Life with ankylosing spondylitis - I spent 15 years in debilitating pain

Thirty-seven-year-old Amanda Geard lived with chronic debilitating pain for 15 years before she was finally diagnosed with ankylosing spondylitis (AS).

Amanda Geard, author and writer

AS is a form of inflammatory arthritis, which mainly affects the spine, but can also cause pain and/or swelling in the shoulders, hips, knees, heels, chest/ribs and small joints of the hands and feet.

Amanda’s symptoms started when she was just 19 years old and initially she put her pain it down to a pulled muscle however, it intensified to the point where she felt there was a knife stabbing into her back.

Originally from Tasmania, an island state of Australia, Amanda consulted her GP who prescribed anti-inflammatories, and while they lessened the pain to some degree she wasn’t offered any diagnostic tests into the source of her symptoms. Return visits to her GP simply resulted in repeat prescriptions for anti-inflammatory medication.

A diagnosis - ankylosing spondylitis (AS).

Three years later Amanda suffered a serious flare of her as yet unnamed condition, and was in so much pain that she was forced to attend the Emergency Department of her local hospital where she was treated with a steroid drip.

During her hospital stay Amanda’s blood tests revealed very high levels of inflammatory makers, she also tested positive for HLAB27; a gene associated with ankylosing spondylitis (AS). Amanda also had an MRI scan and x-rays, which revealed degeneration in her joints.

Amanda Geard with dog

“The rheumatologist told me, you’re twenty-two now and you’ve got this degenerative autoimmune condition that will never go away.  I had never heard of ankylosing spondylitis before that point. I thought it sounded like this subspecies of sea cucumber,” Amanda said.

Amanda explained that at that time in Australia if people with AS didn’t show extreme degeneration in their joints, they were not eligible for disease modifying drugs, and she was simply that nothing further could be done.

“At that point the rheumatologist unfortunately opened the door and said off you go, there’s nothing more I can do for you.  I felt really alone. I cried when she told me. It was a real shock.  I was very sporty, really driven and she said that it would degenerate to the point that I would be in a wheelchair, it just was such a shock.”

Despite the devastating diagnosis Amanda was somewhat relieved to finally have a name for her condition.

“On the flipside the beast had been named, and I felt like I had something to fight.  But I wasn’t given any weapons to fight it with,” she said.

With no specific treatment plan or “weapons” to help with her AS, Amanda carried on as best she could self-medicating with anti-inflammatories and researching as much she could about her condition. On learning that physical activity was important she threw herself into exercise and tried to remain as active as possible even forcing herself to exercise through painful flare-ups and bad days.

“But through that fifteen years there was very few times that I had any relief from pain,” she said.

Help is available

Amanda came to live in Ireland a number of years ago and, while visiting her GP for an unrelated matter she told her doctor about her AS and how she had been struggling with debilitating pain for so long. Her GP told her that she shouldn’t have to simply put up with the pain and immediately referred her to a consultant rheumatologist.

Following an assessment by the consultant Amanda was put her on a treatment plan, which worked, and today she said she was “living my best life.”

“I felt as a person not as a number...within a number of weeks beyond anything I could have ever expected my pain levels decreased and decreased.  And that was two years ago.  Since then I have been living my best life.  So it really has been life changing to receive proper treatment for ankylosing spondylitis.  There is help available.”

After 15 years of living with the debilitating pain of AS Amanda finally got her life back, a life that for so long had been severely limited by her condition. 

“I try not to let ankylosing spondylitis hold me back in life.  But I think to a certain extent when every single minute of every day is spent in pain you do let a condition like this define you.”

“Once I had been diagnosed I knew that the condition wasn’t going away... if I just gave up that would be the next sixty years of my life defined by ankylosing spondylitis.... Ankylosing spondylitis is this odd condition that the less mobile you are the worse the pain gets.  And so if you can just decrease your pain just a little and get out and about and get more mobile then this positive feedback loop begins and your pain decreases. When you are exercising it decreases a little more.  And then the brain fog starts to disappear and the fatigue starts to decrease and everything looks a little brighter,” she added.

Coupled with pain and brain fog, AS can result in a range of other symptoms such as inflammation in the bowel and the eyes. Amanda knows this too well having suffered with a painful bout of uveitis in the past.

Amanda Geard with red setter dogs

Keep moving

For Amanda however, life before and after she received proper treatment for AS is worlds apart.  While before treatment the pain began the minute she opened her eyes and it took her an hour or two to get out of bed, now she can get up straight away on waking. She also enjoys regular exercise like running, swimming and yoga all of which help her manage her condition.

Amanda Geard running

She said she would recommend swimming as a great way to exercise for people with AS however, she added that it didn’t matter what type of exercise you did as long as you keep moving.

“Since I’ve been on this treatment plan and felt that I’ve had help with ankylosing spondylitis, it’s always a surprise every morning you wake up and you can get straight out of bed.  You have been lying on your back all night, which is something, I couldn't do for fifteen years.  My pain has decreased to the point that I could go for a run in the morning if I wanted to.  That was completely unheard of for a decade and a half.” 

Finally asked what she would say to herself 15 years ago knowing what she does now, she said she would have been more persistent in asking for help.

“I can say after fifteen years of not managing my condition and now having permanent damage in my spine, that you shouldn't delay, if you are diagnosed with ankylosing spondylitis get to a rheumatologist and get help.  And equally if you have unexplained lower back pain that worsens each day and gets a lot more painful over weeks or months go to your GP, find out what’s wrong, get help.”

Amanda Geard doing yoga