Version July 2025
INTRODUCTION —
This topic was written by an individual patient diagnosed with gout. It is intended to offer clinicians insight into the experience of a single individual from that individual's point of view, which may enhance clinical practice and health care delivery. This description of a particular patient's experience is not intended to be comprehensive or to provide recommendations regarding diagnosis, treatment, and/or medication information. It is not intended to be medical advice or to be a substitute for the medical advice, diagnosis, or treatment of a health care provider based on the health care provider's examination and assessment of a patient's specific and unique circumstances.
For related clinical topics, please see:
●(See "Gout: Clinical manifestations and diagnosis".)
●(See "Gout: Treatment of flares".)
●(See "Gout: Pharmacologic urate-lowering therapy and treatment of tophi".)
●(See "Gout: Nonpharmacologic strategies for prevention and treatment".)
UpToDate also offers patient education materials. "The Basics" topics are short overviews written in plain language, at the 5th to 6th grade reading level, that answer the main questions a patient is likely to have about their condition. "Beyond the Basics" topics are written at the 10th to 12th grade reading level and are intended for readers who are seeking more detail and are comfortable with some medical terminology. You can share this content directly with your patients:
●(See "Patient education: Gout (The Basics)".)
●(See "Patient education: Gout – ED discharge instructions (The Basics)".)
●(See "Patient education: Gout (Beyond the Basics)".)
MY STORY —
I have been living with gout for over 30 years. My journey to a diagnosis of gout was long and frustrating. Ultimately, it taught me the importance of self-advocacy, finding the right doctor, and treating gout early to prevent complications.
My experience with gout has gone beyond impacting my health; it has reshaped my life. Gout is now a part of who I am and the reason I started working in patient advocacy. I hope that sharing my story inspires other patients to advocate for themselves. In addition, I hope it provides clinicians with some insights into living with gout and encourages them to improve communication with their patients.
DIAGNOSIS
Initial symptoms — I can still remember exactly when my symptoms of gout started. I was walking from one class to another at university when my ankle started to swell out of nowhere. By nighttime, the pain was unreal; there was sharp, stabbing pain all through my ankle and foot that made it impossible to think straight. When I called my dad the next day looking for an answer, I heard the word "gout" for the first time. My dad explained that both he and my grandfather had gout. Until that conversation, I had no idea that gout ran in our family.
The struggle to get a diagnosis — My dad encouraged me to see a doctor. I walked into the doctor's office where I explained the intense, sudden pain in my ankle, our family history, and my suspicion that I could have gout. The doctor listened for a few minutes before dismissing the idea entirely, saying gout was a condition that affects older people and that I probably hurt myself without realizing it. He told me that I would be fine and offered to write a prescription for pain medication. I walked out of the doctor's office feeling relieved that I did not have gout.
Unfortunately, my relief did not last long, as the pain kept coming back. Each gout flare felt like there were a thousand tiny people jabbing the inside my joint with pitchforks. I continued to see my doctor hoping for answers, only to be offered temporary relief with pain medication, without a real solution to treat the root cause.
This cycle went on for 16 years. I would have a gout flare, see the doctor, and leave the office feeling defeated, with a temporary prescription for pain medication. The flares got worse over time, to the point where I sometimes needed crutches or even a wheelchair to get around. While the physical pain was brutal, the feeling of not being taken seriously was even harder to cope with. The loneliness that came from doctors dismissing my symptoms made the pain much harder to bear.
The turning point — The turning point in my journey came when I self-referred to a rheumatologist in 2010, after a shift in my health insurance that allowed specialist visits without a physician referral. My rheumatologist checked some blood tests and, sure enough, my urate levels were very elevated. Together with my history and physical examination, my rheumatologist made a diagnosis of gout.
Although being diagnosed with gout was a relief, it was also frustrating to realize that I could have been diagnosed sooner. By then, I had joint damage related to gout and had lost almost 20 percent of my kidney function from overuse of pain medications. Looking back, I think of how much suffering could have been avoided if one of my doctors had done more testing early on. Making a diagnosis earlier could have saved me years of pain, frustration, and feeling misunderstood.
TREATMENT —
What worked for me to control symptoms of gout was a combination of support from my health care team, medications to lower urate levels, and lifestyle tweaks.
Finding the right provider — Meeting my rheumatologist was a game changer. For the first time, I felt like a doctor was really listening to me. He explained everything in a way that made sense and helped me feel more in control. Finding a doctor who listened with empathy has made all the difference in creating an effective treatment plan together.
Developing a trusting relationship with my rheumatologist was pivotal. I learned from him that while gout has no cure, it can be effectively managed with proper medication. Knowing that I could live a normal life with the right treatment gave me hope, and understanding the root causes of gout allowed me to take an active role in my care.
