Authors Note: A Message of gratitude from Ellie, Creator and Author of A Note of Hope.
"I am happy to share Gabby’s story for the ‘A Note of Hope’ project. Gabby connected with our project through Instagram and completed our standard questionnaire to share her journey with multiple chronic illnesses. Gabby’s most profound struggle has been with Complex Regional Pain Syndrome (CRPS), a relentless condition that drastically altered her life. From an all-star cheerleader to a young woman fighting to walk again, her path has been fraught with pain and setbacks. Despite these challenges, however, Gabby never gave up which led her to a groundbreaking treatment that brought her CRPS into remission. I hope Gabby’s story will encourage others to never lose sight of their dreams, no matter the circumstances!”
Gabby, a resilient teenager from the USA, has navigated a complex and often painful path whilst living with multiple chronic health conditions. Her most significant battle, however, has been against complex regional pain syndrome (CRPS).
Despite dealing with conditions such as eosinophilic esophagitis (EoE)—a condition where
eosinophils, a type of white blood cell, build up in the oesophagus, causing inflammation and leading to difficulty swallowing food impaction and persistent heartburn—postural orthostatic tachycardia syndrome (POTS)—a condition that affects blood flow, characterised by an excessive increase in heart rate when transitioning from lying down to standing up—and gastroparesis—a condition where the stomach muscles do not function properly, causing delayed stomach emptying, leading to nausea, vomiting, bloating, and abdominal pain—it was CRPS that profoundly impacted her life, overshadowing even her other severe health issues.
Before she was unwell, Gabby had been an all-star cheerleader since the age of three. "The cheer gym was practically my second home," she reflects. "And then I developed CRPS, and suddenly the hospital became my second home."
In 2022, Gabby suffered a severe ankle injury that quickly escalated beyond a typical injury. Her leg turned a deep, alarming purple, and her foot locked at a rigid 90-degree angle, making any movement excruciatingly painful. The sensation of even the lightest touch felt like her skin was on fire, a searing pain that was constant and unrelenting.
Gabby relied on crutches to move around, but every step was a struggle against the intense pain and the immobility caused by her locked foot. Despite the severity of her symptoms, however, multiple doctors initially dismissed her pain as exaggerated or psychosomatic, attributing it to anxiety rather than investigating the root cause. This lack of understanding and proper diagnosis left Gabby and her family feeling frustrated and helpless.
It wasn't until December 2022 that Gabby received a diagnosis that made sense of her
debilitating condition: Complex Regional Pain Syndrome (CRPS). CRPS is a chronic pain
condition that typically affects one limb but can also be widespread, usually following an injury. It is believed to be caused by damage to or malfunctioning of the peripheral and central nervous systems. The pain associated with CRPS is often described as burning, stabbing, or throbbing and can be continuous or fluctuate in intensity. This pain is usually much more severe than the original injury suggests.
CRPS can cause the affected limb to change appearance and sensation significantly. The limb may change colour, becoming reddish, blue, or pale, and can also experience temperature fluctuations, feeling unusually hot or cold. Persistent swelling is common, often accompanied by joint stiffness. Additionally, CRPS can severely impact mobility and motor function, leading to symptoms such as weakness, tremors, muscle spasms, and difficulty coordinating movements. Gabby's foot was locked at a 90-degree angle, resulting in substantial mobility challenges. It also explained the intense, burning pain, the dramatic colour changes in her leg, and the severe mobility issues she had been enduring.
Understanding the cause of her symptoms was a crucial first step in Gabby's journey. Still, it also marked the beginning of a long and arduous battle against a condition that would test her resilience and determination.
To find out more about CRPS, click the link below:
Complex Regional Pain Syndrome (CRPS)
Complex Regional Pain Syndrome (CRPS) is a condition where a person experiences persistent severe and debilitating pain. Although most cases of CRPS are triggered by an injury, the resulting pain is much more severe and long-lasting than normal.
Despite much of the earlier damage being irreversible, Gabby managed to walk again with the help of braces and supports after enduring six challenging months on crutches.
However, the pain remained intense, a constant reminder of her ongoing battle with CRPS.
Unfortunately, in August 2023, while attending a summer camp, Gabby attempted to wear sneakers, a seemingly simple act that triggered a severe relapse. The pain intensified, and she once again lost the ability to walk. The relapse was a significant setback, both physically and emotionally. A subsequent hospital visit revealed that the CRPS had further damaged the ligaments holding her shin bones together, making surgery a necessity.
On September 15, 2023, Gabby underwent critical surgery to repair the damaged ligaments and insert screws to stabilise her bones. The surgery successfully alleviated the acute injury pain, but Gabby continued to experience the relentless, burning pain characteristic of CRPS, leaving her feeling lost and scared.
The fear of losing her ability to walk at any moment loomed large, casting a shadow over every step she took. Relearning to walk multiple times was a painful and frustrating ordeal. Being confined to crutches or a wheelchair, watching friends from the sidelines, was heartbreaking. Gabby had to relinquish beloved activities—sports, physical exercise, full-time school attendance, and even something as simple as wearing sneakers.
One of the most challenging aspects of CRPS for Gabby, however, was the loneliness that stemmed from a lack of understanding. People around her, despite their best intentions, could not fathom the extent of her pain. Comparisons to common injuries, like a broken foot, fell painfully short, only highlighting how little others comprehended her suffering. CRPS was a constant, overwhelming agony—her brain sending maximum pain signals to her leg's nerves, making it feel as if her leg was perpetually on fire. Simple acts, like touching her leg or showering, were excruciating, turning everyday routines into torturous tasks.
