If you or someone close to you has fibromyalgia, there is hope. You do not have to live with the pain and exhaustion. Learn how you can heal yourself by reading Heidi’s story. You can live a full and “normal” life, but heck, who wants to be normal? Be extraordinary! 🙂
I first met Heidi in 2005 at a healer exchange. I had just completed my studies in Chinese Reflexology and attended this event to share what I had learned with other healers. Participants paired up to give healing sessions to one another. Heidi and I connected and I gave her a Chinese reflexology session.
Heidi had been suffering from fibromyalgia for years. She was very attuned to her body and said that she could feel energy moving as I massaged her feet. She was inspired to learn Chinese reflexology and very quickly, we became friends. We’ve witnessed each other’s growth, expansion and the realization of following our passions. Today, Heidi is free from chronic pain and living a “normal” life. As her friend, I can attest that she’s living an extraordinary life. She is a gifted ceramic artist, avid kayaker and Tai Chi instructor.
Many people have asked me about the efficacy of Chinese Reflexology for fibromyalgia. Having known Heidi before and after her recovery, I asked her what she thought since she also studied Chinese Reflexology and practiced on herself regularly.
She shared with me that she uses reflexology to manage conditions associated with her fibromyalgia, but that there were other healing modalities that had a bigger impact on turning her fibromyalgia around. She wanted to share her story to inspire others suffering from fibromyalgia and help them find their path to healing. Here’s Heidi’s story:
Holly: When did you first begin experiencing fibromyalgia symptoms?
Heidi: When I was 16, the day before my final year of high school, something happened in my body. I remember feeling distinctly like something was “wrong” but I couldn’t put my finger on it.
Soon after I realized that I had lost my ability to remember things, not only that, I had become somewhat dyslexic: I could look at words but they didn’t make sense. I was, up until that moment, a super-achiever A++ student with tons of energy.
Suddenly, I was tired all the time. It wasn’t until I started university two years later that the aches and pains, tenderness and increasing high-intensity chronic pain, coupled with extreme exhaustion set in.
Eventually the fatigue subsided, but the pain was getting worse and worse in my upper body especially. By the age of 30, I would describe this pain as “screaming” and I had a hard time finding a bra that I could tolerate the pressure of on my skin.
By 35, I was at the “abject chronic pain” stage and it was sometimes impossible to focus at work. I was working high-stress fundraising jobs and I was becoming more and more bleak about my prospects of living a full life in chronic pain.
Holly: What did the doctors tell you about your illness?
Heidi: Originally I was diagnosed with depression, put on anti-depressants, and felt even more foggy, slow and removed from the real world. Then, when I bounced back, I was deemed “hyper” and diagnosed with bipolar disease and put on lithium. All this before the age of 19. (For the record, I went off lithium a few years before I started my healing journey, and I AM NOT bipolar – whatsoever).
Then Canadian Living Magazine published an article about something called Chronic Fatigue Syndrome and I got in with the leading specialist in this “new” disease. She promptly diagnosed me.
Having a medical practitioner offer a concrete diagnosis felt like a relief because finally someone in the medical establishment was taking me seriously and not trying to tell me that the pain was all in my head and that I had emotional or psychological issues.
I had subsequent diagnoses from rheumatologists in the early years, but there was never any real solution on the table. It was mega-dose anti-inflammatories, low-dose tetracycline anti-depressants to help with restorative sleep, and lots and lots of tiger balm to numb the pain. I had one specialist tell me at 22, “You’ve got the body of an 80-year old. Deal with it.”
In 2003, just before the major turning point in my illness-recovery trajectory, at wits end, my general practitioner (an amazing woman who has supported me through this for over two decades) referred me to an internal medicine specialist who booked a battery of tests for me – like EVERY type of scan, blood test, x-ray imaginable.
The upshot was – I have brittle bones and will likely end up with bunions. I didn’t realize at the time, but this was an important clue that ultimately unraveled my chronic pain riddle.
