Nicole was a happy, bubbly child who loved playing kickball at recess and spending time with friends. Although she was a bit clumsy, she loved softball and music. Her life was carefree and simple, as it should be for any little kid. But around the time she turned 8, she started getting severe migraines. “My migraines were the first debilitating pain I had ever experienced,” she says. “I remember curling into a fetal position with my head on the ground, sometimes pounding my forehead into the ground and screaming for hours.” By the time she turned 13, Nicole had been diagnosed with Complex Regional Pain Syndrome, or CRPS, a chronic pain condition caused by damage to the peripheral and central nervous systems.
When Nicole was 10, she was play-wrestling with her dad and karate chopped him to the shin with her right foot. “As soon as my foot made contact, I grabbed my leg,” she remembers. “The pain seemed to course all the way up my leg from the bottom of my foot.” However, her dad also ended up with a bruise on his shin, so she figured she had just landed an excellent, and hard, karate chop. She limped to her room and iced her foot. But the next morning, Nicole was still in extreme pain and was not able to bear weight on her right leg. A doctor at local urgent care found a hairline fracture on her growth plate and put her in a boot with crutches. He predicted she would be back to her old self in a few weeks.
Once the healing period was over, Nicole attempted to go back to her old life, but every few weeks, she would experience excruciating pain in her leg and be unable to stand on her leg. She went through numerous cycles of boots, casts, and crutches before finally seeing a doctor who diagnosed her with CRPS. By the time Nicole graduated from high school, Nicole had been on crutches more than 50 times and even attended school dances on crutches. “It was normal,” she recalls. “Pain was my normal.”
Navigating life with a chronic illness was severe. She was bullied by both her peers and her teachers, neither of whom could understand why she was always hurt. PE classes were especially tricky. After Nicole had sat out most of her PE classes, she was placed into an adaptive class where she was able to incorporate her physical therapy into daily exercises she could complete.
Despite her daily pain, Nicole still maintained her passion for athletics. She made the softball team and excelled at the sport. However, she noticed that her pain often flared during the softball season, causing her to miss practice and games. Nicole decided to stop playing softball and instead began swimming, a low-impact sport in which she excelled.
Finding expert treatment for CRPS also proved to be a challenge for Nicole. She saw multiple doctors before ending up at a pediatric pain program through UCLA. There she began a treatment regimen that integrated physical therapy, psychology, prescription medication, acupuncture biofeedback, and more. After two years, Nicole felt better than she had in years, and her doctors believed she was in remission. However, on her 24th birthday, she fell severely, spraining her left ankle and breaking her left foot. The pain was intense, and her doctor confirmed that her CRPS had spread to her left leg. After two more falls during her recovery, the CRPS spread even more.
As the pain spread, Nicole’s doctors tried many treatments to try to break the cycle of pain in which she was trapped. She tried antidepressants to sedate her nervous system, anti-seizure medications to block her neural pathways, nerve blocks to prevent the pain signals from reaching her brain, and many more. She even endured Transcranial Magnetic Stimulation, a painful procedure in which a magnetic field stimulates the misfiring nerve cells. It soon became apparent that she needed relief from the pain resulting from each treatment failure. Her doctors had given her Ativan to stop her full-body spasms; however, it was not effective and required high doses. She tried muscle relaxers and found that they were also not sufficient. Her doctors finally prescribed her opiates as a last resort. “I knew that opiates were often not helpful in CRPS, and often not recommended,” Nicole says. “I started them with resistance but also hope.” However, the opiates did not provide the relief she hoped for.
Eventually, she developed gastroparesis, leaving her unable to digest food and causing exhaustion, dehydration, and malnutrition. Opiates are known to slow down digestion, so Nicole struggled to get help as her gastroparesis developed. Nicole now uses a feeding tube to direct nutrition directly to her intestine. “It’s unclear whether the high doses of opiates I was on further impacted my digestive system,” Nicole says. “Either way, it was only once I started using marijuana methodically that I was able to wean myself off the opiates without additional side effects.”
Nicole now uses marijuana every day to ebb and flow with the pain. She finds that smoking is not as effective as dabbing, and she can put tinctures directly into her feeding tube, which brings relief quickly. She prefers concentrates and dabbing, but also uses topicals frequently.
Incredibly frustrating to Nicole is the resistance to marijuana she faces from her healthcare team. “My neurologist was fairly open” to her using marijuana, says Nicole. “He was open to anything that might work for me as long as I was under the supervision of a doctor.” However, every other doctor Nicole has seen has resisted it. She believes the dearth of scientific research and data on medical marijuana contributes to the resistance. However, using marijuana enabled her to reduce or stop using very high doses of opiates, Ativan, and muscle relaxers. “I found it was really defeating,” when she comes across doctors willing to give her very high doses of pain medications rather than accepting her use of marijuana.
Nicole’s CRPS is unpredictable, and much of her life is spent adapting to an ever-changing body and striving to move forward with the best attitude possible. “Some days are absolutely horrendous,” she says, “but I am so thankful for my health, for my ability to control my movement, for my voice, and for the days I am out of bed.” She credits getting her feeding tube with restoring her body’s nutrition, which has allowed her to return to physical therapy and outings. She does yoga daily and continues to reduce her prescription medication intake. “None of this would be possible without medical marijuana.”