Los Angeles Chronic Pain
Support and advocacy information for individuals dealing with chronic pain.
Author: paintom
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Budget Pressures Meet Pain
Step Therapy, Prior Authorization, and What California’s Budget Means for People With Chronic Pain Co-author: Victoria Killian, BCPA, PCM, CDME Living with chronic pain is already a full-time job. Fighting for care shouldn’t be another one. If you’ve lived with pain for any length of time, then you’ve probably had to fight tooth and nail…
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What Is PWLE? And Why the Terms We Use Matter
Putting People With Lived Experience at the center of research, guidelines, and health care One of the most common phrases I hear in patient engagement circles is PWLE — short for People With Lived Experience. What that really means is simple: people whose personal experiences with illness, chronic conditions, or caregiving make them experts in…
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PWLE vs. Stakeholders: Where Do They Fit in Clinical Trial Research?
Putting People With Lived Experience at the center of research, guidelines, and health care. When I first entered the world of clinical trial research, I heard the term “stakeholders” over and over. It was the word everyone used—sometimes loosely, sometimes with precision. But over time, I realized that the phrase could blur the most important…
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What Do We Mean by “People With Lived Experience” (PWLE)?
Putting People With Lived Experience at the center of research, guidelines, and health care. When we use the term PWLE – People With Lived Experience – it’s not just another acronym in health research or advocacy. It’s a way of honoring real lives, real stories, and real expertise that comes from walking through illness, injury,…
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Standing Together for Chronic Pain Awareness Month
Every September we set aside time to highlight Chronic Pain Awareness Month. For those of us living with pain, it’s not just a campaign or a slogan—it’s our daily reality. This month is a reminder to speak up, stand together, and let the world know that chronic pain is real, it matters, and it cannot…
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Caring for the Caregiver: Self-Care Isn’t Selfish
When we talk about caregiving, the focus is almost always on the person receiving care—their needs, their comfort, their well-being. That’s as it should be. But too often, what gets left out of the conversation is the caregiver’s health and resilience. I live every day with chronic pain. I know what it’s like to need…
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Filling the Cup: Why Self-Care Matters for Patient Advocates
Being a patient advocate is some of the most meaningful work I’ve ever done. It gives purpose, it connects me to others, and it helps turn pain into something that can help someone else. But here’s the truth: advocacy can also be exhausting. We carry not only our own stories, but the stories of everyone…
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What Works for Me: Managing Life with Chronic Pain
Living with chronic pain for over 37 years has taught me more than I ever thought I’d need to know about perseverance, adaptation, and self-discovery. Pain has shaped my days, my decisions, my relationships—and yet, it doesn’t define who I am. What defines me is how I’ve responded. This isn’t a guidebook or a prescription.…
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Getting Ready to Go:
What Works for Me While Traveling With Chronic Pain Travel and chronic pain don’t exactly make the best travel buddies. But over the years, I’ve figured out a few things that help make the process smoother, more manageable, and sometimes even enjoyable. I’m not saying it’s easy. But I’ve learned how to plan, stay flexible,…
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How to Read a Clinical Trial Results Report:
A PWLE’s Guide to Asking the Right Questions Reading the results of a clinical trial shouldn’t feel like cracking a code. But too often, it does—especially for those of us living with the conditions being studied. If you’ve ever opened one of those reports and felt like you needed a translator, you’re not alone. I’ve…
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What Really Works for Neuropathic Pain?
A Patient-Friendly Look at the Latest Evidence “Just give me something that works—and doesn’t make me feel worse.”That’s the quiet hope so many of us carry into every doctor visit. If you live with neuropathic pain like I do, you know the drill: try a new prescription, wait it out, cope with side effects, maybe…
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Centering the Person in Pain: Improving the CIPM Toolbox and Integrating MyPainPlan
I recently had the honor of presenting at the National Academies of Sciences, Engineering, and Medicine on one of the most essential tools I’ve used as a patient advocate and educator: the Comprehensive Integrative Pain Management (CIPM) Toolbox diagram. The audience was members of the Social Security Administration. With permission to use the model, I…
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What Counts as “Meaningful” Patient Engagement in Clinical Trials? A Global Glimpse at How It’s Measured
There was a time—and not that long ago—when patients were nothing more than subjects in medical research. Data points. Test cases. They were studied, but rarely asked what they thought. Now, that script is changing. Around the world, people with lived experience (PWLE) are being invited into research not just as participants, but as true…
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Remote CBT Programs Can Help Manage Chronic Pain — And Here’s the Proof – A Patient-Friendly Summary
On average, it takes approximately 17 years for clinical trial results to be adopted into routine practice. That’s not just a statistic, a warning. This number originates from health policy research that has been reviewed and confirmed across multiple studies. One of the most cited estimates comes from Dr. Eugene Balas and colleagues, who found…
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Showing Up is Enough: Motivation, Compassion, and Support in Chronic Pain Groups
Some days, brushing your teeth feels like a victory. When you live with chronic pain, even the smallest actions can take enormous effort. That’s why motivation doesn’t always look like progress, it often looks like perseverance. It’s no surprise that motivation can come and go like the tide, especially in a chronic pain support group.…