Jen’s Story: Living with Gout at a Young Age and Finally Finding Relief

Struggling with gout at a young age?

Read this powerful personal story of misdiagnosis, chronic pain, and hope, plus how this patient with gout at a young age finally found lasting relief.

Gout doesn’t just affect older men, it can strike at any age, and often goes undiagnosed for years. In this powerful story, a young woman shares her journey through misdiagnosis, relentless flares, and hopelessness before finally finding the right specialist and treatment plan. Her experience sheds light on the challenges of living with gout at a young age, especially with chronic kidney disease, and offers a message of strength, advocacy, and long-term hope for others navigating similar pain.

Jen’s Story, In Her Own Words:

I was in my mid-20s when I woke up one morning with awful ankle pain. I had no idea what I’d done, but I hobbled to urgent care for help. After an exam and an X-ray, I was sent home with a “probably just a sprain” diagnosis. Honestly, that didn’t seem unreasonable at the time. A few days of rest, and it got better.

Then it happened again four months later. This time I tried a different urgent care, but the experience was identical. X-ray. Not broken. Probably a sprain. Rest and ice. Gone in a few days. Frustrating, but not alarming.

The third time, a few months later, the pain was worse. We went to the ER. They were happy to tell me, “It’s not broken!”, but by then, I was kind of hoping it was. Something. Anything. We pushed for more, but they insisted I must be injuring it somehow (in my sleep, yeaaaaaa) and sent me home with the usual “rest, ice, elevate.” And again, after a few days, it was better.

The fourth time, I saw a podiatrist, finally thinking I’d get some real answers. She too guessed it might be a small fracture and did more X-rays, which showed nothing, but she thought we might be missing a small one, and wanted to fit me with a boot. When the nurse came in to fit the boot, I screamed so loudly he ran out of the room. (Pro tip: never try to put a boot on a gouty foot.)

That scream was a blessing. The doctor came back in and started asking more questions. She saw in my chart that I had chronic kidney disease (CKD), and finally said the words: “You know, there’s this thing that can happen to kidney patients called gout…”

She gave me a steroid pack and told me to follow up with my nephrologist. When I called him, he said, “Oh yes, that can happen. I’ll call in a gout medication.” No mention that CKD patients are more at risk. No education. Just a pill and instructions to call when it flared again.

And of course, it did.

Two months later, I called, got another steroid pack, and repeated the cycle. Over and over. With every flare, the dose increased. The flares became more frequent, more painful, and longer lasting. I was a young mom, sidelined constantly, unable to walk, or honestly, even move, every time a flare hit. Each one was somehow worse than the last, even when I thought it couldn’t possibly get worse.

Google was no help. Drink cherry juice. Avoid purines. Try this. Buy that. I tried it all.

We knew it was gout. I was taking the medication, (4-5x the original dose at this point). My doctor knew it was worsening. And yet, I flaring every 2 weeks, for 4-5 days at a time. I truly thought we were doing all we could.

My low – hysterically sobbing on the floor in my shower, honestly deciding if live was worth living, thinking that I was ruining my husband’s and son’s lives completely, and knowing that I just could not live like this anymore. I was exhausted, terrified, and had no hope left.

Somewhere deep down, I found strength, and called my nephrologist and completely lost it on him, fired him, and then the nurse came on the line. And she said something that changed everything:
“I think you might need a rheumatologist.”

I didn’t even know what that was. But I made the appointment.

That rheumatologist sat with my husband and me for nearly two hours at the end of his day. He listened. Really listened. He explained what gout was, how it works, and why my CKD was likely the trigger. He prescribed colchicine and said our first goal was one month flare-free. Then we’d talk long-term.

I went a month without a flare. For the first time in years.

When I came back, needless to say I trusted him completely. He explained that my uric acid had probably been building up in my body since I was 12. That we needed a medication not just to stop the buildup, but to clean house! He prescribed an infusion treatment, and I did it faithfully for 7 months. No flares. Just healing.

In the most sincerest way possible, that rheumatologist saved my life.

It has been over a decade since I found that doctor, and changed my gout story. My gout is completely under control, and I have been flare free for so many years now that sometimes I even have to remind myself that chapter even existed. Life is good, amazing really, and full of that happiness and hope I had lost.

If you’re reading this in the middle of your own gout journey, especially if you’ve been told you’re “too young” to have it, please know you are not alone. I know how invisible, blamed, and hopeless this disease can make you feel. But I also know that better days are possible. Gout at a young age is real. There are providers who will listen. There are treatments that work. And there is a community here at GSGA that gets it.

When you’re ready, start with the Gout Roadmap.

It was built by me and people like me (the amazing GSGA team!), for people like you, because no one should have to face gout alone.