To the average onlooker, there’s no hint that Hayley is in constant pain from a rare disease called Reflex Sympathetic Dystrophy — better known as RSD — and sometimes called Chronic Regional Pain Syndrome — CRPS.
This isn’t your typical “playing through pain” that many players, coaches, writers, and fans talk about — pain that will soon be relieved by rest, medication, massage, ice, whirlpool, or surgery. This is 24/7/365 pain that only varies in extent and intensity.
The National Institute of Neurological Disorders and Strokes describes RSD as “a chronic pain condition that is believed to be the result of dysfunction in the central or peripheral nervous systems. Typical features include dramatic changes in the color and temperature of the skin over the affected limb or body part, accompanied by intense burning pain, skin sensitivity, sweating, and swelling…a chronic, painful, and progressive neurological condition that affects skin, muscles, joints, and bones. The syndrome usually develops in an injured limb, such as a broken leg, or following surgery. However, many cases of RSD involve only a minor injury, such as a sprain…in some cases, no precipitating event can be identified.”
After the game, a 3-0 loss, Hayley and I are sitting in the bleachers, along with her mother, Tasha, and identical twin sister (and teammate), Kayley, who is in a wheelchair as a result of recent ACL surgery. (Hayley and Kayley also have a non-identical triplet brother, Chase, and an older sister, Catlin). Hayley talks matter-of-factly. There are no tears and no smiles as she describes the pain that she’s feeling at that moment.
“It goes all the way from my toes to my (right) hip. When I sit in school my whole back goes numb. The stabbing pain is always worse during the game. If I get hit by the ball then it hurts even worse. If I even touch my leg like that (she touches her thigh with her index finger), it hurts. If I wear pants it feels like carpet burn.”
Van Wert girls soccer coach Rich Nouza struggled to talk, and tears filled his eyes as he described his talented forward.
“Hayley is in pain, but she struggles through it,” said Nouza. “She is as intense and motivated and focused as any player I’ve ever coached. It’s amazing actually — brings a tear to my eye — how hard she works, doesn’t complain, doesn’t quit. What more could you ever ask for?”
Hayley’s playing time is limited by her pain to 8-10 minute stretches. She has missed two games entirely because of the severity of the pain.
In May of 2011 Hayley was climbing a fence when she sprained her right ankle, a seemingly minor injury that triggered a series of unfortunate events that nobody could have anticipated.
Fast forward to February of 2014 when her pain had reached an all time high. She was referred to an orthopedic doctor who found Hayley had osteochondritis dissecans in her ankle, for which she would need an arthroscopy done to remove bone fragments. After one surgery in June her pain had gotten worse yet again, and in September of 2014 she had to have a full ankle arthrotomy done. After a year of physical therapy and the two surgeries, she had gotten no relief from her pain.
In November of 2014, after everything had failed to relieve her pain, the doctors arrived at the difficult and rare RSD diagnosis.
There being no cure in sight and the prospect of remission being very iffy, it then became a matter of pain management.
Once beginning pain management treatment, Hayley says “I took Lyrica, Gabapentin, Vicodin, Percocet, Tramadol, Tylenol 3. I had two lower lumbar sympathetic nerve blocks, two popliteal nerve blocks, one nerve root injection. I had physical therapy twice. Everything I tried only made the pain worse than it was before.”
In Hayley’s case the pain is made worse by physical activity, sitting for a long period of time, standing for a long period of time, wearing long pants, being touched, sleeping with a blanket on, showering, heat, cold, stairs, physical trauma, and keeping the leg bent too long.
During the very physical soccer game against Defiance, she was knocked to the ground twice by violent collisions, and it was many anxious seconds before she was able to stand.
“Going to school isn’t easy because you constantly are in pain that never goes away,” said Hayley. “When I sit down my body goes numb from my toes to my neck. I have trouble concentrating, and I’m tired in class due to sleep problems. It’s very difficult to sit through class and not be able to move around. People ask why I take the elevator, and I tell them it’s because I have a disease in my leg, and they don’t believe me.”
Early on, Hayley wore a Transcutaneous Electrical Nerve Stimulation (TENS) unit — about the size of a man’s wallet — to school. This provided some pain relief, but it gradually lost all of its effectiveness. Her future hope for pain relief now rests with a spinal cord stimulator, a device about the size of a pacemaker that uses an electrical current to interfere with the nerve impulses that make a person feel pain. The Kuhlmans are optimistic about the outcome from this device although it’s by no means a sure thing.
“We’ve researched the spinal cord stimulator since Day 1,” explained Tasha. “Now all we’re waiting on is insurance. Once the insurance is approved, about two weeks out, she’ll have a trial one put in for seven days. Then the permanent one will be surgically inserted. It’s implanted directly into her spine. The lead wires are connected to her nerves. If she does decide to play soccer next year, there’s always gonna be the chance that the lead wire can be pulled out, and they’ll have to go in and fix it. I have faith in her ability to make her own decision on what she will do, and I will always stand behind her. She has a tremendous amount of courage and strength and is an inspiration to us all.”
In the meantime, Hayley pushes on.
“I have a positive attitude because it’s how you approach your disease and how you decide to let it affect you,” she says. “I have a quote that I think about every time I feel like I want to quit and when I’m having a bad day: ‘When something bad happens, you have three choices. You can let it define you, let it destroy you, or you can let it strengthen you.’ I believe that in life you’re given things for a reason, and I believe I was given this disease to test my strength and to show me who is with me for anything that happens in my life. I know that my family is here for me, and so when I’m having a bad day I know I have support from them.
“I want anyone who lives with chronic pain to know that they are not alone,” added Hayley. “We don’t want your sympathy; we just want people to believe us and believe our pain.”