Megan Spitzley recalls her history while curled up on a couch, multiple layers on to hide herself from the cold. The breeze, cold or heat, certain fabrics – they all can cause flare-ups in her limbs. She has three main shirts she cycles through -- made of fabrics that are the least irritating. Her red hair has since been cut short to keep it from brushing the side of her face, where her condition has spread.
The hardest thing, Spitzley said, is what other parents think of her. While they are out with their children as part of pre-school activities, swimming or running in the park, she and her son are absent. It isn't that she wouldn't love to, or that she doesn't care. It's that these physical activities are too painful for her to endure.
“They assume that because you look fine, you are fine,” she said, with hints of tears welling at the bottom of her eyes. “It sucks having an invisible illness.”
This is the life of Spitzley, a 26-year-old Duluth resident who has had to adjust her life to living with Complex Regional Pain Syndrome (CRPS).
The National Institute of Neurological Disorders and Stroke (NINDS) define CRPS as “a chronic pain condition most often affecting one of the limbs... caused by damage to, or malfunction of, the peripheral and central nervous systems.”
Most cases of CRPS, according to experts, are the result of an innocuous sprain, fracture, or tissue damage. In Spitzley's case, it is believed by her doctors to be the result of a small cut on her right thumb that happened in November of 2013.
That November started a grueling three-month search for an answer. The pain had gotten so bad that during those months she barely slept or ate, ultimately losing over 50 lbs. It took three months before a neurologist at Essentia Health in Duluth was finally able to diagnose her.
The pain eventually spread from her right hand to the full arm, then to the left hand and forearm, and currently up to the right side of her face. She describes the sensation as if her skin was the shell of a balloon filled with “hot, wet, gritty cement.”
Despite finally having a diagnosis, the fight is far from over. Spitzley has been attending weekly physical therapy, which serves more to maintain her mobility than to cure it. The pain is still there, and she still averages only two to three hours of sleep a night.
The scenario may seem bleak, but Spitzley has found strength from a very unexpected event.
As far back as 2009, several doctors had told her that she couldn't conceive. But in September of 2009, days before a scheduled hysterectomy, Spitzley learned that she was pregnant.
“Sammy is the best thing that ever happened to me,” Spitzley said. “Without him it would be harder.”
Those motherly instincts show. Her mother’s house, where Spitzley resided until recently, was littered with toys and projects denoting family life. The dining room table was covered in Legos with various creations mixed with random blocks instead of placemats and centerpieces. A mass of wooden racetracks to the side that in the evenings become elaborate tracks through the living room. Megan has learned to be a mother on her terms.
“The hardest part of losing my touch was not being able to hold Sammy's hand,” Spitzley said.
But, as she explained, her son understands what is wrong and has adapted. He knows where not to bump and apologizes when he does so. He even knows to kiss his mother on the left side of the face. Through that, Megan finds courage.
“Without Sammy I wouldn't be here,” Spitzley said.
Spitzley works at Johnson's Bakery where she has been employed for almost 11 years. They've been very supportive throughout, and she has pressed on.
“It was a great concern to see how much she struggled,” Sharon Torrison, Spitzley’s boss at the bakery, said. Despite the small group of employees, many had stepped up to cover shifts in the times Spitzley was unable to work. However, when she could work, she did.
“When the bad flare ups come I still have to be at work and a Mom,” Spitzley said.
Spitzley and her son lived with her mother until early April, when she signed her first lease for her and her son. She now lives in a spacious, two-floor duplex, on her own for the first time in years. The rooms stand bare, aside from the bare minimums of furniture. She has never had her own furniture before.
Finally being on her own, after all she has been through, speaks to her resilience. Spitzley has taken the first steps towards a new chapter of her life.