An Answer to Chronic Pain Through Community

Sharing Mayo Clinic

An Answer to Chronic Pain Through Community

By
Joel Streed

December 10, 2014

Read time: 7 minutes

Kylee Swensrud doesn’t want to talk about the bad stuff. About how the chronic back pain she’s been living with for the past few years caused emotional distress and drove a wedge between her parents, or the weight it placed on her older sister over concern for her. And she especially doesn’t want to talk about how it rendered a vibrant, outgoing teenager essentially lifeless.

“I don’t want to focus on how negative all of this was,” Kylee, now 19, says. “But I do want people to understand that I literally had no life. It truly was like a living hell. It was just this giant, rolling ball of ick.”

The culprit came suddenly and without warning when Kylee’s lower back gave out one day during ballet. “They thought it was just an injury,” she says. “Nothing was noticeable as a trigger point, so they just told me to rest and do some physical therapy.”

But after that rest and physical therapy, Kylee’s back pain was still there. Local doctors then put her on a pain medications and muscle relaxers that she says did nothing more than require more pills.

After those medications failed to help, Kylee says she then turned to heat and ice treatments. “But I ended up icing so much that I burst my skin and got these huge welts, because I’d just become so dependent on the ice,” she says.

“I really didn’t want to trust anything else or get my hopes up, because I’d already trusted so many other things that hadn’t worked.”

From there, Kylee began seeking relief wherever she thought she might find it. “I tried acupuncture and different homeopathic remedies,” she says. “Those didn’t help either.”

She began visiting chiropractors, sports medicine specialists, orthopedic specialists and anyone else she could think of in hopes of finding just a moment of relief from her pain. “I even had a pelvic exam to see if that could have anything to do with my back pain. I did physical therapy programs, saw a pain counselor, and had like seven MRIs done.” She tried oral steroids and steroid injections, even nerve ablation. None of it helped. “It was so heartbreaking,” she says. “I was in doctor’s appointments constantly.”

Finally, as her family was nearing the end of their rope, Kylee says her mom came home one day and said she’d heard something about the Pain Rehabilitation Center at Mayo Clinic. Though her mother was hopeful, Kylee she’d all but given up hope. “I really didn’t want to trust anything else or get my hopes up, because I’d already trusted so many other things that hadn’t worked,” she says. “ But I finally said, ‘Okay, whatever. I’ll try it.’ It was definitely a last resort.”

After just one week in the program, Kylee says she knew it was the right decision. “Once I got in there, the staff members -- and even the other parents -- created a kind of community inside the program like I’ve never experienced before,” she says. “It was an environment of complete and total acceptance.”

Kylee admits it took her some time for her to feel completely comfortable in her new setting. “I was so nervous to even talk to people, because I didn’t know if I still remembered how to talk to people after having been trapped in doctors’ offices for so long,” she says. “But I went in there, and I was welcomed in right away. I got everyone’s names and phone numbers right away, and they set me up in the group’s text messaging circle and they never even really asked why I was there, or in the program. I think I was formally asked that once. And once they knew why I was there, it was just this complete acceptance.

“That was an amazing experience for me -- to be a part of a community that knows how I feel and knows what I’m going through,” Kylee says. “That in itself was very, very liberating. Being a part of that community was something magical. I don’t know how else to explain it.”

“To be a part of a community that knows how I feel and knows what I’m going through ... that in itself was very, very liberating. Being a part of that community was something magical.”

Even more magical, Kylee says, was that the program was helping when so many other things had not. “The program itself attacks your problems from every angle possible,” she says. “You’re given the tools necessary to actually succeed in life while still dealing with the pain. And once the program leaders gave me those tools for success, it spoke to me and let me know that I am capable of leading a normal life in spite of my back pain. And that’s one of the best things you can know about yourself. Having them teach me that set a fire in my soul that, ‘Yes, I can do this and I am going to do this.’”

Getting to that point, however, wasn’t easy. “The first week of the program was really difficult, because I wasn’t sleeping well, and I was still feeling like my old self,” Kylee says. “But once I got about a week and half in, I started sleeping at night, which was a huge improvement just in itself. Then, my pain level started to go down … I didn’t tell my mom about my progress for the longest time because I didn’t want to jinx it. I didn’t want things to all of a sudden start going badly again.”

Thankfully, that didn’t happen. In fact, Kylee says she kept improving and kept feeling better the deeper into the program she went. “I think mentally, I just finally decided to let it all happen during the second week,” she says. “Emotionally, it was really hard, but I was able to just really start doing well after I let myself go and after I committed myself to being helped.”

Each day began with stretching exercises and educational classes aimed at helping not only her and other young patients better manage and live with their pain, but also their parents. “Your parents are a huge part of your success in the program,” she says. “My parents also needed to realize that I am capable of doing these things, and they needed to re-learn how to treat me as a normal kid.”

Kylee says another key benefit to Mayo’s three-week Pain Rehab program is that it continually cycles in new patients, so there’s a constant mix of “experienced” and “non-experienced” patients to learn from.

And even though she’s been out of the program for a while now, Kylee says she and her mom have had opportunities to come back to Mayo to spend even more quality time with patients in the Pain Rehab program … just in a slightly different capacity. “My mom and I both stay in contact with one of my nurses, Dan Hanson, and we’ve been able to come back to Mayo, I think it’s been five or six times now, to speak to the patients who are currently in the program,” she says. “That’s been another beneficial tool for me, because it’s helped give me a reason and a purpose for my pain by allowing me to be a positive, living example for these other patients who are currently going through what I went through.”

As for Kylee, even though her lower back pain hasn’t completely gone away (and likely never will), she says she and her family are doing better right now than she ever imagined they would. “I’m doing really well right now,” she says. “I can’t tell you how much I’ve accomplished. I used to hate driving, and now I’m driving all the time. I’ve graduated from high school and have been able to do theater and have come to realize that I love acting.” In fact, she was recently accepted into the Disney College Program to work as a character performer at Walt Disney World. “That’s been a dream of mine for years, and I got accepted!” she says. “All of these great things have been happening since I went through the program. I just feel like it’s been a miracle that things have turned around the way that they have.”

And she says the program can offer hope to others living with chronic pain. “This program is the answer if you let it be the answer,” she says. “The will and the desire have been inside of you all along, but it takes the right people and the right program to bring it out of you and to help you feel confident in your own abilities.… It’s hard work, yes. But trust me, it’s worth it.”

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