Updated: Jan 19, 2019
Since I was a teenager I have lived with muscle pains and waves of fatigue that remained undiagnosed by medical professionals. I was always asked “Are you under a lot of stress in your life?” and then asked, “Do you have a therapist?” I spent half a lifetime believing my symptoms were all in my head and somehow learned how to live with it on an unhealthy dose of Ibuprofen, and isolation when it became unbearable. It had become “normal" for me to feel abnormal.
It wasn’t until the middle of 2014 when my symptoms worsened. I remember the day the alarms went off. I woke up with a heavier head, whilst my shoulders, neck and lower back burned and the tenderness throughout my body made it impossible for me to be touched. Sharp stabbing pains, mixed with electrical currents surging through the entirety of my body with a crippling fatigue that only a pot of coffee could and a few Motrin could kick start my day.
I remember going to the grocery store in what felt like an internal storm of pain and haze with a purpose and a list as the Motrin kicked in and the pain subsided. Yet I found myself walking in circles, standing in aisles, trying to remember what I was there for. Anxiety kicked in and after what seemed to be an eternity of trying to remember, I gave up. I went home and crawled into bed feeling confused and disappointed for not being able to accomplish such a simple task. So I lay there, reflecting on the experience and suddenly remembered...I had a list. I knew something was wrong.
The Great Symptom Chase
As I discussed my symptoms with my PCP, she referred me to a Rheumatologist and from there my life became a litany of blood tests, specialist after specialist, MRI’s, CAT Scans, then a positive ANA (antinuclear antibody) indicating that I had an autoimmune issue, and a false positive of Lupus. I was tested for Lyme’s. Negative. Maybe it's MS. Negative. Chronic Fatigue? “Not so sure about that.”, the doctor would say. I had to push and push to get him to agree to testing, with the end result being my Rheumatologist at the time flippantly saying, “ Let’s just call this Fibromyalgia.”
I didn’t quite trust that diagnosis yet I had to examine it. There is a lot of misinformation out there on what Fibromyalgia actually is. Why? Because no one really knows…It’s trial and error for treatment and no real understanding of where it stems from. There are ongoing studies trying to determine its origins, and how to effectively treat it. According to the Mayo Clinic’s overview, “Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues.” It continues on with “Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.”.
The more research I did the more confusing it became because Fibromyalgia mirrors many disorders. My life had become a relentless unwavering commitment to finding the answers that most of the medical professionals I worked with had given up on.
Although the fatigue and pain still existed it became normal a part of my everyday existence that I somehow managed. I tried medications like Cymbalata that initially worked for the pain but the rest of my life became a mess. The negative side affects of that drug far outweighed the pain relief.
It wasn’t until February of 2018, that I had another alarming episode and this time I just couldn’t get out of bed at all and my entire body was so tender to touch that I couldn’t withstand a hug from my son. . I was referred to a different Rheumatologist and after more blood work and testing I returned to her office and received a firm diagnosis. “You have Fibromyalgia.” Her diagnosis came with explanation and an attempt to clarify the inconsistent schools of thoughts in the disorder. She was a lead Rheumatologist and a professor at RUSH Medical in Chicago. Her specialty was Fibromyalgia. I felt I could trust her. It wasn’t just a flippant guess. She spent her life researching and teaching about the complexities of the disorder and researching ways to provide relief. She explained the intensity of my symptoms is what is called a "flare-up". I could feel a release of tension I seemingly held on to for the years of trying to find the answer . I' could feel the relief of validation that there was something really going on, and it wasn’t all in my head. I remember feeling hopeful and asking when I would feel like myself again, until I heard, “There is no cure and there is no way to determine when you will feel better or when you will get back to your old self.”
Hearing that there was nothing she or I could do except ride it out, and experiment with different medications, a heaviness moved through me and began to penetrate every ounce of my being. My life as a whole disassembled in that one moment. The hope I held in finding an answer that would provide me relief disintegrated.
researched everything I could about the disorder and most importantly, how could I heal myself. There were articles after article on the mystery being solved. Its not… I found scientific studies that confused me One school of thought is, “It’s all in your head”. Another school of thought is “It’s inflammation of the brain” The American Pain Society has an article entitled “Fibromyalgia Has Central Nervous System Origins”. “Fibromyalgia can be thought of both as a discreet disease and also as a final common pathway of pain centralization and chronification. Most people with this condition have lifelong histories of chronic pain throughout their bodies,” said Clauw. “The condition can be hard to diagnose if one isn’t familiar with classic symptoms because there isn’t a single cause and no outward signs.” It’s an interesting and informative read, (link below) yet there are still so many questions. All of the research I had done didn’t bring me any closer to the truth and it seemed I was on a trail to nowhere.
So… What does one do?
I knew I had to accept this diagnosis yet I refused to accept the quality of life that was presented to me. The old model of thinking and researching my way out of this wasn’t going to work. I had to make change and come to terms with this being a condition I couldn’t think my way out of. I had to exercise some muscles I hadn’t used in a while; acceptance, trusting and allowing the process. I had to learn how to really listen to my body and accept my diagnosis. You see, sometimes my body says “Hey! I’m all good, lets go for a run! Call a few friends. Lets do a deep clean of the home, and make a 3 course meal!” And my brain says, “YES! We are back! Let’s do it!” I have a great day! I feel accomplished. I was there for my family and friends. I was there for myself. I feel satisfied because I achieved all the goals I set out for myself. Until I wake the next morning. I can’t move for four days. I’m stiff and stuck in a "fibro fog”. This is an example of listening to my body but not accepting my diagnosis. It’s about balance. Knowing and accepting that if I chose to do all of that in one day I will pay a heavy price for it later.
So, now, when I feel good, I create that list I would usually dive into without having to think twice about; I stop. I listen to my body while acknowledging my condition. I pick one or two things off the list that I can do today and make that list my old self could accomplish in a day, my goals for the week.
This difference between now and the beginning of my journey is I stopped resisting the crashes and the quality of my life improved significantly. I began to connect and engage with others garnering support online and my personal life with others who had similar experiences. I started to employ the motto “It is ok to not be ok.” And with that, oddly, everything really was ok. The anxiety subsided. I discovered new tools to deal with a flare up. Massage, meditation, stretching my body and acupuncture had become staples of my life. I systematically started to remove the unnecessary stressors in my life, making rest and solitude a priority. And at times, that beautiful flow of creativity, laughter and productivity come back and I feel renewed. In honesty it’s a bit of a rollercoaster.
Fibromyalgia as with any chronic illness is not an easy journey. Yet, if you can find the courage to be in the truth of your condition and share your experiences with others, you may discover new tools that help the complexities of symptoms and the hidden struggle may subside.
You Are Not Alone
I See You
Everyone Is Healing
American Pain Society: http://americanpainsociety.org/about-us/press-room/fibromyalgia-clauw