Despite being told by numerous doctors that she was a lost cause and that she would never get better, Gabby refused to accept this prognosis. Her determination drove her to pursue treatment option after treatment option, never giving up hope. Eventually, she found a doctor who believed he could help her, but it meant leaving her home state of Massachusetts and travelling thousands of miles to Florida. The decision to seek treatment far from home was not easy, but Gabby's determination to reclaim her life alongside her mother's unwavering support propelled them forward.
On January 24th, Gabby had a pivotal evaluation appointment at Johns Hopkins All Children's Hospital. At the end of this thorough assessment, the doctors delivered promising news: they were confident they could put her CRPS into remission. This was a significant turning point in Gabby's journey. After the evaluation, she was admitted to their specialised treatment programme on March 4th.
The innovative treatment Gabby received was developed by Dr. Cucchiaro, one of Gabby's doctors at Johns Hopkins and a leading expert in CRPS. Dr Cucchiaro had spent decades studying CRPS in Italy before his methods became FDA-approved in 2018. His approach challenged traditional rehabilitation methods, which often fell short because the intense pain experienced by CRPS patients hindered their progress. Instead, Dr. Cucchiaro focused on an alternative strategy: targeting the nervous system to stop the pain.
To alleviate Gabby's debilitating leg pain, a catheter was initially inserted into her sciatic nerve to infuse anaesthesia continuously. However, due to the extreme stress her nerves were under, her leg initially rejected the anaesthetic. Undeterred by this setback, the medical team proceeded with a more intensive intervention. They inserted an epidural catheter into her spine, which successfully numbed the pain in her leg. This innovative approach effectively paralysed the pain receptors, creating a window of relief that allowed Gabby's inpatient occupational therapy (OT) and physical therapy (PT) teams to work with her muscles without the hindrance of pain.
This breakthrough enabled Gabby to participate in intensive rehabilitation, during which she relearned how to walk, jump, run, squat, and perform other activities without the excruciating pain that had previously limited her. On March 10th, after making significant strides in her therapy, her pain management team decided to remove the epidural catheter. Remarkably, once the anaesthesia was shut off and the catheter was removed, Gabby's pain vanished.
Dr. Cucchiaro explained that the procedure essentially "resets" the nervous system by interrupting the false pain signals of CRPS. This process gives the brain a break from the constant, pain messages, allowing it to re-learn that routine activity is not harmful. By doing rehab without pain, Gabby's brain was able to understand and accept that movement could occur without suffering, facilitating her return to a state of normalcy before CRPS.
Johns Hopkins All Children's Hospital is unique in offering this specialised treatment in the U.S., currently accepting only 21 patients a year. Gabby is immensely grateful for being one of those patients. She hopes that one day, this groundbreaking treatment will be accessible to everyone living with CRPS.
As of April 2024, when Gabby spoke to 'A Note of Hope' for this interview, she had been in remission for over a month. Her future looks bright, filled with hope and possibilities as she moves forward with renewed strength and optimism.
Gabby's story highlights the profound impact compassionate and personalised care can have on patients with chronic conditions. As part of her treatment, Gabby has worked with her physical therapist for 16 months, and throughout this time, her therapist has never given up on her or viewed her as a lost cause. Living with complex regional pain syndrome (CRPS) makes physical therapy exceptionally difficult, yet these sessions have become a source of joy and happiness in Gabby's journey.
For Gabby, physical therapy involves specialised approaches, such as desensitisation and mirror therapy, tailored to manage the extreme pain and sensitivity associated with CRPS. Despite the physical challenges, her sessions are made bearable and enjoyable thanks to her phenomenal physical therapist. Gabby highlights how refreshing it has been that her therapist sees her as a real person with goals and dreams compared to other medical professionals she has encountered. She listens, advocates for Gabby, and helps her work toward her aspirations, always seeing potential even when Gabby struggles to see it in herself.
Gabby vividly recalls one particularly tough session - Her therapist was performing desensitisation on her leg and ankle using various sharp and dull objects. The pain was intense, but her therapist knew just how to distract her brain. She played categories with Gabby, giving her mind something else to focus on. Playing Taylor Swift on the speaker and filling the room with laughter, her therapist turned a painful experience into a manageable one.
"My physical therapist has been my lifeline," Gabby reflects. "She doesn't just treat my CRPS; she treats me as a whole person, making each session fun and engaging despite the pain."
"I would be nowhere without her," she concludes with gratitude. "She sees me as more than my illness, which has made all the difference in my journey."
This supportive and personal approach has made all the difference for Gabby. Her physical therapist's unwavering dedication and belief in her have not only helped her manage her CRPS but have also given her a sense of hope and joy during tough times.
As Gabby continues to navigate her health challenges, the support and encouragement from her physical therapist remain crucial to her recovery and remission. Now, she can go for runs, attend school regularly, and engage in activities that CRPS had previously restricted.
Gabby has also been able to return to all-star cheer, a passion that has been on hold since her CRPS diagnosis.
"All-star cheer was my biggest motivator to recover," Gabby says. "I was determined to be on the competition stage, tumbling and stunting with my team again!" Thanks to her unwavering determination and resilient spirit, that dream is now possible.
As Gabby reflects on her health journey, she says, "I am so proud of myself for never giving up and never taking 'no' for an answer."
Ultimately, Gabby's story is everything A Note of Hope stands for. Her refusal to accept a life defined by pain and limitations inspires others facing similar struggles. It shows that even when the prognosis seems grim, there is always a possibility for improvement and recovery.
Thank you Gabby for sharing your inspiring story for the 'A Note of Hope' project.
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