After years of struggling with the pain of rheumatoid arthritis, lupus, and fibromyalgia, Becky Tomlinson learned how to manage her pain without opioids and regain control of her life thanks to an integrative pain management program.
Since childhood, Becky Tomlinson suffered bouts of pain and stiffness in her hands. The episodes came and went without diagnosis or treatments. For 47 of her 53 years, Becky rode them out and kept active.
Six years ago, Becky’s episodes of stiffness and soreness rapidly became unbearable. Her hands and wrists ached constantly. Typing on the computer, using the copier, and performing the other daily tasks of her job as a supervising clerk for the City of Chicago made her fingers and knuckles swell up. “By the end of the day, my hands were so stiff, swollen, and painful that I could barely move my fingers,” she says.
The pain, once fairly localized, spread, and intensified. She had stabbing pain in her feet. Her knees ached. She had spasms, numbness, and tingling in her arms and legs. Sometimes her shoulder and elbow twitched uncontrollably and a crushing fatigue overwhelmed her. At the office, she struggled to get her work done. Everyday tasks at home turned into insurmountable obstacles. Some days the pain consumed her. “It was agonizing,” she says.
After one especially difficult day where her hand seized up and left her sobbing, Becky finally went to see her primary care doctor at Chicago’s Northwestern Memorial Hospital. “She took one look at my very swollen and very tender hands and immediately referred me to a rheumatologist at the hospital,” Becky says.
Testing Leds to a Diagnosis
After a battery of tests, Becky learned that she had rheumatoid arthritis (RA), systemic lupus erythematosus (lupus), and fibromyalgia. “While her primary presentation was RA, she had so many different things going on,” explains Deanna Martin, MMs, PA-C, physician assistant in rheumatology at Northwestern Medical, who treated Becky for close to three years.
How did her conditions escape detection for so long? “Autoimmune diseases don't follow rules very well,” Ms. Martin says. “Sometimes [as in Becky’s case], these autoimmune diseases can progress at a glacial speed and when the symptoms are vague and intermittent, diagnosis in a primary care setting can be difficult, Ms. Martin says. Moreover, Becky’s autoimmune disease “straddles the line between lupus and RA. Some people call it rupus,” Ms. Martin adds. “It’s relatively common in rheumatology circles though not as well-known outside the specialty.”
A diagnosis of fibromyalgia is also “very common in patients who have a chronic autoimmune disease,” Ms. Martin notes. Why this happens isn’t fully understood. “The best theory we have about fibromyalgia is that something about the nature of chronic pain rewires the way the brain processes pain,” she explains.
Finding the Right Treatment
Over the next three years, Becky started and stopped a list of medications to treat her autoimmune disease and minimize the damage to her joints. A first-line treatment for RA and lupus, she was started on methotrexate. When that stopped working, she cycled through an array of “disease modifying” biologics including Actemra (tocilizumab), Humira (adalimumab), Enbrel (etanercept) and Xeljanz (tofacitinib) in addition to azathioprine, an immunomodulatory used to treat RA and lupus.
Each of the drugs worked for a time for a time—ranging from months to a year—but then gradually stopped working. “I think my body just got used to them,” Becky says. According to Ms. Martin, “The body can produce antibodies against these medications and stop them from working.”
Along with the drugs meant to control the progression and activity of her RA, Becky’s medicine cabinet filled up with medications to manage her pain and other symptoms., She was prescribed Flexeril (cyclobensapine) for muscle spasms, and Neurontin (gabapentin) and Elavil (amitriptyline) for nerve pain. For joint pain, she relied on lidocaine patches and topical Diclomax gel (diclofenac) and indomethacin and meloxicam (both prescription nonsteroidal anti-inflammatory drugs) for inflammation. She rotated through pain medications, starting with the weaker opioids acetaminophen with codeine (Tylenol-codeine) then acetaminophen and hydrocodone (Norco) and finally tramadol (Ryzolt, Ultram).
Impact on Her Life
Once her disease progressed, her life changed dramatically. “I couldn’t do the things I used to,” she says. For the woman who had two gym memberships and twice finished a 10-mile race, “a flight of stairs might as was well have been Mt. Everest,” she says. Her jewelry stayed in boxes because her wrists and fingers were so inflamed it was impossible to put it on. She stopped going to the gym and driving was too painful to continue. The ever-present joint and nerve pain tormented her day and night. As sleep eluded her, her exhaustion and irritability increased. “I became so agitated and short-tempered,” she says. Accomplishing everyday tasks like shopping, laundry, and caring for her elderly parents—both with their own medical problems—was daunting. Her stress level climbed along with her blood pressure.
Making plans became a chore. “I never knew how I’d feel from day to day,” she explains. Friends fell away and eventually “some just stopped keeping in touch,” Becky says. “Some took offense when I had to cancel plans because of my symptoms.That loss of friendship made a big impact in my life,” she says. “When you have an illness that isn’t visible, people don’t realize that just because you look OK doesn’t mean you are OK.”
Even her husband of 28 years wasn’t as supportive as she hoped. “He’d tell me that I looked OK. He didn’t appreciate how much I was struggling,” she says. “He was used to my being independent and feisty. All I could think of was that I’d never be the way I was before. I mean I couldn’t even cut a steak,” she says.
