How “My Knee Notes” Can Change the Game for People with Chronic Knee Pain

Living with chronic knee pain is a challenging and often exhausting journey — just ask Tien Sydnor-Campbell. For over 40 years, she has contended with knee pain that began in sixth grade, initially brushed off as “growing pains.” Over time, her pain worsened, her mobility declined, and she struggled to convey the full impact of her pain to her doctors. 

Without a way to track her symptoms, Tien often felt overwhelmed in managing her health. But that changed when she developed “My Knee Notes,” a personal tool that helped her clearly communicate her experiences to her doctors. 

In her upcoming presentation at the American College of Rheumatology (ACR) Convergence, Tien will share her journey with “My Knee Notes” and how it transformed her communication with her medical team. “The presentation is about how I was able to use my notes (self-described as ‘Knee Notes’) to communicate with my medical team,” she explains. “The effect was improved diagnostic measures and eventual treatment for my arthritic knees.” 

Her goal is to inspire others to see how tracking symptoms, medications, and questions between appointments can lead to better, more personalized care. Tien’s message is clear: When patients are prepared, doctors can deliver more personalized and effective care. 

Understanding “My Knee Notes”

“My Knee Notes” is a tool Tien created to organize all her knee-related health information in one place, from daily symptoms to medication effects and nature-based care like heat therapy.  

Before each doctor’s appointment, Tien reviews her notes, highlighting what she wants to discuss and making sure that there are no missed details. This system has transformed her care, enabling clearer communication with her health care team and making each visit with her doctor more productive.  

A Changed Approach to Care

The impact of “My Knee Notes” goes beyond just organizing Tien’s symptoms. It represents a shift in how she approaches her care and interacts with her doctors.  

“This experience was the culmination of several years of complaining about my knee pain and not getting adequate treatment,” she shares. “It took a doctor really listening to me and not stopping the process of care because the test results weren’t strong enough, until I was heard and understood.” 

Now, Tien goes into appointments with a clear plan and pointed questions, expecting a collaborative approach. “It’s not a top-down or bottom-to-top relationship; it’s a cooperative relationship,” she says. By actively participating in her care, Tien has been able to make more informed decisions alongside her doctors, resulting in better outcomes. 

A Tool for Every Patient

Tien believes this tool can be valuable for anyone managing a chronic condition. Keeping a record of your health — whether newly diagnosed or managing symptoms for years — can make a significant difference. 

Through her presentation at ACR, Tien hopes to inspire and motivate others to start their own version of “My Knee Notes.”  It doesn’t have to be complicated; simply jotting down your daily symptoms, questions, and treatment experiences is a powerful first step. “It’s about taking control of your story,” she says, “and using it to get the care you deserve.” 

Here are some of the ways “My Knee Notes” has helped Tien — and may help you, too: 

• Pay attention to your body: Being in tune with changes in your body is essential for managing chronic conditions like osteoarthritis and rheumatoid arthritis. 
• Advocate for yourself: Knowing what you need and asking for it can make a huge difference in your treatment outcomes. 
• Seek a collaborative partner: Tien believes that successful care is a partnership. “Make a plan to find out what options are available for treatment, and look for a partner who will listen,” she advises. 

Why “My Knee Notes” Matters at ACR

When asked why she chose to focus on “My Knee Notes” for her ACR presentation, Tien’s answer was simple: “It is an example of the power of patient advocacy in a world where it has felt like patients have not always been heard.”  

For Tien, it’s not about criticizing doctors but recognizing that health care is most successful when it’s a collaborative effort. “Between patients who have a hard time getting a diagnosis or care, and doctors who look at testing results as the final say in treatment, it’s critically important that we listen to each other,” she adds. 

She hopes that both researchers, doctors, and other patients will attend her ACR session and walk away with new insights. “I hope that patients see this presentation and feel empowered in their health care decisions,” she explains. “And that rheumatologists are able to use aspects of my presentation with their patients. Especially because there is a resource tool for shared decision-making.” 

Sign Up for My OA Compass

Learn more tips from Tien and other OA patients by checking out a new tool from GHLF and Averitas! My Compass OA is a free tool you can use to navigate your OA journey, listen to other patients and doctors share advice, and download a printable question guide to support you in having conversations with your doctor. Use this free tool to guide you along the path toward a better life with knee OA.