Just recounting Lynn Julian Crisci's story can leave you asking: "How did she do that?" Lynn is an accomplished actor and the former vocalist, Cookie Cutter Girl, a self-styled "21st-Century
Pop Superhero" who released her own CD in 2005. She suffered a devastating onstage fall in 2006, severely injuring her head and neck. Lynn was bedridden, then in a wheelchair, for almost three years. She walked with a cane until the summer of 2012.
Less than a year later, Lynn was a street-side spectator at the Boston Marathon on April 15, 2013, when the infamous bombing occurred, severely injuring her among many others. She suffered a frontal-lobe traumatic brain injury (TBI) from the blast-force trauma, a now chronic low-back injury, permanent hearing loss, and severe post-traumatic stress disorder (PTSD).
Throughout all of this, she's also managed fibromyalgia, a diagnosis that came in the 1990s. Lynn, who is 41, talked frankly to HealthCentral in a telephone interview about how she deals with her ever-present pain while living an exhilarating life.
HealthCentral (HC): Your brain has taken quite a beating, Lynn. What is your relationship with that organ now?
Lynn: There is no known "cause" for fibromyalgia, but we do know that our central nervous system and our nerve endings may be chronically overstimulated. The brain is part of the central nervous system along with the spinal cord. I used to take my brain for granted, but now I believe it's the most complex and most important organ in the entire body.
My brain isn't working at 100 percent and I think that allows my fibromyalgia to "misbehave." I just think my brain isn't able to control my body as well as it used to. Bodily functions that used to be controlled subconsciously by my brain, such as letting me know whether I’m hot, cold, hungry, sad, or irritated are now on delay. I don’t feel them until it’s already too late and by then I’ve missed a meal, am too hot or too cold, or already crying or angry — all of which increase my pain.
HC: Where does your PTSD fit into all of this?
Lynn: Research shows that many people who get a traumatic brain injury may also get PTSD and that symptoms sometimes overlap. My brain injury makes me less able to deal with the chronic pain of fibromyalgia. It compulsively pushes me to panic when I have new pain and I feel like a fire alarm goes off.
I've had to develop and use many new coping skills. These include grounding, or keeping myself in the present, along with breathing techniques and meditation. I also use distraction — a highly interesting activity to take the mind off pain or discomfort. There's also compression, which is pressure applied evenly over a sore or painful area, along with soft braces, soft-gel ice packs, anti-inflammatory supplements, medications, and hyperbaric oxygen therapy. I use half a dozen kinds of mental-health therapy and physical therapy and I have the unconditional support of my priceless service dog.
Both my brain injury and PTSD cause insomnia and that, in turn, increases my pain level and decreases my cognitive ability, as research has shown. I talk slower, walk slower, and can't think of correct words as quickly. Each of these symptoms can vary from day to day, usually increasing or decreasing at the same time
HC: You really did not let all of this keep you from "moving." Tell us about that. Oh, and way to go!
Lynn: I work out almost every day and I love to walk. I do 30 to 60 minutes on the elliptical (cardio) machine, lifting 5 pound weights at 3 minute intervals. People seem shocked that I don't struggle with my weight, since I'm Italian and love to eat. I choose daily exercise and walking over riding as lifestyle choices.
Oh, and I do not diet. I figure I have enough to deal with so I don't like to deprive myself and don't want you to either. I wonder whether deprivation might lead to binging, so I let myself have a piece of chocolate cake once a week. Actually, who am I kidding? I have dessert every single day. Life is simply too short and chocolate is part of my balanced diet.
I was fiercely determined to heal after the bombing. I was never a runner but I began training in December 2013, after my doctor said my brain and back had recovered enough for me to do that safely. I still had daily chronic pain and panic attacks. I finished the 2014 Boston Marathon in 6.5 hours. Now I feel like I can do almost anything if I want it badly enough!
HC: What else is in your repertoire of self-care tips, Lynn?
Lynn: As I mentioned above, I do take some herbal supplements, under my doctor's supervision. Most of them have anti-inflammatory properties, such as turmeric and quercetin, along with omega-3s and CoQ10. I get massages, myofascial release, craniosacral therapy, and acupuncture and I take Epsom salt detox baths.
I personally have found that CBD (cannabidiol) hemp oil reduces inflammation and nausea, regulates my sleep cycles, and reduces my pain and anxiety. On my high-pain days, I sometimes use a micro-dose of a high CBD cannabis oil via vaporizer before I work out.
*(Note that CBD has not been approved by the Food and Drug Administration (FDA) as a treatment. Vaping may present respiratory risks.)
HC: Your calendar is full. Tell us what else you're doing now, which is a lot.
Lynn: Being a patient advocate is so important to me, giving me a sense of purpose. My daily struggle with chronic pain inspired me to volunteer as the Massachusetts Ambassador for the U.S. Pain Foundation and the advisory panel of the
former Massachusetts Resiliency Center, which provided free services for those impacted by the bombings. I am the director of medical marijuana advocacy for Leaftopia, a digital marketing company for marijuana. Living in Boston's Back Bay, I am very involved in local film projects, charities and social events every week.
My message is one of inspiration and hope. I fought my way out of that wheelchair, and I fought my way across that finish line. If I can do it, so can you.