Because Antidote’s key focus is connecting patients to clinical trials, hearing directly from individuals serves as a great reminder of why we do what we do. One patient we’ve had the pleasure of speaking with is Linda VandeVrede, a former high-tech PR executive who shared her story of chronic pain, clinical trials, and personal experience.
Linda has become an integral voice in the research advocacy space. She originally found us through social media and agreed to talk with us about how she’s channeled the lessons she learned from her career into her spirited self-advocacy. Read on to learn more!
Perspectives from a chronic pain patient
In the mid-2000s, Linda’s career path put her on frequent flights to and from Europe, and those flights are where her chronic pain began. In the air, her pain flared — but because it subsided as soon as she landed, her high-pressure workload didn’t allow her to find much time to prioritize addressing the pain. That is until, one day in 2007, she felt a sensation in her right leg so intense that she went to her doctor immediately. When the X-ray revealed no issues, Linda’s quest to figure out her condition began.
Eventually, Linda was forced to give up her career due to the pain — she couldn’t sit or stand in front of her computer for any length of time. She devoted the next five years of her life to finding an answer, consulting with neurologists, acupuncturists, physiatrists, and more, but no one could provide answers or relief. “After a while,” she states, “you get the sense that because doctors can’t find anything, either they don’t believe you’re really in pain or they just want to move on to someone they can help.”
Desperately searching for answers, Linda came across an online forum of people with the same symptoms she had. Through members of this forum, she found her answer: Piriformis Syndrome, a condition in which the piriformis muscle constantly suppresses the sciatic nerve. It’s very uncommon and is typically caused by either repetitive or sudden trauma. In her research, she uncovered a paper on the condition that mirrored her experience perfectly; after reaching out to the surgeon who authored it, she finally began making progress toward getting relief.
When she went to see the surgeon, he instantly knew how to trigger her pain — and thus, believed he would be able to address it. Thrilled that she had found someone who finally “got it,” Linda agreed to an invasive surgery, where the doctor was able to release some tension. Unfortunately, he also discovered irreparable damage to her sciatic nerve. Though the surgery was helpful, by the time she received it, her nerve had become too damaged for her full quality of life to return. If she had been able to receive this procedure ten years earlier, the results would have been different.
Unable to find complete relief, Linda lives in a constant state of pain. She is vocal about the harm caused by sensationalist media stories that focus on drug-addicted pain patients and is anxiously awaiting trials for a new class of medication called sodium channel modulators. She considers herself well-educated on chronic pain and her treatment options, but she continues to find “ClinicalTrials.gov so incredibly frustrating.” In her experience, the multitude of names for chronic pain makes her condition difficult to research, and she’s grateful for clinical trial search tools like Match that can remove the guesswork from finding research studies.
In addition to advocating for better solutions for pain patients, Linda is also vocal about the importance of clinical research and has built a large social media network that allows her to connect with some of the 100 million others who experience chronic pain. She says, “When you have pain, you’re not likely to get out there and advocate for yourself. It’s disabling, but people can’t tell you have a disability. You can spiral. I try to stay positive for me and for everyone else.”
Linda’s message to other patients is to realize early on that you are your own best advocate. It’s important to educate yourself and not be afraid to take the lead on doctor’s appointments. Doctors may be experts in medicine, but it is the patient who is an expert on their feelings. We’re so grateful that Linda took the time to share her wisdom with us. If you’re a patient looking for a clinical trial, click the button below to get started.