The other piece of the puzzle, which is atypical, but important for me, is that I started to develop other high-intensity chronic pain symptoms in my mid-back and sometimes in my groin area in my mid twenties. This went on for some time. The pain was dismissed as relating to endometriosis.
Again, more specialists. Amazingly, in what I can only describe looking back as a moment of grace, I ran into one specialist on a subway train in Toronto randomly. I wasn’t going to even bother him, but HE initiated, and asked me if I was still having “that pain.”
When I confirmed that I was, he had me follow him to his office and did an IVP test on a hunch, that revealed an eleven millimeter kidney stone in my right kidney. I was eventually diagnosed with Medular Sponge Kidney disease, and have been managing chronic kidney stones with Chinese reflexology ever since.
Holly: What was your darkest moment when it came to the fibromyalgia?
Heidi: I can’t isolate one darkest point. There were three in my mind:
I tried to kill myself when I was a teenager. I nearly jumped off a bridge in the middle of winter in despair.
I remember as a new graduate from the University of Toronto, renting a place with friends and trying to start my life, but having to rest in bed during the day with two heating pads on my body, slathered in tiger balm, and sobbing because I realized I would have to move because I couldn’t rest enough when the person renting the upstairs apartment was giving piano lessons after school. I knew that my demands were not normal and I felt in that moment I was always going to be disabled.
Shortly thereafter, with the kidneys in great distress, my other organs followed suit, and my body just started to deteriorate. I lost 35 lbs (I was 5’8” and weighed less than 100lbs) and I literally started to lose my mind. I was hospitalized, and at a certain point went into a coma.
I knew I could have “left” this world, but something called me back. Some profound knowingness that I had an important purpose yet to fulfill in my life.
Holly: When did you start getting better? What changed?
Heidi: In the late 1980’s there was a support group for university students in the Greater Toronto Area suffering from M.E. (myalgic encephalomyelitis). Having others with whom I could relate and understood me, and starting to have tools to track and turn the table on controlling rather than being controlled by the disease was very helpful. The founder of that group has become a life-long friend.
It turns out that the brittle bones and the chronic kidney stones were indicators of my body’s inability to process or filter out calcium phosphates. Many people with fibromyalgia are missing the enzyme that enables the flushing of calcium, and consequently have indicators like mine: brittle ridged finger nails, and perfect teeth – i.e. no cavities whatsoever because your body retains so much calcium.
My GP had been urging me for years to take some time off work for restorative purposes. I had resisted. In fact I had NEVER told anyone in my work setting that there was anything wrong with me for fear of the stigma. Chronic pain is invisible and I relied on its secretive nature on a daily basis.
By the spring of 2003, I could no longer go on. I felt at the end, possibly at the end of my life. I estimate that 80-90% of my waking hours I was in unbearable pain in my chest and my back – pain that was many times worse than the pain of passing a kidney stone. I took three months off work, and turned a page in my life.
Holly: You’ve told me about a few aha moments in your life that were pivotal for transforming your health. Could you please share some of these and how they impacted your life?
Heidi: When I took that 3-month break, my husband happened upon a book, What Your Doctor May Not Tell You About Fibromyalgia by Dr. R. Paul St. Amand. The book read like a cartography of my body. He was offering a solution – a compound made from a tree-bark that would enable your body to create the missing enzyme to flush out calcium.
It was experimental and not clinically approved by the medical profession. My GP agreed to monitor me through this and I went on the Guaifenesin protocol. The axiom was that for every year you were ill, it would take two months to reverse. I had been ill for 17 years, and it took exactly 34 months before I felt “free” of chronic fibromyalgia.
I believe whole-heartedly that healing is not all done on a physical plane. One of the most healing things in my life was finding my true calling. I am one of those people “cursed” with being able to do pretty much anything I set my mind to. Having that many choices in front of me was always difficult, if not paralyzing.
I had found myself moving from job to job, always working to support the arts industry, but always as a manager, producer and strategic planning person. Parallel to my healing journey, I was seeing a life-coach, and I realized that I needed to bring creativity into my life in a meaningful way.
