As with most creative people, I have a vivid, very active imagination. I am aware that I have the capacity to feel things very differently and much deeper than the average person. And I have always been told that these are both beautiful gifts to have. But could this pain really be all in my head? Am I truly imagining all of this? I suppose I would be a wealthy woman if I had a dollar for every doctor that told me so. I would be living in Costa Rica surfing everyday and working in my juice bar. But I am not and I am here and my pain is real.
I’ll scream it from the rooftops if I have to.
I was officially diagnosed with Fibromyalgia about twelve years ago. The process went something like this. I waited 8 months for an appointment with a renowned expert/rheumatologist. On the day of the appointment, I waited for three hours to see him. I went in for a 10-minute exam, with very little dialogue. And I left with a prescription for a powerful, incredibly addictive painkiller, as well as a follow-up appointment for a year and a half later. That experience and “diagnosis”, while it gave a name to my incapacitating pain and gave me a brief sense of relief, was as mysterious as the disorder itself. According to the Fibro Center, “Fibromyalgia is thought to be the result of overactive nerves that cause chronic widespread muscle pain.” FMS can also be accompanied by debilitating chronic fatigue, joint stiffness, sleep disorders, mood issues, food sensitivities, and cognitive dysfunction. What researchers are beginning to understand is that people suffering from FMS are potentially much more sensitive to pain due to differences in the way their brain processes actual pain signals. FMS has received a bit of a bad wrap over the years, as it can be really challenging to diagnose. Some doctors believe, others don’t.
The beautiful Iyanla Vanzant says PAIN is the call to: “Pay. Attention. Inward. Now.”
Well, I can say loud and clear that I have been looking inward for a very, very long time. I refer to it as a journey. My wellness journey. And I have been traveling, non-stop. Along the way I have done some life-altering soul searching, have investigated my past with a fine tooth comb for hidden traumas and for possible instigators, have uncovered layers of stored emotion and hurt, and have figured out ways with my therapist to dig even deeper. Would any of this life building stuff have happened had I not suffered from chronic pain? I truly doubt it. And my big question as of late is: WHY spend our time here, in this body, with these people, in this place, in this moment, just living a surface existence.
Let us answer the call, in whatever form that it may come in, to dig deep!
When I began searching for answers of how this pain and diagnosis came to be, I recognized that there was a clear pattern of trauma, a known possible catalyst for the onset of symptoms. Growing up I had severe, debilitating bone spurs in both of my feet, which progressed throughout high school, most likely due to my years as a gymnast and athlete. Along with the bone spurs, I was diagnosed with plantar fasciitis and tarsal tunnel syndrome. I started with regular physical therapy and continued to be extremely active. After I graduated college I decided that I couldn’t bear the pain any longer. I embarked on a multi-year treatment plan that included five surgeries, multiple casts, endless physical therapy, cortisone injections, orthotics, more physical therapy, hypnosis, pain medication, and ultimately a membership to the pain clinic at The New England Baptist Hospital where I had nerve blocks every two weeks for six months. I was in a wheelchair for months. Immobile. Still in pain. And deeply, deeply depressed. DEFEATED. None of the aforementioned treatments had worked. In fact, they had simply created more scar tissue, thus making the pain even worse than before. As I mentioned earlier, trauma or severe illness can in some cases be a possible precursor to FMS. I suppose this experience was my trauma.
It wasn’t an instant shift, but instead came on gradually, over a period of a few months. Eventually my pain was widespread throughout my entire body. I had achy muscles, joints, unbearable stiffness, and pain that would “travel” around to different limbs. Sometimes it was throbbing and sharp, but it was always constant. I had always had difficulty sleeping, but I became a full fledged insomniac due to the pain keeping me up at night, which turned everything into a vicious cycle since the important time when muscles heal and restore was completely eliminated. My digestive system became highly sensitive and I began to have severe intolerances to gluten, dairy, and sugar. I was quite dizzy, what I now know is referred to as the “fibro fog”. To sum it up, I felt like I had the flu, mono, and severe arthritis at the same time, all the time. This is how I learned to explain it to my friends and family who were confused by my complaints because FMS sufferers look completely healthy. I couldn’t get out of bed for weeks and eventually I had to quit my job and move home with my parents to try and find some answers.
