Abstract

Summary: This article examines what is known about fibromyalgia syndrome (FMS), a chronic and debilitating illness that currently cannot be cured. Contemporary research is used to present a comprehensive picture of FMS, including the ways it may affect the sufferer. A personal experience of the illness is discussed, illustrating the use of psychological self-coaching techniques in maintaining optimum health and functioning. A practical use of cognitive-behavioral techniques is presented, from a self-coaching perspective. The importance of metacognition, cognitive distortion, and daily thought records are integrated into a practical model for improving wellbeing and coping mechanisms.
Keywords: Fibromyalgia syndrome, FMS, central sensitivity syndromes, chronic pain and fatigue, self-coaching, cognitive-behavioral techniques, psychological coaching, metacognition, lifestyle processes, thinking processes, cognitive distortions, daily thought records.
Citation: Hide T. Using self-coaching to improve life with fibromyalgia. J Participat Med. 2012 Sept 24; 4:e21.
Published: September 24, 2012.
Competing Interests: The author has declared that no competing interests exist.

Introduction

In 2008 I was diagnosed with fibromyalgia syndrome (FMS). This can be a painful, frightening, and debilitating illness, for which there is no known cure and few treatments. Attitude and lifestyle play a major role in the lived experience of the condition. I am writing about my own experience with FMS in order to illustrate how I have used my training in cognitive-behavioral coaching to cope with this condition and maintain my quality of life. I use the term “‘self-coaching” to describe how I have used the cognitive-behavioral and psychological coaching techniques that I would normally use with leaders in development of coaching, to improve my own lived experience of my illness. I explain several principles of cognitive-behavioral and psychological coaching and then describe how I have turned these “inward,” to change the way I think, feel, and live with my illness.

Fibromyalgia Syndrome

Fibromyalgia is defined as a “syndrome” — a collection of symptoms and indicators making up the illness, which sufferers may experience to varying degrees. Persistent pain and fatigue are the most common symptoms, but other reported symptoms may include unrefreshing sleep, morning stiffness, problems with concentration and memory, reduced attention span, irritable bowel and bladder symptoms (IBS), frequent headaches, low blood pressure and dizziness on standing, ease in bruising, bruxism (teeth grinding), restless leg syndrome, and sensitivity to loud noises. People with FMS often describe feeling as if they have flu all the time, with profound muscle pain, achiness, and fatigue, and which is exacerbated by physical exertion.[1][2][3][4][5]

My Story

In 2005 I was involved in a motor vehicle accident. I sustained a neck injury, with associated arm and shoulder pain. I learned later that many FMS sufferers develop the illness following a car accident, particularly those involving neck injuries, though this remains controversial[6] and other forms of trauma have been implicated too.[5]

Later that year, I was lacking enthusiasm and energy to get up for work, which I attributed to needing a job change. I was still experiencing pain from the accident and gained a promotion later that year, but my excitement for work and life was absent. Over the next two years I began to experience more pain in other parts of my body and found I was always so tired that my social life was deteriorating.

However, I always found a way to explain away my experiences — I was a working mother, studying and working long hours; perhaps I had overstretched a muscle at the gym, had sat awkwardly for a long journey in the car, or had changed my posture due to the neck injury. I found I was pulling away from friends and colleagues, which I explained away because of studying; however, I also found that my concentration was becoming severely affected towards the end of my masters program and I lost the joy I had experienced from my studies previously.

As a mental health nurse (RMN) at the beginning of my career, I am aware that some of my symptoms could be due to depression. However, at the time I did not experience a low mood. In July, 2008 I was diagnosed with FMS. My physician told me that there were limited treatment options. He recommended an exercise program and provided me with an information brochure about fibromyalgia, but he offered no other help.

Learning to Live Life Well

I joined online groups and spoke to other sufferers locally through the strong fibromyalgia support group in my area. Very quickly I began to realize I had reduced my life to its barest minimum — work and rest, with almost no social life. I had stopped going to the gym because it had become too painful. I was irritable with my family and showing stress readily.
I decided to begin an exercise program, but I was ignorant of the kind of exercise that was appropriate and returned to my previous gym activities. This triggered a major flareup of my illness and left me at my lowest point. For the next two weeks, I experienced the most excruciating pain I have ever felt. I was unable to walk, climb stairs, or drive. I had never experienced such a sense of utter desperation, and a need to reduce the terrible pain. My doctor had very little knowledge of how to support me or to lessen the pain.

