
- Persistence for more than three months
- Feeling better after exercise and worse after rest
- Weight loss
- Fatigue or tiredness
- Feeling feverish and experiencing night sweats
People who are worried they might have axial SpA can visit actonaxialspa.com and check their symptoms.