Fibromyalgia Takes Over
While her RA and lupus symptoms would wax and wane, fibromyalgia (characterized by widespread musculoskeletal pain and tenderness) was her constant, unwanted companion. As her pain intensified, the depression she’d had since childhood deepened despite her antidepressant medication. She worried about growing dependent on pain medications. “My purse was half-full of pain pills,” she says. At one point, she was downing six or more Norco a day and taking up to double her daily dose of gabapentin. “I was taking as many pills as I needed to do my job and get through the day,” she says. “I just wanted to feel close to normal,” she adds.
But she didn’t feel anywhere near normal. Not physically or psychologically. The opioid affected her stomach making her feel constipated and bloated. The easy-going, warm, and patient woman became easily frustrated, anxious, and withdrawn.
Taking Control of Her Pain
During appointments with Ms. Martin, the subject of her pain medication came up often.
“When I first started working with her a big focus was encouraging her to reduce and get her off as many pain pills as possible,” Ms. Martin says. They had many conversations about opioid alternatives with fewer side-effects and about what amount of pain is tolerable. It took time but eventually Becky agreed that she needed to find a better way to manage her pain. What finally pushed her into seeking help was “watching a friend’s life derail due to opioid addiction,” she says.
Ms. Martin referred her to the Shirley Ryan AbilityLab Pain Management Program. The program takes a multidisciplinary team approach to help patients learn how to manage chronic pain. A team of pain medicine specialists, including physicians, nurses, psychologists, occupational, vocational, and physical and relaxations therapists, work together to improve the “patient’s physical and emotional well-being,” says Randy Calisoff, MD, attending physician and Interventional Pain Management Specialist at the Pain Management Program.
In the program, patients learn different strategies—sleep modification, pacing strategies, proper use of body mechanics, posture, and relaxation techniques—all designed to enhance function while minimizing the use of medications and invasive procedures. “We arm them with tools that they can use after they finish the program,” Dr. Calisoff says.
On April 14, 2015, about three years after her diagnosis, Becky arrived at Shirley Ryan to meet with Dr. Calisoff. After examining her and taking her history, Dr. Calisoff asked Becky what she hoped to achieve in the program. She told him she wanted to get her life back and to improve her function. What she didn’t tell him was the extent of her dependence on tramadol and Neurontin.
“When you have an illness that isn’t visible, people don’t realize that just because you look OK doesn’t mean you are OK.” —Becky Tomlinson
After meeting with Clinical Psychologist Patricia Cole, PhD, the recommendation was that Becky enroll in the eight-week program. For four weeks, she would spend weekdays from 8AM to 4 PM at Shirley Ryan followed by four weeks at home practicing the tools she’d learned. This is followed by a re-evaluation, reassessment, and tweaking of her pain management strategies. After the eight weeks, she would return for regular check-ups.
Becky’s initial reaction was “to book” out of there, she says. She didn’t. Once she made up her mind, she was all in. “I realized I had to have this; I had to do something for myself,” she says. That something included giving up the year’s vacation and sick days to participate in the program.
Back to School
On May 4, 2015, Becky began her re-education. “There was so much going on,” she says, “It was like being back in school.” On her “class” schedule: mindfulness, biofeedback, occupational and physical therapy, individual and group therapy, aqua therapy, art and music therapy, and more. “I was constantly on the go,” she says. Although she wasn’t accustomed to the pace and so much activity, she found herself enjoying it. “It was fun,” she says.
In group therapy, she was surrounded by other chronic pain sufferers who understood and validated what she was going through. “Some of our patients have had their pain dismissed and been told ‘it's all in your head.’” Dr. Cole says. “We let them know that we believe their pain and believe they are hurting.”
With Dr. Calisoff’s help, she was put on a weaning schedule to reduce her dose of tramadol. Through biofeedback, guided imagery, mindfulness and deep (diaphragmatic) breathing, she learned how to release physical tension and reduce stress. In occupational therapy, she became aware of her posture and body mechanics and how both affected her pain levels. Her physical therapist educated her on improving her strength and endurance by being conscious of how she moved, why it was important to keep moving, and pace herself.
One day, a couple of weeks in, she realized she’d only taken one pain pill. By the time she finished the “in patient” part of the program, on May 28, 2015, she’d stopped taking all oral pain meds, including tramadol and Neurontin. She’s still uses topical pain relief and recently started another round of methotrexate.
For Becky, rehab has been life changing. “Before I was very depressed, had very low self-esteem, and was isolated—I internalized my problems, which made things even worse,” she says. “Now, through mindfulness and guided imagery, I’ve learned to let things go and to stop catastrophizing [ruminating and exaggerating her pain].”
She’s also learned how to do the things she loves, albeit in moderation. “I let myself have two days a week to hang out with my girlfriends. I'm back to driving and doing all the things I like that I couldn’t do just a couple of years ago.” One of her favorite activities is taking long walks with her Yorkie, Cece, along the nature trails near the couple’s summer home in Woodhaven Lakes, about two hours west of Chicago.
She still has bad days but she’s able to work through them. “Pain is not the boss of me anymore,” she says. “I’ve learned to control my pain and not let it control me. Right now, I’m the best I've ever been,” she says.
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