Treating the underlying cause — After finding the right provider, the most important piece of my treatment plan was finding the right type and dose of urate-lowering medication. I was initially prescribed allopurinol but struggled with adverse effects, such as itchy skin and rashes. I eventually joined a clinical trial for pegloticase, which was later approved by the US Food and Drug Administration. The first three months of taking this medication were difficult due to frequent gout flares that made me want to quit. However, the medicine worked, and my urate levels dropped to 1 mg/dL. Later, I switched to febuxostat and have kept my urate levels steadily below my goal.
What did not work to treat my gout? Trying to control it with diet alone, which got me nowhere. Despite the widespread myths and stigma around gout, this condition is not just about the food I eat: It is about how my body handles urate. No matter how much I avoided certain foods, I continued to experience gout flares. Moreover, I love food, so sticking to a strict diet felt miserable. Instead of strict dietary restrictions, I find it helpful and manageable to avoid fructose and limit beer, while eating all foods in moderation. I have also incorporated low-impact exercises to build muscle and support my overall health.
MESSAGES FOR OTHERS
Advice for patients — The most important advice I want to pass along to other people living with gout is the importance of self-advocacy, persistence, and peer support:
●Self-advocacy and persistence – In order to get the right diagnosis and care, I needed to advocate for myself and persistently search for the cause of my symptoms. Although switching doctors was tough for me, it was necessary to get the right diagnosis and treatment. This experience taught me that it is essential to advocate for myself, even when it is uncomfortable. If my earlier doctors had seriously considered a diagnosis of gout, I could have avoided years of unnecessary suffering. If you suspect that you have gout, talk with your health care providers and consider getting further testing. Patients should not feel bad about asking questions or seeking better care. Finding the right provider is a game changer when living with gout.
●Peer support – Connecting with other people who have gout has made a huge difference for me. The positive impact of these connections inspired my rheumatologist and I to start the Gout Support Group of America (GSGA) in 2015. What began as a small group meeting in my doctor's office has grown into an online community of over 16,000 members. GSGA offers a space for people with gout to find hope, education, and support while learning to manage a disease that is, in fact, manageable. At GSGA, we host educational events, share helpful resources, and provide a platform where members can exchange stories, ask questions, and get the support they need. We believe that no one should have to go through this journey alone, and being part of a well-connected community can help reduce the isolation and stigma often associated with chronic conditions like gout. For more information, visit: www.goutsupportgroup.org.
Advice for clinicians — I hope that sharing my experience can help providers recognize the importance of the following actions in caring for patients with gout:
●Make a timely diagnosis – Early diagnosis and treatment of gout are crucial. I struggled to get a diagnosis of gout because my initial doctor was not familiar with how gout can present in younger patients. It is important to listen to patients, maintain an open mind, and reconsider the diagnosis when patients are not improving.
●Appreciate the wide-ranging impact of gout – I hope that clinicians can appreciate that gout is more than just flare-ups of arthritis. It can cause serious complications, such as permanent joint damage and kidney and heart disease, especially when left untreated. In addition, even "minor" symptoms can have a major impact on patients' daily lives. As an example, joint pain and stiffness associated with gout flares made it difficult for me to get in and out of a car or apply pressure on the gas pedal while driving, which limited my mobility and independence. Additionally, I often struggled to stay productive at work because the pain made it hard to focus and complete tasks effectively.
It is also important for clinicians to recognize how gout can negatively impact mental health in addition to physical well-being. I live with what feels like an invisible disability that is often misunderstood and carries a stigma; this can leave me feeling isolated and frustrated.
●Maintain a nonjudgmental attitude – Finally, it is important to remind patients that gout is not their fault. Too often, people feel guilty, as if they somehow caused their condition. Gout is a complex disease and patients need empathy and support rather than judgment. This is especially true when discussing lifestyle modifications, such as changes in diet, that must be balanced and tailored to the individual.
FINAL THOUGHTS —
While living with gout has not been easy, it has given me a sense of purpose by showing me how my experiences can bridge the gap between the health care sector and the patient community. My journey has taught me the importance of fostering understanding between clinicians and patients, which helps health care providers appreciate the full impact of gout on daily life while empowering patients to advocate for their needs.
Looking back on my journey, I have also come to understand how critical it is to make an early diagnosis to manage flare-ups and prevent long-term complications. Gout is often accompanied by other serious health issues such as kidney and heart disease. Treatment is therefore about more than stopping the pain of intermittent gout flares; it is also about treating the underlying cause to minimize future complications and the constant worry of what comes next.
My hope is that clinicians and patients alike realize the importance of addressing gout early. Providers must listen to the symptoms, treat the cause, and remind patients that gout is not their fault. With empathy, support, and a thoughtful treatment plan, we can help people with gout live full, pain-free lives and rest assured that they are not fighting their battle alone.
