From Pain to Purpose (CRPS The Journey)

Living with CRPS (Complex Regional Pain Syndrome): Awareness, Support, and Hope

By Beth Stillitano

There are moments in life that divide everything into before and after.

For me, that moment came in 1996, when I was injured at work and my life changed in ways I never could have imagined. I was a teacher, doing the work I had always dreamed of doing. Teaching was not just my profession; it was an integral part of my identity. Then, without warning, I received a diagnosis that would alter the course of my life: Complex Regional Pain Syndrome (CRPS).

CRPS is a condition that many people have never heard of and is referred to as the most painful disorder known to medicine. It is a condition that affects far more than the body. CRPS is relentless, misunderstood, and isolating. It can disrupt careers, relationships, financial stability, mental health, and a person’s sense of identity.

One of the cruelest parts of living with CRPS is that much of the suffering is invisible. People may not see the pain, but that does not make it any less real. When a condition is misunderstood, those living with it often find themselves fighting two battles at once: the illness itself and the struggle to be believed.

I know that battle personally.

There were moments when the weight of it all felt unbearable. I mourned the life I once had while trying to adjust to one I never wanted. I missed the freedom I had known, the career I loved, and the ease with which I had once moved through life. Like so many people living with chronic illness, I had to learn how to cope not just with pain, but also with extreme loss.

In the midst of grief and pain, I was faced with a choice: I could allow the pain to define me, or I could try to create purpose from it.

That purpose became Fight the Flame®, the nonprofit organization I founded to support others affected by this devastating disease through awareness, education, support, and funding research.

I wanted people with CRPS to know they were not alone. I wanted families and caregivers to feel seen. I wanted the medical community, businesses, and the public to better understand the reality of this disease and why awareness matters so deeply.

One of the most meaningful parts of this journey is that the spark for this mission began with love. When my son Landon was just 12 years old, he organized the first Fight the Flame 5K and 1K Family Roll & Stroll to help make a difference. What started as a child’s desire to help his mother has evolved into an annual event that brings together patients, families, caregivers, supporters, and advocates from across the country.

Since then, Fight the Flame has grown into a source of connection and purpose for those impacted by CRPS. Through support groups, awareness efforts, educational programming, events, and funding research, we work to shine a light on a condition that is too often overlooked.

But this work is about more than programs and events. It is about people.

• It is about the newly diagnosed patient who is scared and searching for answers.
• It is about the person who has spent years suffering, feeling dismissed or disbelieved.
• It is about the caregiver trying to hold a family together while watching someone they love hurt.
• It is about helping every person affected by CRPS feel seen, understood, and less alone; reminding them that their pain matters, their story matters, and they matter.

That is why sharing stories matters. Stories create connections in ways statistics alone never can. Stories make the invisible visible. When we speak about what it means to live with CRPS, we create space for compassion, awareness, and action.

I never would have chosen this path; no one chooses CRPS. But I have chosen what to do with it. I have chosen to fight. I choose to advocate, to speak up for those who are too exhausted, too discouraged, or too dismissed to speak for themselves. I have chosen to raise awareness and educate. I choose to build hope, ensuring that people living with CRPS know they are not alone.

Living with CRPS has taken much from me and changed the course of my life, but it did not get the final word.

Purpose did.

About the Author

Beth Stillitano is the founder and Executive Director of Fight the Flame®, a nonprofit dedicated to raising awareness, providing support, promoting education, and funding research for Complex Regional Pain Syndrome (CRPS). Beth is a wife and mother of two, Alana and Landon. She lives in Charlotte, North Carolina with her husband, Steve, and their two cats, Snickers and Luna. Through advocacy, community outreach, and storytelling, she works to ensure that those affected by CRPS feel seen, heard, and less alone.

---

FAQ: Complex Regional Pain Syndrome (CRPS)

What is CRPS?

Complex Regional Pain Syndrome (CRPS) is a chronic pain condition that typically affects a limb after an injury. It is known for causing severe, persistent pain that is often disproportionate to the original injury.

What causes CRPS?

CRPS usually develops after trauma such as a workplace injury, surgery, or accident. The exact cause is not fully understood, but it involves abnormal responses of the nervous system.

What are the symptoms of CRPS?

Common symptoms include:

• Intense, burning pain
• Swelling and inflammation
• Changes in skin color or temperature
• Sensitivity to touch
• Limited mobility

Is CRPS curable?

There is currently no cure for CRPS. However, early diagnosis and treatment can help manage symptoms and improve quality of life.

Why is CRPS called the “most painful condition”?

CRPS is often referred to this way due to the severity and persistence of pain, which can be extreme and debilitating, even without visible signs.

How can people support someone with CRPS?

Support can include:

• Listening and validating their experience
• Educating yourself about the condition
• Offering practical help with daily tasks
• Encouraging medical care and emotional support

Why is CRPS awareness important?

Because CRPS is rare and often misunderstood, awareness helps improve diagnosis, treatment, research funding, and compassion for those living with the condition. For more information http://fighttheflame.org/