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Carole doesn’t want to hear “but you don't look sick,” and she doesn’t want pity. Building her dream business while raising strong daughters and a young son is what the 36-year-old American is known for. Driven in her career and dedicated to her loved ones, she felt she had finally found peace after spending years trying to escape an abuser. But in 2019, Carole was involved in a major car accident. She bore the brunt of the oncoming force. The fallout threatened the life she fought to build, her resolve and her health, triggering constant pain. This is Carole's experience of living with Complex Regional Pain Syndrome (CRPS).
Shortly after the car accident, Carole began experiencing severe whiplash, constant neck and back pain, and a burning sensation in her foot – “it felt like it was on fire,” she says.
For many years, she went from doctor to doctor, going through physical therapy, MRIs, and CT scans, in an attempt to find answers. But instead of seeing improvements during this time, her symptoms worsened.
At one point, she was diagnosed with Bertolotti’s Syndrome, a chronic spinal condition. “I had begun falling frequently, struggling to keep my balance, and was unable to walk long distances,” she says. “I was told that without surgery, I would likely be wheelchair-bound within a year.”
Hearing those words was incredibly difficult for Carole to accept, thinking of how it would affect her work and children.
Despite her growing concerns, she decided to remain hopeful. Saying: “When the surgery was scheduled, I was excited. I counted down the days because I truly believed it would give me my life back.”
“Unfortunately, that was not the outcome. Instead of improving, my symptoms became even worse. The pain intensified to the point where I began having thoughts of suicide.”
Returning to the hospital, her doctor confirmed what he had suspected and diagnosed her with CRPS.
“At first, I actually felt relief. For the first time, I had validation that my symptoms were real and not ‘in my head’. I remember crying in the doctor’s office, which is unusual for me because I rarely show my emotions in front of others.”
But as Carole began researching CRPS and realised there was no known cure, that relief morphed into anger.
“I became angry at my body for betraying me. Angry about the life I once had that I could no longer live. Angry, knowing my children would have to watch their mom deteriorate.
“I was angry at the world,” Carole says.
However, after spending some time processing her emotions and the shock of her diagnosis, her attitude shifted.
“One day it felt as if someone flipped a light switch inside me. I realised I had two choices: let CRPS destroy me, or fight for my life. And I chose to fight.”
Never-ending physical and mental pain led to thoughts of ending her life.
“I will admit there was a very dark period where I truly did not want to live anymore. But now I refuse to let this condition take everything from me.”
Reflecting on her current physical limitations becomes painful for Carole, who was once extremely active. Taking part in the activities she used to love is not possible anymore.
“It feels like grieving the death of someone who is still alive — and in this case, that person is myself. But despite that grief, I refuse to give up. I will not allow CRPS to take away everything I have worked so hard to build.”
Carole is still the vice president of sales at her job and also runs a bridal and glam makeup business, which had always been her dream.
But it wasn’t easy for Carole to get to the position she is in now. She fought for years to escape an abusive marriage and to protect her daughters from their abuser, constantly living in fight-or-flight. Eventually, she was able to get her children to safety and their abuser was indicted. “My daughters were later adopted by their incredible stepfather, the loving and supportive man I am now married to,” she says.
“For the first time in years, I could finally breathe. I thought life was finally going to be peaceful and that I could begin healing from the trauma we had endured.
“And then CRPS entered my life.
“But I am still a fighter. And I will continue to fight.”
Only a small handful of people actually know about Carole's CRPS because she doesn’t want pity or to hear phrases like “but you don't look sick”.
“Most people don’t realise the level of pain I live with every single day. I make an effort to always look my best because it helps me feel more like myself. But the truth is that behind that appearance, I am often screaming in pain internally.”
Despite the bold image Carole presents, she rarely leaves the house unless absolutely necessary due to constant pain.
Carloes' husband feels terrible that he can’t do anything to relieve her pain, which makes her feel guilty. “I often think about how he didn’t sign up for this when we got married,” she says.
“I also struggle with feeling like I am not the mom I want to be because I cannot run around with my children or do many of the physical activities we used to enjoy together.”
“What I wish people understood most about CRPS is the daily reality of the pain. The constant burning, the throbbing, the hypersensitivity. And the emotional toll of counting down the hours until the next dose of pain medication just to get through the day,” Carole says.
“Many people don’t realise that most of us don’t want to take pain medication, but sometimes it is the only thing that allows us to function — despite the stigma that often surrounds it.”
Researching and educating herself about CRPS is Carole's main coping mechanism. Understanding what’s happening to her body gives her a sense of control over a situation that often feels uncontrollable.
The 36-year-old has tried every treatment available to her and stays on top of emerging medical and alternative therapies in hopes of finding something to help relieve her pain.
Support groups have been helpful for Carole, and without them, she would feel more isolated. She says: “Living with CRPS can feel incredibly lonely, especially when the people around you cannot fully understand what you are going through.”
“Knowing that others understand this journey has brought me a level of comfort that is difficult to describe. Reading the stories of others who are living with this condition has been incredibly validating. Seeing their encouragement and resilience reminds me that I am not alone. And most importantly, it reminds me that I am not alone.”
Carole encourages new patients to: “Keep fighting.
“Your symptoms are real. Your pain is real. This condition is not in your head. And even on the hardest days, keep pushing forward.”
By sharing your experience, you can raise awareness for this little-known condition that affects so many, helping more people understand the daily reality of life with CRPS.
Your story reassures other patients that they’re not alone.
You can share your story by filling out this survey on the Burning Nights CRPS Support website.
If you're thinking of ending your life and are in crisis, please tell someone.
A Samaritan is available to talk anytime on 116 123.
For those under 25, text SHOUT to 85258.
Worldwide Crisis Support Helplines
Northern Ireland: 0808 808 8000
USA: 988
Canada: 988
Australia: 13 11 14
France: 01 45 39 40 00
Germany: 0800 111 0 111
New Zealand: 1737
Netherlands: 0900 0767
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