Stories
Living with out-of-control gout



Daniel’s Story
“The average person doesn’t understand how much pain I’m in. I did my own research on gout, but never truly understood how to manage it.”
Looking back, the pain, swelling, and redness in my ankle were all signs of gout; I just didn’t know it then.
I was a hardworking, aspiring chef and assumed the pain was a result of spending long hours on my feet. Except after each day, the pain continued to get worse. What should have been an easy task, walking 2 blocks to work, became a challenge. After consulting a doctor, I began taking an over-the-counter pain reliever. But just 5 days later, I found myself in the emergency room, struggling to walk.
Fortunately, the emergency department doctor recognized my symptoms and ordered a test to determine my serum uric acid (sUA) level. The results came back indicating an sUA over 6—1 sign uric acid crystals were building up. I had gout.
I continued to experience gout flares, and they were occurring more frequently. Eventually I started to see bumps appear under my skin on my feet, elbows, and hands. I learned these bumps that were rapidly growing were tophi, formed by the uric acid crystals depositing in my body. Unfortunately, my dreams of being a great chef took a back seat to the ongoing gout symptoms and my uric acid level remained high despite the use of oral therapies.
Beyond the physical toll, the burden of gout was extremely frustrating. I was so embarrassed and would wear gloves and elbow pads in an effort to hide my gout-caused disfigurations from everyone around me.
Over the next 2 decades, my gout continued to be uncontrolled, and the skin over my tophi on my toes opened up and wouldn’t heal. I had to see an orthopedic surgeon who worked to drain and manage the uric acid buildup, but over time, it could no longer be managed. Unfortunately, I became one of the few people who needed to have the toes on my left foot amputated. It was a very dark time in my life; I even considered an amputation up to mid-calf and came close to having 2 knuckles amputated. Looking back, I realize I never truly understood gout and how to manage the disease—that not a lot of time was given to explaining what might happen if it became uncontrolled.
Eventually, I was referred to a gout specialist to find a solution that was right for me. Working together, I was able to obtain better control of my uric acid and see reductions in my tophi. Even though I’ve been through so much—the pain, the losses, the suffering—I wouldn’t change a second of it because it’s brought all the right people into my life.



Chris’ Story
“I want others to know the truth about gout: that it can happen to anyone, and it isn’t your fault. Once I learned that, it was easier for me to advocate for myself and find answers.”
Chris was an active 26-year-old student preparing to apply for nursing school when he first felt a throbbing in his toe. At the time, he assumed it was related to a leg injury he suffered earlier that year, and he ignored it. Months later, the throbbing continued. And Chris says that his knee “grew to the size of a bowling ball.” Finally, the pain became so unbearable that Chris was unable to take a single step without pain, and he could no longer deny something was seriously wrong.
With the help of his girlfriend, Chris researched online and found that his symptoms were aligned with gout, a serious and painful form of arthritis caused by too much uric acid in the blood. He talked to his primary care doctor about his symptoms and the possibility they may have been caused by gout. But his doctor dismissed the potential cause, telling Chris he was “too young to have gout.”
As his symptoms worsened, Chris continued to research and learned that a blood test could help him get the answers he needed. He went back to the doctor and insisted on the blood test, and the results showed his uric acid level was higher than it should be. Finally, Chris was diagnosed with gout, nearly 3 years after he first felt the throbbing in his toe.
But that would only be the beginning of his journey.
Chris’ doctor prescribed him oral therapies to lower his uric acid and told him to make changes to his diet. Chris did as he was told and continued his online research to learn what others were doing to improve gout symptoms. He read about reducing meat intake, cutting out shellfish, and drinking cherry juice—so he tried it all. But even with lifestyle changes and medications, Chris continued to experience painful gout flares.
His gout continued to get worse to the point that Chris did not participate in activities that made him happy, like hiking with his girlfriend or going out with friends. He stopped working on his nursing school application and rarely left the couch because of the pain. Chris would set a daily goal of 200 steps—about 2 street blocks—and even that was difficult most days.
Beyond the pain, Chris struggled with his doctors, friends, and family not understanding what he was going through. He felt isolated and blamed for his gout, even though he was doing everything he could to get better. Chris explains how it was frustrating that nothing seemed to help, and no one seemed to understand.
After seeing multiple doctors and continuing to speak up for himself, Chris was referred to a rheumatologist who really listened and recognized that Chris was living with out-of-control gout. Out-of-control gout is when a person continues to experience symptoms despite being on oral medication to lower uric acid. The rheumatologist helped Chris evaluate different options to better control his uric acid. Chris finally had full support from his doctor and a plan to get his gout under control.
Today, Chris’ uric acid level is normal. His gout is no longer out of control and he’s enjoying the things he loves again. He recently went on a hiking trip with his girlfriend and is working on finishing his application for nursing school.
Because of his experience with out-of-control gout, Chris is passionate about raising awareness and helping others understand that gout can impact anyone, no matter your age or diet. His advice to others impacted by out-of-control gout? Don’t accept the pain of gout. You can do something about it. Advocate for yourself and find a gout specialist who can help you.