My first stop of many was to my primary care doctor, who suggested therapy. Of the mental kind. My next stop was a different primary care who suggested an antidepressant and therapy, and it goes on and on from there. I was told multiple times that “it’s all in your head. You should really just try and relax.” As Starlanyl and Copeland, authors of the book Fibromyalgia and Chronic Myofascial Pain state, “There is no excuse for doctors “not believing” in its reality. If your doctor “doesn’t believe in FMS,” you are going to the wrong doctor.” The problem and frustration for people is that it can take a really long time to find the right specialist. I did finally find a primary care doctor in an integrative medicine office who took me seriously. In order to come to a diagnosis of FMS, you must first rule everything else with similar symptoms out. And there are many, many diseases with similar symptoms. So I began a battery of tests for Lyme disease, Lupus, Rheumatoid Arthritis, viral infections, and possible hormonal and thyroid imbalances. Each was done many, many times since tests can come back misleading. All negative. We continued with additional testing for candida and fungal overgrowths, food allergies, the Epstein Barr virus, vitamin D levels, and to see how my adrenals were functioning. Epstein Barr came back positive, but dormant, a reminder of my charming bout of mono in college and my vitamin D levels were on the low side, not an uncommon result from living in the Northeast. She ultimately suggested that I see a local rheumatologist who had been focusing on Fibromyalgia. Things were looking up. I was one step closer to finding an answer. In reality, she was really leading me to another dead end.
Or was she?
I made the appointment knowing that I would have to wait for 8 months to see him. Finally, when that visit and diagnosis came, I felt a brief sense of relief. Like so many others can relate to, it can be comforting to finally put a name to what I was feeling. But once that settled in a bit, I realized it was just a name, with no solutions. I did need more answers. How did it start? What could I do to make myself feel better? How could I get my life back? And in an ideal situation, what were the most natural treatments available? The official diagnosis was truly the catalyst that I needed to take things into my own hands. After many months of dead-ends, and yes, therapy, I decided to switch gears and pursue an approach that was in complete alignment with the lifestyle that I had already slowly been shifting towards.
Step one: Embrace the challenge.
At a bookstore one day I continued my own endless research and dove deeper into the world of alternative medicine. I instantly made an appointment with an acupuncturist, along with a massage therapist, thus beginning the slow and steady road to healing.
As soon as I started incorporating regular massage into my treatment, my pain patterns began to shift. Initially I simply used massage as a stress reducer. I thought of it as good self-care prior to realizing that it would become a major part of my treatment plan. Those years that I had spent searching for answers had left me emotionally and physically exhausted. But over the months, and in conjunction with other therapies, massage became my form of physical therapy. It was the start of my positive cycle of healing. After massage my muscles felt more flexible and stiffness was reduced significantly, which allowed me to start incorporating some light yoga into my days, which helped me sleep more soundly, which gave me more energy the next day, which allowed me to exercise a bit more, and so on and so on. The healing cycle began to get some momentum. Along with massage, I did a total revamp of my diet, cutting out dairy, gluten, and sugar, adding in organic, whole foods and green juices. Some other imperative aspects of my self-care routine began to include more intensive daily exercise, meditation and breathwork. I now round it all out with a little acupuncture, craniosacral therapy, and yoga. Sleep is such an enormous piece of my wellness program and with the help of some homeopathic remedies I do find that it is improving. I work really hard at keeping my stress levels down, being especially mindful not to overextend myself.
Each case of chronic pain is unique and can manifest itself in various ways. Symptoms can vary depending on weather, climate, time of day, stress levels, physical activity levels, food allergies, amount of sleep, and even hormonally in women. For me, these factors have lead to some relapses over the years. As I sit and write this, I am at the tail end of one. The weather has been raw and rainy. My stress levels have been through the roof due to finishing one intensive program, while starting another. I had started to skip out on my breathwork and meditation. As always I was drinking my nourishing green smoothies and juices, but I wasn’t truly listening. My body was telling me that it needed quiet. To find peace. To rest and reflect. While they can be frustrating, these relapses are becoming more rare, less intense, and shorter in duration. And they are also a tremendous opportunity to become even more in tune with my body. When you don’t listen, your body will find a way to tell you, even if it has to scream. The key I’ve found to managing my FMS symptoms is consistency. It has turned out to be quite an interesting journey and today, even in a relapse, I am in a place where I can finally say that I wouldn’t change it for anything. Without these experiences and incredible knowledge, I most likely would not have landed in this place - loving my career in holistic nutrition and wellness, and spreading the word that it is 100% possible to take back control of your health.
The ultimate message:
Embrace/Accept: Embrace your current situation. “Ok, this is. What can I do?” Accept the journey you are on. You are embarking on it for very good reasons, which may not make themselves fully clear for quite a while.
Investigate/Learn: Investigate your ideal healing methods. Learn everything you can. Become the expert.
Absorb: Absorb your experiences and knowledge, knowing that they will only make you stronger. Put all that healing into motion/action. And treat yourself like the temple you are.
Re-empower yourself: You, and only you, are in charge of your own healing. You are your wellness warrior.
Share: Share your knowledge with someone else who is in need.