Contributor: Michael Stanton-Hicks, MD, Department of Pain Management
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Twenty-year-old Jordan Keen has battled complex regional pain syndrome (CRPS) for almost half her life. But now her once-disabling condition is so well controlled that she ran the Chicago Marathon last year — in under 6 hours 30 minutes, no less. Jordan offered to share her story and advice for others facing CRPS or other chronic pain conditions.
Ski injury turns to severe pain
Jordan’s struggle with CRPS began with an injury to her right knee from snow skiing when she was 12. Within a day, her knee soreness turned to a severe throbbing, shooting pain that extended to her foot. Her lower right leg swelled and turned red and purple. Its skin temperature was uneven, turning from hot to cold. The pain was so great that the formerly athletic Jordan was constantly dependent on crutches.
These severe symptoms did not let up for many months as she was treated in her native Michigan with various medications and underwent arthroscopic knee surgery, none of which helped.
Relief from rehab and a stimulator
It wasn’t until Jordan was referred to Cleveland Clinic more than a year after her skiing accident that CRPS was identified as the culprit behind her pain. “The first physician I saw at Cleveland Clinic was an orthopaedic surgeon,”Jordan says. “Within 30 seconds, he said, ‘I know what this is — CRPS — and I have just the doctor for you.’”
That doctor was Dr. Stanton-Hicks, MD, of Cleveland Clinic’s Department of Pain Management. He soon referred Jordan to Cleveland Clinic’s Chronic Pain Rehabilitation Program, where she underwent three weeks of physical and occupational therapy. While there she learned psychological techniques to manage and cope with her pain so she could become more active again, which is essential to living with CRPS.
This helped her up to a point, but more complete relief came when Dr. Stanton-Hicks attached a temporary spinal cord stimulator to her back. The stimulator delivered a controllable electrical current to her spine to modulate the pain from her leg. The pain relief was “instantaneous and incredible,”Jordan says. “I went from a constant stabbing and ripping feeling to a Jacuzzi-like sensation. It made movement so free and easy.”
That ease of movement enabled her to get more out of the rehab program. She used the temporary spinal cord stimulator for about eight weeks to get off her crutches, get active again, and manage her pain with medication and skills learned in the rehab program.
After the stimulator was removed,Jordan found that staying active, even when it hurt, was key to keeping her pain manageable. “The pain of CRPS isn’t damaging to the body; it’s like a fire alarm that goes off without there being an actual fire,” she says. “For me, making a daily commitment to movement got me back to living the life I like — being active.”
CRPS throws a curveball
Jordan thrived for eight months until she developed an abdominal infection from food poisoning. It sent her to the hospital, and she developed excruciating pain in the abdomen that remained even after the infection cleared. The pain got worse over the next six months, cropping up in one of her arms and then in her legs, again with swelling and skin discoloration.
Jordan returned to Dr. Stanton-Hicks, who saw this new episode as being linked to her CRPS. “While CRPS first appears in one spot where an injury occurs — usually an arm or a leg — the whole nervous system is affected,” he explains. “So a person with CRPS reacts to new injuries differently than a person without CRPS would.”
Dr. Stanton-Hicks suspected a permanent spinal cord stimulator would be the ultimate solution for Jordan’s new pain, but Jordan had to wait more than a year before this costly therapy was approved by her health insurer. In the meantime, she attended Cleveland Clinic’s three-week Pediatric Pain Rehabilitation Program, where she was educated about her pain using methods tailored to children and adolescents.
“We would do therapy in a classroom setting where we’d stand and do homework or learn skills for studying and doing schoolwork with chronic pain,”Jordan explains. “It taught me new, more specific ways to manage my pain.”
Return to near normal
That helped Jordan make it to the point when her insurer approved the permanent spinal cord stimulator, which “took away the pain the minute I turned it on,” she says. “It was amazing.”
Jordan was able to gradually reduce the amount and the level at which she used the stimulator so that she stopped needing it entirely by the fall of 2010, not quite two years after it was implanted. Now she views the stimulator as “just an insurance policy,” explaining that she is off all medications, no longer experiences pain on an everyday basis and is able to manage her pain quickly using the techniques she learned in the rehab programs, especially yoga.
Dr. Stanton-Hicks notes that the large majority of patients — and especially adolescents — with CRPS don’t need a stimulator to keep their pain at a manageable level.
Words of advice
Jordan’s advice to others with CRPS? “Keep moving, no matter what,” she says. “The small choices you make every day — to take a walk instead of watching TV, or to get up 15 minutes early to start your day with relaxation techniques — will add up to make the difference between thriving versus just surviving with chronic pain.”
Her final advice: “Keep doing what you love.” When Dr. Stanton-Hicks recommended that Jordan avoid contact sports (including her favorite, basketball) to steer clear of re-injury, she took up netball, a non-contact sport similar to basketball, and soon became a champion. She will be traveling to South Africa this year to compete in the World University Games as one of the captains of Team USA in netball.
“Don’t let chronic pain keep you a victim,” she says. “When you do what you love, you can thrive with chronic pain.”
“The pain of CRPS isn’t damaging to the body; it’s like a fire alarm that goes off without there being an actual fire.” — Jordan Keen, who has complex regional pain syndrome (CRPS)
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