As a kid Georgia remembers always being labelled the “soft kid” because she would injure herself doing the things she loved most, such as dance and netball. Little did Georgia and her family know, she was dealing with something far more complex, a Function Neurological Disorder (FND) and Complex Regional Pain Syndrome (CRPS), a diagnosis that would alter her life.
In 2021 when Georgia was 14 years old, she sprained her ankle. Not long after that she experienced another ankle injury, this time a series of muscle tears, strains, sprains, and a fracture.
After a long recovery in a cast, Georgia was still in agony when it was expected her ankle would be better. Her physio did further investigation and after examining her medical history noticed an alarming amount of extremely painful, yet objectively minor injuries. This brought to light a suspicion that Georgia might have CRPS.
In August 2021 Georgia was referred to a NSW pain specialist. Throughout this referral a series of tests were done to observe her pain reactions. Something as light as brushing a cotton ball against the skin of her ankle would cause Georgia to burst into tears.
“It was after the lengthy testing process that I was diagnosed with CRPS,” Georgia said.
“Although it was quite a long process, having a diagnosis to explain my low pain tolerance after so many years of questioning myself was unexpectedly comforting,” she said.
CPRS is a form of chronic pain with symptoms that vary and change over time and differ from person to person.
After the initial diagnosis of CRPS, Georgia’s symptoms started to significantly worsen. Georgia’s pain was increasing and she was experiencing severe brain fog, exhaustion, dizziness and an irregular heart rate.
With the decline in Georgia’s health intensifying, Georgia and her family were informed by a pain team in another state that there was nothing further they could do to help. Intent on doing all they could to help Georgia, her family sought to find a more extreme and “abnormal’ treatment approach. As a result, Georgia and her Mum, Carla travelled to America in late 2022.
“This process was brutal, it was five to seven treatments every day including many alternative and intense approaches,” Georgia said.
“Unfortunately, the process made my health rapidly decline and the environment didn’t work for me despite working for countless others.”
As soon as Georgia and her Mum landed in Brisbane, they went straight to the Queensland Children’s Hospital, because Georgia had not eaten for almost two weeks and could not drink liquids orally.
Georgia was admitted to Queensland Children’s Hospital where she was cared for over a two-month period. During her stay she had to start using a feeding tube as the chronic pain had started to affect her internal organs and digestive system.
This lengthy admission is when Georgia and her family met the Acute Pain Service and Consultation Liaison teams that work closely with the Queensland Interdisciplinary Paediatric Persistent Pain Service (QIPPPS) to discuss and consider an appropriate treatment plan for Georgia. QIPPPS is an interdisciplinary service that considers what effective treatment for chronic pain looks like for each individual patient.
Being in a vulnerable position when first presenting to QCH Georgia was initially met with the acute teams to work on getting her vitals under control. The team then coordinated the smooth transition from acute to chronic services. Because of this approach, when Georgia was stable she was able to leave hospital to start her journey with QIPPPS and begin her chronic pain intervention and rehabilitation via telehealth.
The success of the QIPPPS was demonstrated when Georgia and her family realised they needed a bare bones team that would give them a less is more approach to her treatment.
“QIPPPS have been by far the most informative and supportive treatment team we have encountered in this chronic pain journey so far,” Georgia’s mum, Carla said.
“They have listened, educated, validated and guided,”
“They get it when very few people do,” she said.
“CRPS is not well understood by many medical professionals, so to have a team around Georgia that genuinely understands her has been invaluable,” she said.
Georgia and her parents had sessions with the physio and psychologist to help make sense of her pain through pain science, so that they could start to understand how to retrain Georgia’s nervous system for recovery. Georgia also had allied health appointments with the music therapist and physio. Part of this treatment was about learning to tune into the body and mind and calm the nervous system.
“The QIPPPS gave us instant trust and validation which was an instant win and when we started to see improvements,” Carla said.
After two years with QIPPPS, and a vast improvement, Georgia has begun her transition into adult care. She continues to be supported by a refined team who work closely with her under the guidance of QIPPPS. Georgia’s ongoing care includes an exceptional physiotherapist and experienced psychologist who are key to her progress forward.
Georgia continues to need assistance and medication for some activities, uses a wheelchair for mobility, has sensitivities to light and specific sound frequencies and has an allodynia on her left shoulder and left foot (a disorder in which pain is caused by a stimulus that does not normally inflict pain).
Despite these challenges, living with CRPS doesn’t keep Georgia down. She enjoys crocheting and owns a small candle business that she runs with her sisters which has sparked her interest into marketing and business. Georgia also enjoys reading and hanging out with her pets when her body doesn’t allow her to do much else.
“Diving into my passions provides a form of escapism when I just want a break,” Georgia said.
Georgia and her family said they will continually assess and review options available for Georgia’s condition.
“Our family have learnt to trust our gut when things don't feel right and to advocate and make sure Georgia feels heard,” Carla said.
“We've learnt that changes in the weather can increase pain, a slight breeze can cause a dysfunctional nervous system to heighten and most importantly we've learnt that a simple hug is something we will never take for granted again.”
“There is absolutely light at the end of the tunnel and every day that passes is one day closer to this. Hope is as necessary as surrounding yourself with the right people. Our Georgia girl is our Superhero and teaches us everything that embodies resilience, maturity, flexibility, and perspective.”