I can’t get out of bed this morning. Again. My whole body is wracked with pain. I feel invaded. Vilified. I don’t know what is happening to me or why.

I spent months not knowing how great the pain would be or what caused it. We had just moved from Britain to a small town in British Columbia. It was the dead of winter and I thought I was dying.

Over the next four years, I experienced a steep, often circuitous, learning curve. Eventually I grew to understand, accept, and manage my illness - fibromyalgia syndrome (FMS), which poses a labyrinth of challenges to patients seeking adequate treatment. I share my story in hope that others can avoid some of these pitfalls.

What is Fibromyalgia?

Fifteen per cent of Canadians suffer with fibromyalgia, the main symptom of which is chronic pain. FMS is increasing among women. Yet the average person and health care provider don’t understand the illness or how to treat it.

Fibromyalgia is a syndrome, meaning that it is a cluster of symptoms. FMS is often triggered by trauma, such as surgery or an accident, especially one with whiplash injuries, or by long-term stress, such as overwork.

Accompanying symptoms can be extensive, varying from individual to individual. Symptoms include dizziness, fatigue, carpal tunnel syndrome, "brain fog," short-term memory loss, organ and glandular dysfunction, myofascial (connective tissue) pain, disorientation, difficulty breathing, and more.

Tests and Treatments

It is important to work with health care partners who are familiar with FMS. Heather Marinacchio, ND, of Courtenay, BC, and Garret Swetlikoff, ND, of Kelowna, have each been treating FMS for more than 15 years. Marinacchio, for example, uses a systemic approach that harmonizes with the person’s belief system to encourage healing.

People with FMS should practise self-responsibility, noting and charting symptoms and triggers. But what works with one person may not work with another. Extensive history and lifestyle is examined.

Depending on the symptoms, everything from gluten allergies to adrenal and thyroid dysfunction and cellular activity can be studied. According to Swetlikoff, "There is no single protocol. We take a multi-factorial approach and build a protocol over time, adding and deleting accordingly."

One method of objective testing for FMS is the "Trigger Point Test." Many people with FMS will have pain in 11 of the 18 trigger points when pressure is applied. The test is a good starting point for diagnosis. You must continue as a proactive partner in your own health care.

Research Support and Emotional Wellness

Books, the Internet, and friends are potential sources to provide insight into FMS. Early on, I was in denial, refusing to accept that this could happen to me, a very physical and highly capable person. Through networking, I discovered that other people with FMS go through similar emotions, eventually coming to acceptance.

Support is paramount. My partner reads my books, practises therapeutic massage, accompanies me to appointments, and assumes duties I cannot.

Physical and Spiritual Practise

As I began to feel better, I regained hope. My optimism, energy level, and physical ability began to shift. I resumed some of my responsibilities. I returned to exercise, starting with basic yoga, and then walking. Eventually I added light weights, which built stamina and strength. Meditation, visualization, affirmations, and inspirational reading helped me move to a deeper understanding of my illness. I learned to ask: What does my illness reveal to me? Certainly, slow down and don’t overextend, but also, look after myself and others, explore my spirituality, connect with nature, and practise mindfulness.

Through trial and error, I’ve discovered that A.L. Gittleman’s Complete Fat Flush Program (McGraw-Hill, 2002) best manages my FMS symptoms, hormonal balance, and thyroid-induced weight fluctuations. Basically, Gittleman suggests:

Jan Gregor was diagnosed with FMS in 1999. She continues to research, write, and educate others about FMS.

Source: alive #256, February 2004