I was reluctant to consider anything that might cause another flareup and began avoiding things that might trigger it. Coping with the constant daily fatigue and pain took all of my resources and I stopped seeing friends, going out socially, staying up beyond early evening, or even wearing high-heeled shoes (which I love) in case they caused me greater pain and illness. I felt my life would never be the same, and that my hopes and dreams would never come to fruition.

“You feel the way you think; you are not your thoughts”

In many ways, the withdrawal from life for a short period gave me some much-needed thinking and reflecting time. From my coaching training, I realized I could significantly influence my lived experience of the FMS by applying the techniques of cognitive behavioral therapy and coaching (CBT/CBC) to my own situation. Cognitive behavioral techniques are those which relate to emotional rather than physical wellbeing and which deal with cognitive “blocks” to development and achievement. As such, they are credible, effective techniques both in therapeutic and professional development contexts.

Emotions are heavily attached to chronic illness and one’s outlook on life is widely known to affect prognosis. I knew that if I could learn to think in a different way, I could change my outlook on my illness and, hopefully, my experience with it. Cognitive behavioral techniques use principles of positive psychology in achieving this — not in facilitating a falsely positive outlook on life, but in creating a sense of reality and perspective in a given context.

Examining thinking is the first step towards changing it and, therefore, feeling differently. From my training, I knew I would have to step back and work to examine my own thinking, an important aspect of recognizing my thought processes and internal “self-talk.” Increasing “metacognitive awareness” — thinking about thinking — enables us to come to some conclusions about the ways we think and ”self-talk.” This facilitates development of alternative thinking and perspectives.[7] Writing a thought record was a simple but effective approach which allowed me to achieve metacognitive awareness and helped me begin to address negative thought patterns that were affecting my feelings and experiences. This technique involved documenting my thoughts as they happened, across a five-column plan (Table 1).[7]

Table 1: A Real-Life Example of My Thought Record in Living with Fibromyalgia. Adapted from Daily Thought Record, Centre for Stress Management.[8]

In using the thought record it was essential for me to use the final column to record realistic thinking about the situation. For example, it would be detrimental for me to expect to find a cure for my illness or to become totally well again. I would only be setting myself up for failure, perpetuating the cycle of negative thoughts and their associated negative feelings — all of which are likely to perpetuate my symptoms. Realistic thoughts are far more likely to alter my regular thinking processes, convert my feelings from sadness and fear to realization of what is achievable, and to bring about greater acceptance that my situation is not completely negative.

Negative Automatic Thoughts, Cognitive Distortions and Self-Help Experiments

Negative Automatic Thoughts (NATs) are those thoughts that will be automatically generated when events happen that trigger our deep, core beliefs — when our “buttons are pushed.” I may have a core belief that if I can’t do everything independently, then I’m not a “successful” person. If every time I need to ask for help because of my illness, this core belief is activated, my resulting NATs will be negative and so will how I feel. After examining my own thinking, I began to realize that I was experiencing many NATs. Qualified cognitive behavioral coaches or therapists can use a range of techniques for modifying automatic thoughts, which may involve a thought record using questioning to measure reactions and the outcomes of alternative ways of thinking.[7][8] I used self-questioning (coaching), to examine my own thinking and create an alternative “self-talk.”

Another technique I used to create alternative ways of thinking was to investigate “cognitive distortions.” These are thinking processes that skew the way I think and feel, such as “all or nothing thinking;” for example, “I am ill, so I will never be well enough to do anything again.” Magnification: “I felt too ill to do the gardening today, so I’ll never have a nice garden again.” Mind reading: “I look well even though I feel ill, so everyone must think I’m pretending to feel bad.” Discounting the positive: “I may have been able to achieve some of the lighter gardening, but because I couldn’t do it all, it’s of no use at all.[7][8]”

Self-help experiments were a useful way for me to challenge these cognitive distortions. If I became aware of a tendency for mind reading, I might test out whether people understand that I feel unwell even if I look well, by asking them, sharing how I feel with them and noting their reaction. This way of thinking was a very real problem for me, resulting in my attempting to hide my symptoms from others. Self-help experiments require a level of courage and understanding that not everything we try will have a positive outcome. Coaches and therapists will help to support individuals to investigate what works for them and to accept that we may need to try several options before we find a solution.