Again, in a moment of grace, my parents who were downsizing from their home to a condo, found a school paper I wrote when I was ten years old entitled “What I Want to Be When I Grow Up” – and it was a potter!!!! I was so stunned when I saw that paper. I had completely forgotten, and it was as if a bolt of lightening shot through my soul saying with a huge “AHA” moment that this is what I’m meant to be, that working with clay is what’s written into my DNA.
It goes without saying that I decided to allow that truth into my life, and the doors to make it happen just opened up wide in front of me. My clients (I was a strategic planning and fundraising consultant at the time) all encouraged me to take four months off and I went to India to apprentice with a potter my husband had known in his youth.
I subsequently went back to school for formal training and have just received my Master of Fine Arts, and am setting up my sculptural practice full-time. My work comes from a deep experiential place of empathy and reflects the type of transcendence I feel I have been granted in this lifetime.
Holly: What activities do you do now that you once thought were impossible because of the fibromyalgia?
Heidi: I am an avid kayaker. I kayak at least twice a week during the summer months and have been on wilderness kayak treks, clocking 100km+ in six days. I am also an avid Tai Chi and Qi Gong enthusiast. I credit Qi Gong in large part to my recovery and my sustained virtually pain-free life.
I can also go out in the evenings and have a social life and last spring, I travelled in Asia for 5 months, working 8-10 hour days in the studio in China and Indonesia. The physical work of throwing on a potter’s wheel is something I could never have imagined doing with fibromyalgia, and now it is the most freeing activity for me in the world.
Holly: How long have you been in remission? What do you do to keep symptoms in check?
Heidi: I have been in remission for more or less a decade. I still have a weaker immune system than most, and I have to monitor myself not to overdo, which is tempting because I feel “normal.” I continue with the Guaifenesin protocol and I do Qi Gong every single day, even if it’s only for five minutes.
The Chinese reflexology keeps my kidney condition in check. I also try to meditate routinely, and I have done some of Donna Eden’s Energy Medicine workshops, and incorporate what are basic acupressure hook-ups into my daily wellness routine, that is now coupled with physio and other core strengthening exercises to enable my body to do the work of being a ceramic artist.
Holly: What do you feel are the top three things that have made the biggest difference in overcoming fibromyalgia in your life?
Heidi: The Guaifenesin protocol, Qi Gong, and following my true calling.
Holly: What advice would you give to someone who has fibromyalgia and wants to reclaim their health?
Heidi: Not everyone with fibromyalgia has a calcium imbalance or issue. It’s a complex syndrome that manifests in many ways. I would urge people to try to move a little “through” the pain regardless of your despair, and you will despair.
I would suggest trying Tai Chi and Qi Gong or yoga if it is something gentle that you enjoy. With YouTube and DVD’s if you can’t get to a class, you can do this at home.
I would also suggest finding a support group. Knowing you are not alone is empowering. Also finding support and counseling for your spouse is extremely important. I think it’s often overlooked how incredibly difficult living with someone in chronic pain can be.
The other thing I would do if I had severe fibromyalgia now, is to declare it to your close friends. People need to know, but then to offer them some basic literature to validate your disease and to listen to your own sense of comfort in terms of asking them for their discretion.
Twenty-five years ago, it was virtually a crime to have an invisible chronic pain disease. It was equated with weakness and psychological disorder. Today it is a well-known and all too pervasive condition. Speak out, reach out, and allow yourself the possibility to be healed.
More About Heidi
Heidi McKenzie is ceramic artist and recent MFA graduate of OCADU. No stranger to the arts, Heidi has over twenty years’ experience as a manager in the non-for-profit arts sector. She continues to practice as a freelance arts journalist.
In 2009, Heidi returned to her father’s ancestral home and embarked on a three-month residency in India. Her studio practice addresses the role and responsibility of community in healing and notions of identity and belonging.
Much of her abstract representation depicts self-portraiture documenting her own 20-year journey of healing through fibromyalgia.
The beautiful works of art you see throughout this article are Heidi’s creations. You can view more of her work or even purchase or commission your own piece at www.HeidiMckenzie.ca.
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