Finding Blessings in the Midst of Oppressive Pain, Delayed Diagnosis
By Pressley Frevert
Amy Liles is relentlessly positive. Even at the end of a long day of taking care of her mom and granddaughter, her voice is joyful. She brags on her four kids and five grandkids and talks about her faith and the friends she’s made in her online pain groups.
What Amy, 53, doesn’t bring up is that, on any given day, she’s also battling severe chronic pain.
Amy, who lives in Florence, Alabama, has gout and fibromyalgia, conditions she’s lived with for more than two decades. Her gout affects joints throughout her entire body, and her fibromyalgia, as her rheumatologist explained, can intensify that pain exponentially.
“At first, I did focus on all the bad, because I felt like that’s all it was: bad, bad, bad,” she says. But now, she adds, every morning, “I pray and I give it to God.”
Amy’s pain began in her early 20s.
She was an active mother, working as a paraprofessional with special needs students and helping coach her school’s cross country and track teams. Out of nowhere, her feet started to swell and caused her intense pain. Even though she had no memory of tripping, doctors diagnosed stress fractures in her feet multiple times. Her pain worsened, she kept coming back, and they always had the same answer.
“I kept thinking, ‘How does this keep happening to me?’” she recalls.
Then her back began to bother her. It eventually hurt so much that she couldn’t get out of bed. Her doctors thought she was having stress fractures in her back, too.
This cycle continued for years. At one of her lowest points, Amy had to wear walking boots on both feet for six weeks for her supposed stress fractures. Her pain never went away.
After 10 years, Amy asked a rheumatologist if the pain could be the result of something other than stress fractures. She was also repeatedly having kidney stones and had sky-high levels of uric acid, a waste product that typically dissolves in the blood and is flushed from the body through a person’s urine.
Her rheumatologist diagnosed her with fibromyalgia, a chronic pain disorder that causes all-over pain and fatigue, and put her on a few different medications. But her pain continued for more than five additional years—and she now realizes that what she was experiencing was actually gout.
The rheumatologist Amy was seeing in her small, rural town had never run labs or mentioned gout. Looking back, Amy thinks this was because women are less commonly diagnosed with the condition.
Regardless of what her various doctors called it, her pain was making it hard for her to get out of bed, let alone show up for her kids—and that’s what finally made her decide to push for more. She found a new doctor who referred her to a rheumatologist an hour and a half away.
The rheumatologist pointed out the tophi (a buildup of uric acid crystals) on her hands and feet and officially diagnosed her with gout, a severe form of arthritis. Amy’s next stop was the University of Alabama at Birmingham, where doctors did a full gout study on her, discovering the disease affects her entire body—an extreme case.
IN A FLARE
Amy’s daily, baseline pain is extreme in and of itself. But when she’s in a gout flare, the pain becomes so excruciating that it’s hard to put into words.
“It even hurts if the sheets touch you,” she shares. “Even air blowing against me hurts.”
She mainly experiences flares in her feet, making it difficult to walk, so she keeps a walker and cane handy. She also recently had a bedside toilet installed; she’s been through too many middle-of-the-night flares that leave her in too much pain to make it to the bathroom.
Sometimes these flares can last for months, she says. She initially was prescribed steroids to help with her pain, but she developed Cushing disease, a condition where her body produces too much cortisol in response to steroids. So she had to stop the steroids and simply wait it out.
She has her tricks: she walks on her heels or the sides of her feet to avoid the most painful spots. She uses a motorized scooter when she shops in the grocery store to limit inflammation, which can trigger or exacerbate a flare. She sticks to specific brands of tennis shoes and sandals that are most comfortable for her.
Luckily, she jokes, she can make the sandals work with a lot of outfits: “I’ve got my sparkly ones; I’ve got my bronze-looking ones,” she says.
In true Amy fashion, she’s still finding the positive, even when her pain is at its worst.
Treating Amy’s gout hasn’t been a straightforward or easy process.
After she was diagnosed, doctors prescribed gabapentin, an anti-seizure medication that is also used to treat nerve pain.
But she continued to experience severe pain for years, and increasing the dose didn’t help.
“I was living in a fog,” she recalls. “I don’t remember my oldest daughter’s wedding. I couldn’t tell you anything about it.”
That experience forced her to begin advocating for herself in a different way.
Amy changed doctors and eventually switched to an infusion medication that is often used for patients who don’t respond well to other gout medications. The infusion treatment takes about four hours every other week. It was a draining and frustrating journey as she fought for someone to listen to her.
“You feel like you’re crazy,” she shares. “People think you’re trying to find something wrong with you.”
She even worried about hurting her doctors’ feelings. Amy lives in a small town, and she was friends with many of the orthopedists who misdiagnosed her with stress fractures for a decade.
Now, she uses her knowledge to help others. She is an active member of several groups, like the Gout Support Group of America, for people who live with gout and chronic pain. There, she shares her experiences—and urges members to do their own research.
BLESSED TO BE A BLESSING
While trying to figure out which medication would work best for her, Amy began to experience new pain, this time in her stomach. Her doctors originally thought she had a hernia, but a scan of her abdomen to ensure she could begin the gout infusion treatments showed that her new pain was caused by kidney cancer—specifically renal cell carcinoma, another illness that primarily affects older men.
In the midst of extreme pain, she had to temporarily stop her gout medications to have half of her left kidney removed in 2021, which completely treated the cancer. Her switch to the gout infusion treatments was paused for a year while the kidney cancer was treated.
But she chooses to see all this as a blessing: Had she not been diagnosed with gout, doctors might not have discovered her cancer when they did.
Without the gout diagnosis, she might not have met a woman at the clinic where she receives gout infusions, a new best friend who also lives with gout and who has “held tight” to Amy, as she puts it. Her friend’s lack of family makes Amy even more thankful for the strong relationships she has with her kids, her grandkids, and her mother. A new friend and a loving family: two more blessings.
Had it not been for her diagnosis, she also might not have reconnected with a childhood best friend on Facebook. Her friend has complex regional pain syndrome (CRPS), a persistent, intense nerve pain that often develops after an injury or surgical procedure. They’ve bonded over their extreme pain levels.
“I know what you feel like,” Amy told her friend. “We’ve got to smile, we’ve got to make it through this, and I’m here for you.”
Her long-lost friend—another blessing.
Every day, Amy experiences unfathomable pain. But still she finds hope. And she believes she has been blessed for a reason—to help other people.
“I do for others. That’s just how I’ve always been,” she says. “It’s my gift, and I can’t seem to turn that gift off.”