Lacy Fowler is a patient who developed a condition called arachnoiditis. Lacy shares what it’s like to live with a rare chronic pain condition and her motivation for becoming an advocate. You can read her personal story here.
HealthCentral (HC): What is arachnoiditis?
Lacy: Arachnoiditis is inflammation of the arachnoid membrane (one of three protective membranes surrounding the nerves of the spinal cord). Chronic inflammation leads to intractable pain, neurological, and other symptoms.
HC: How and when were you diagnosed with arachnoiditis?
Lacy: I vividly remember that November day in 2013. I was seeing the doctor to get my MRI (magnetic resonance imaging) test results. He pulled up a folding chair and looked me directly in the eye. His body language commanded my attention — something that had never happened before. I am not sure why he engaged so intensely, because he did not share what he knew.
Instead, he said: “Go home and lie down for a week; see if that helps the pain subside.” It did not. In May of 2014, I requested copies of my MRI and the radiologist’s report. That is when I learned the source of my pain, and my diagnosis.
HC: Was it difficult to find out there were answers, but no one told you?
Lacy: Yes, I was stumped, devastated, and scared. My pain was not addressed in November 2013, or in the years leading up to that MRI. But, I was determined to navigate the torturous waters of a rare condition I knew nothing about.
HC: What is the most important thing you learned?
Lacy: The most important thing is its rarity. Arachnoiditis affects less than 2 percent of the population. And, results such as mine don’t always show up on an MRI. It can be difficult to diagnose, because symptoms can vary. Arachnoiditis can be a progressive, chronic, lifelong problem and it can go undiagnosed.
HC: How did you become an advocate?
Lacy: The lack of information and communication from the medical community put me on a path to finding a treatment plan that works for me. My motive to help lessen my pain resulted in me becoming an arachnoiditis and chronic pain delegate for the International Pain Foundation (iPain).
HC: I am honored to know you used the information on state laws from my website. How did it help?
Lacy: Your resources led me to my state’s intractable pain law, Missouri Statue 334.106.1 and information on the Rare Orphan Drug Act of 1983. I have been passing out packets of information to Missouri lawmakers, doctors, patients, and those who can help improve quality of life for those living with arachnoiditis.
In 2016, Gov. Jay Nixon, signed the Missouri Arachnoiditis Awareness Proclamation, which is registered with the International Pain Foundation. I have now applied for a “2017 Arachnoiditis Awareness Proclamation” through the office of Missouri’s current governor, Eric Greitens.
HC: I was impressed with how you involve your community. Please share your experiences.
Lacy: I develop butterflies in any social setting, whether it’s with an individual or a group. But, doing something I am passionate about is helping me overcome my anxiety. I have found many ways to share information and inspire others. For instance, the students at the Skyline R2 District helped put together a nametag I can use to identify who I am to the public.
HC: Why did you start your arachnoiditis Facebook page?
Lacy: I wanted to build a page that offers access to information that encourages patient empowerment and recognition of rare diseases. I had lost so much of myself due to untreated pain, and others have, too. Ironically, development of Arachnoid Chronicles (see link below) became a healing process. My pain has helped me blossom into a better person.
I want to thank Lacy for her commitment to raising awareness, not only about her own condition, but also about other painful and rare disorders. According to the National Organization for Rare Disorders (NORD), there are nearly 7,000 rare diseases in the United States.
Join the conversation on Lacy’s Facebook page, Arachnoid Chronicles, where you will find information on intractable pain, orphan disorders, and upcoming educational events regarding the impact of rare, painful, and invisible illnesses.
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Celeste Cooper, R.N., is a freelance writer focusing on chronic pain and fibromyalgia. She is lead author of Integrative therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain and the Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain book series. She enjoys her family, writing and advocating, photography, and nature. Connect with Celeste through her website CelesteCooper.com, Twitter @FibroCFSWarrior, or follow her Facebook page.