My own solutions have been a journey of trial and error, as with all people attempting to unlock their potential with psychological techniques. As I write this, I am able to carry on working in a job that I love because I rest in bed during evenings and weekends. I may eat, study, and spend lengthy periods in bed compared with other people, but this enables me to tolerate my pain and fatigue levels, and to live other areas of my life with more joy and motivation. I am able to go to concerts, parties, and social events because I plan ahead and factor in rest periods before and after. I exercise only in ways that suit me and ensure my ongoing fitness without causing increased pain and fatigue. I work with a combination of these lifestyle changes along with treatments such as medication, to ensure that I stay as well as possible.

All of these solutions have come as a result of experimentation, and following cognitive-behavioural processes to increase my “metacognitive awareness.” While this does not cure my illness, it helps to frees me from sadness, anxiety, fear and depression that will exacerbate my symptoms and place a negative perspective on my life. In turn, it improves the vision of reality — emphasising those things I can do and offering creativity in finding ways to achieve the things that are important to me. There are no quick fixes and ongoing practice, self-monitoring, and self-help experimentation are required.

Once the rudiments of thinking realistically and therefore feeling more in control are established, there must be “reinforcers” — behaviors which maintain the new ways of thinking and feeling. When we move away from thinking about problems and focus on solutions, our brains are “rewired” to begin to automatically think and respond differently.[9]

Among my own reinforcers, I try hard not to discuss my illness or my symptoms unless I really have to. This way I can ensure that I think more about “normal” life, than life with an illness. I also take time to make sure I look well — the way I dress, wear makeup, and do my hair and nails are all important. This approach prevents comments that I “look unwell” and gives me feedback of “wellness” when I look in the mirror. This feedback reinforces the “rewiring” of my brain, improving pain perception and my brain’s interpretation of other bodily symptoms, including perceived stress.[9]

Conclusion

My diagnosis of FMS was a pivotal moment in my life and, upon reflection, I am aware that it could have instigated a major, long-term negative change to my life, as it has with many people I have met and spoken to with FMS. Cognitive behavioral therapy has become a first-line intervention with people with FMS in recent years and I have attempted, through this paper, to illustrate how these and other psychological approaches have ensured that I am able to live well despite the difficulties that this chronic illness brings.

References

1. Arthritis Research Campaign. Fibromyalgia: An Information Booklet. Chesterfield, UK: Arthritis Research Campaign; 2007. ↩
2. Craggs-Hinton C. Living with Fibromyalgia. London: Sheldon Press, ; 2010. ↩
3. Fibromyalgia Association UK. Patient Booklet. Cradley Heath, UK: Fibromyalgia Association UK; 2009. ↩
4. Jenner C. Fibromyalgia and Myofascial Pain Syndrome: A Practical Guide to Getting on with Your Life. Oxford, UK: How To Books Ltd.; 2011. ↩
5. Liptan G. Figuring Out Fibromyalgia: Current Science and the Most Effective Treatments. Portland, OR: Visceral Books; 2011. ↩
6. Tishler M, Levy O, Maslakov I, Bar-Chaim S, Amit-Vazina M. (2006), Neck Injury and Fibromyalgia — are they really associated? J Rheumatol. 2006 Jun;33(6):1183-5. ↩
7. Neenan M. Primary Certificates in Cognitive Behaviour Therapy and Training: Training Materials. Advanced Cognitive Behavioural Skills. London: Centre for Stress Management; 2009. ↩
8. Primary Certificate in Cognitive Behaviour Therapy and Training, Training Materials. London: Centre for Stress Management; 2009. ↩
9. Rock D, Page L. Coaching with the Brain in Mind. Hoboken, NJ: John Wiley and Sons; 2009. ↩

Copyright: © 2012 Tracy Hide. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.