If you have unexplained lower back pain or morning stiffness, you need to see your GP.  I was in constant pain - now I'm training for a triathlon

What started as a niggle was the beginning of a debilitating illness that made Amanda Geard, now 38, wonder if she would spend the rest of her life in pain. As she looks back, she realizes that the stitches she felt in her pelvis for the first time were the start of a storm in her life. Soon the approaching waves of pain became so strong that she was unable to move.

It would be years before she was diagnosed with the relatively rare form of arthritis known as ankylosing spondylitis (AS) and over a decade before she received the right treatment. Finding the right doctor and creating a treatment plan has changed her life, but she knows that the quality of life can deteriorate if people don’t get the diagnosis and treatment they need.

AS is a chronic autoimmune disease that primarily affects the spinal joints. Persistent pain and stiffness are its hallmarks. Inflammation resulting from the activity of the immune system causes inflammation in sections of the spine, often causing pain, swelling, and stiffness. This can limit mobility and make everyday tasks more difficult.

While there is no cure, various treatments can slow its progression and help people lead active lives. The sooner a person is diagnosed, the sooner their treatment plan can be implemented with a massive impact on their quality of life.

With data from Arthritis Ireland showing an eight year delay in diagnosing the disease, the company is launching a campaign called “Back in Action” to raise awareness of AS. Gráinne O’Leary, CEO of Arthritis Ireland, says that symptoms of AS often begin in younger people, as early as their teens or as young as 20 years old, which contradicts the belief that arthritis is a disease of the elderly.

For Amanda – who runs a geology consultancy with her husband Barry in Sneem, Co. Kerry – it’s been a long way back from the constant pain she’d lived with for years. As an active youth and teenager, she played hockey and was an accomplished runner who grew up in Tasmania. Her job meant traveling the world and it was not uncommon for her to start out in the middle of the Congolese jungle or take wilderness guiding classes in Finland.

But when she was in her early twenties, she found that the gnawing pain she had regularly had was not going away. In fact, it got worse and worse. She thought she had pulled a muscle, but it wasn’t going to get any better.

When she went to her family doctor in Tasmania, she was given a box of anti-inflammatory pills and sent them on their way. Although the pain subsided after taking the anti-inflammatory drugs, there were no answers or explanations as to the cause of her pain. During her 20s the pain came in what she calls flare-ups. Amanda recalls situations where she went for a walk but was immobilized in the pain and had to call someone to pick her up.


Amanda walks with her Irish setters Bertie and Harry near their home in Sneem, Co Kerry

Amanda walks with her Irish setters Bertie and Harry near their home in Sneem, Co Kerry

She says, “It was like a stab and the pain felt like 12 out of 10. I had given up the team sport. I had played hockey, but I remember ending up being wrapped in duct tape from head to toe and on anti-inflammatory drugs. I’ve lost a lot of hope. “Amanda recalls that her darkest days were right before her diagnosis.

“I was relieved that the animal got its name even though I had never heard of it,” she adds. The name “ankylosing spondylitis” seemed to have no place in a young woman’s life. But she has since learned that the onset of the disease comes when many of those affected are in their teens or 20 years of age.

Despite the fact that she had a diagnosis, Amanda said it took her many years to find a family doctor who would listen and refer her to a rheumatologist for treatment. This only happened when she moved to Ireland and was in debilitating pain for 15 years before she finally saw the light at the end of the tunnel.

“I think when you tell your story, people will feel less alone. And you really feel alone. I always scoured the newspaper for stories from people with this condition. If you can find these inspiring stories, it helps, ”says Amanda.

After seeing her family doctor in Kerry, Amanda was put on a waiting list to see a rheumatologist. After waiting for over a year, she was placed in the care of a rheumatologist at Kerry University Hospital.

She says: “We had a long conversation. He looked at me as a person. From this he created a treatment plan. My pain level decreased from the first treatment plan. “

This treatment involved taking a biological drug that Amanda injects herself every few weeks. “I cannot express how different it is now. The condition ruined my life. I was scared of a long plane trip because I wasn’t sure I would get up. I would try to do yoga, but I got stuck. I couldn’t sleep on my back. If I moved I would wake up.

“AS is about always keeping the spine moving and moving as much as possible. But by the time I get up I would be exhausted. You knew you had to go for a walk, and it was exhausting too.

“When you are in constant pain, it is emotionally difficult. I am much easier around and I am much more relaxed. It gave me back my mobility, ”says Amanda of her treatment regimen.

Hand in hand with the treatment, she now includes exercise in her daily routine, regular walking and swimming. She hopes to start training for triathlon next year and has just finished her first novel, which she has been working on continuously for the past year. All of this would have been impossible in the past, she says.

According to Dr. Barry O’Shea, Consultant Rheumatologist at St. James’s Hospital in Dublin, affects approximately 0.1 percent of the population with AS, affecting between 4,000 and 8,000 people. Despite the fact that it is a chronic condition, he says the pain associated with AS is very treatable and manageable. “To make it manageable, it should be possible. Diagnosis is often delayed because it is a rare disease and back pain is a very common occurrence at the family doctor, ”he says.

Dr. O’Shea points out that the characteristics of AS are different from other back pain. “The symptoms that make my ears perk up are stiffness in the morning or when people hate to be quiet,” he says. He recognizes AS patients as the ones pacing up and down the waiting room.

The patient’s medical history, blood tests, x-rays, and in some cases an MRI to examine the bone marrow more closely, are the ways the condition is diagnosed, not just by looking at one thing in isolation.

Treatment is prescribed depending on the degree of the patient’s symptoms, but Dr. O’Shea points out that having a good exercise program is really important for people with this condition. “If you don’t keep your back strong, it increases your chances of a merger,” he says.

While anti-inflammatory drugs can play a role, biological medications have played a crucial role for those with increased pain and stiffness. This is a targeted treatment that works by blocking inflammation, according to Dr. O’Shea, who is also the co-founder and principal investigator of ASRI – the Irish registry for ankylosing spondylitis, a national database of patients with AS from around the world.

Amanda still can’t believe how her life has changed since she was put on her personal treatment plan. She says it took her some time to trust her body again after being in pain for so long. When she wakes up in the morning she is still shocked at how good she is feeling. And after having pushed herself away from people emotionally because of her condition, she now says yes more often.

“I remember when we first moved to such a wonderful church in Ireland, I had many invitations for coffee and things like Couch to 5K. I would have jumped on all of these things, but I remember always making excuses, “says Amanda.

She now accepts these aspects of community life; going to beach yoga with other women and jogging with friends. Her advice to others is not to hesitate if they are in persistent pain.

“I really want to emphasize that people who have this unexplained lower back pain or pain that doesn’t just go away should see their GP. You have to get answers, ”she says.

For more information on the Back in Action campaign, visit arthritisireland.ie