Erin Faulhaber’s earliest memory of joint pain predates her teenage years. Her mother asked her to peel potatoes, but Faulhaber couldn’t help. “My hand hurt so bad that I couldn’t hold on to a paring knife,” she says.
Soon she found she couldn’t grip anything without her hands aching. Then, in high school, she had to have surgery on one knee, despite not having any injuries. “I wasn’t athletic,” she says. “I was the timekeeper on the track team – I wasn’t on the track team.”
Thus began a decades-long cycle of her doctors seeing symptoms without trying to piece them all together. The other adults in her life didn’t do much for her morale.
“I had all these mysterious illnesses that had no explanation. Everyone thought I was a hypochondriac. Or they thought I was lazy,” she recalls. “Even my parents thought I was trying to get attention. I thought I was crazy. All these people were telling me there’s nothing wrong with me, but there was something wrong with me. I wasn’t psychosomaticking all this stuff.”
During this period, the joint pain started to steal her energy. Teenagers need sleep, but not like Faulhaber. She would come home from school and nap. Her mother would wake her for dinner, then she’d do her homework and go back to bed until morning.
The peak pain period
Faulhaber, 41, an Oregon native and Portland resident, and her husband, Richard, have one son, Jeremy. Faulhaber’s joint pain peaked during her pregnancy when she was 25. Some of her fingers locked in one position, forming a “claw.”
Faulhaber saw her first rheumatologist in 2003. Her blood tests were normal. She wasn’t anemic and she had none of the factors that indicate rheumatoid arthritis. “Unfortunately, there is no blood test for psoriatic arthritis,” she says. Her rheumatologist put her on more powerful anti-inflammatory pain medicine.
She returned to her rheumatologist in 2007, reporting more pain, now in her hips, hands and lower back. Her test results remained the same: negative. This time, the rheumatologist sent her to physical and occupational therapy.
Meanwhile, her administrative job at the University of Portland, which mostly involved data entry, was becoming more stressful due to the constant overuse of her fingers. The arch of her right foot hurt and her right ankle swelled. The pain and swelling stayed the same whether she was active or inactive. Her doctors thought she had tendinitis in her fingers and plantar fasciitis in her foot. The fatigue became almost unbearable.
“I wasn’t functioning. I was coming home and passing out,” Faulhaber says. “I’d sleep 20 hours a day if I could. I wouldn’t get up to get a drink, I wouldn’t get up to go to the bathroom. My husband would wake me up to make sure I was OK.” She had to take a leave of absence from her job.
The sum of her symptoms
By 2011, Faulhaber’s doctors had tried her on multiple systemics, rheumatoid arthritis medications, and nonsteroidal anti-inflammatory and disease-modifying anti-rheumatic drugs. That year, she found a new primary care provider. She presented with hand pain, foot pain and breakouts on her face and hands, including an inflamed fingertip. He was the first doctor to step back and examine her symptoms as a whole.
This doctor brought another doctor into the exam room for a second opinion. They were convinced they were looking at a massive systemic issue, even without the telltale sign of a rheumatoid factor, she says. They sent her back to her rheumatologist, who diagnosed her with psoriatic arthritis. She retired immediately and went on disability that same year.
Faulhaber and her rheumatologist experimented with several biologics, keeping in mind her long history of side effects. After several misfires, she started a biologic in 2014 that “got my hands working in a month,” she says. The biologic her doctor added in 2017 made her less tired and more functional during the day, she adds. She also gets occasional steroid shots for specific joint inflammation.
Today, Faulhauber has a new rheumatologist whom she likes very much. She’s not happy with her current level of inflammation, fatigue and pain, but she is happy about getting “a good chunk of my life back.” She’s regained some energy, stayed away from carbs for more than a year and lost 70 pounds. With her newfound energy, she spends time wearing many different hats as a volunteer with the National Psoriasis Foundation. “I want to be useful and it keeps my spirits up. Plus it is a bonus that I am helping people with my same disease!”
Where to turn for help
Our Chronic Pain Management Hub offers resources to help you cope with chronic pain, including a free pain management guide. You can also speak with one of our Patient Navigators if you have questions about psoriasis and psoriatic arthritis.
Photo: Erin Faulhaber staffs a Team NPF Cycle table in April 2017
Driving discovery, creating community
For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.