“When we are no longer able to change a situation, we are challenged to change ourselves.” Victor Frankl (1946)
Some background and previous research on fibromyalgia
The practice of mindfulness has been shown to be beneficial for people suffering from the debilitative effects of fibromyalgia. Fibromyalgia is a devastating condition characterised by widespread pain, debilitating fatigue, sleep disturbance and joint stiffness. Symptoms vary from individual to individual and even for one individual, vary from day to day.
I recently submitted a research paper as part of my MA Human Givens Psychotherapy degree with Nottingham Trent University. My study had posed the question: Is information giving and skills development an effective psychological intervention for people suffering from fibromyalgia? I devised and piloted a programme in Cork city which I called “Living with uncertainty, living with fibromyalgia”, working in conjunction with a local fibromyalgia support group. The programme was run over 8 weeks and combined psycho-education (much of which was taken from Human Givens teaching) with skills development (mindfulness and other relaxation techniques) in a group setting. Mindfulness is increasingly suggested today as a tool with which people suffering from the pain of chronic conditions can learn to find acceptance and I have personally found that its effects on emotional health and well-being are enormous. (See, for example, Jon Kabat-Zinn 1992 and 1996)
Results from the pilot were encouraging: Participants showed a statistically significant overall improvement in mood as measured by quantitative questionnaires completed pre- and post-intervention. Results from a focus group interview suggested that the main benefits of participation were learning the skill of mindfulness and being with others who totally accepted them in a supportive and positively focussed environment. They reported being better able to accept their condition and had started to find meaning and purpose in their lives.
I also put together a summary of past and present research into fibromyalgia, concentrating particularly on non-drug interventions and what had been found to work and what had not and this is just a small snap-shot from it:
First of all, how does fibromyalgia affect lives? Basically it affects all aspects of daily physical functioning. Burckhard (1993) showed that women with fibromyalgia consistently scored among the lowest in quality of life measures versus women with rheumatoid arthritis, osteoarthritis, chronic obstructive pulmonary disease, or diabetes. Bernard et al (2007) found that 62% of sufferers have difficulty climbing stairs, 55% have difficulty walking any distance and 35% have difficulty with day-to-day tasks. They also found that fibromyalgia has a negative impact on personal relationships, career and mental health.
Is there a cure? Not at present – a wide variety of both drug and non-drug interventions have been used. One key problem is that fibromyalgia patients vary significantly in the type and severity of symptoms experienced, in the presence of medical and psychiatric co- morbidities, and in a whole range of genetic, cognitive, behavioural and social human factors. Some drugs appear to help some people, others find no benefits from drugs at all and those which do have benefits do so via an unknown mechanism (Plante 2006).
Could non-drug interventions be the way forward? Much work is currently underway but some results have been encouraging. Alex Zautra of Arizona State University is a leading researcher into resilience – specifically the role of stress and emotions on the capacities of people to sustain wellbeing and recover from illness and other life challenges He has done a lot of work with people with fibromyalgia, saying that the condition is characterised by unpredictable symptoms, unknown aetiology and “treatments of unimpressive effectiveness” and that the illness uncertainty that results may be a key risk factor in adjustment to the condition. He also said that the role uncertainty plays may help explain the increased co-morbidity of physical conditions, the higher levels of depression and anxiety, and the greater perceived severity of symptoms in fibromyalgia. (See Johnson 2006)
I found this piece of research particularly interesting: Sim and Madden (2008) carried out a “metasynthesis” of 23 qualititative studies on strategies used to manage the condition, using methods such as individual and group interview. They found four different patterns of perceiving and managing symptoms: Struggling (people managed their everyday life by mobilising their physical and psychological strength to fight their pain and fatigue), adapting (people managed their everyday life by planning their activities on the basis of their assumptions of limitations), in despair (people despaired as they could no longer cope with their pain and life situation) and giving up (people had given up many activities of everyday life and felt that their symptoms dominated their life.)
I questioned what makes one person struggle, one adapt, one despair and one give up, as described by Sim and Madden above? And how might fibromyalgia sufferers be helped to perceive and manage symptoms in a more positive way and so avoid the awful cycle of despair and learned helplessness (as described by Seligman 1975) that can result, which in turn can exacerbate physical symptoms? If sufferers are able to find a degree of acceptance about their condition, despite the uncertainty that surrounds it, this might be beneficial in terms of lowering emotional arousal, improving sleep quality and lifting mood. This might also have a positive effect on pain perception and other physical symptoms and thus improve functional abilities, so creating a domino effect which will result in a positive rather than a negative cycle.
The concept of personal empowerment and self-management in the area of health and well-being was an underlying theme in my research. Pat Deegan, a leader in the field of mental health recovery movement, herself a survivor of the psychiatric system, noted, “I have learned that psychiatric medicine is not the only type of medicine that is important to recovery. Personal medicine, or those things that raise our self- esteem and make life worth living are vital to recovery” (2004). These words have much relevance to fibromyalgia sufferers, who could be described as having been let down by the health system in a similar way. Within the long-term chronic condition paradigm, the traditional passive patient role is increasingly redundant (Crossley, 1998). Lorig (2001) has been a leading advocate for the idea of patient self-management programmes for people suffering from long term chronic illness. These have since been run successfully in the US. In the UK and Ireland, they have been run with arthritis sufferers. The goal of such is to enable participants to build self-confidence to assume a major role managing their conditions and a key feature is that people with chronic conditions are themselves trained to train others. This has been found to work as effectively, if not more effectively, than health professionals.
Patient support groups in Ireland have expressed interest in the model on which this pilot programme is based. A similar low cost programme is now being run in Cork for chronic fatigue (or ME) sufferers. It is hoped that eventually medical practitioners might be able to direct patients to similar programmes running in their local area and that the Health Service Executive might fund them, thus making them accessible to all.
For more information about Mindfulness go to my Mindful Self-Help page
If you would like more information about Counselling and Stress-related illness go to my Stress-related Illness page
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BERNARD, A., PRINCE, A. and EDSALL, P. (2000) Quality of life issues for fibromyalgia patients. Arthritis Care Res 13:42-50.
DEEGAN, P.E. (2004). Rethinking Rehabilitation: Freedom. Study of Current Rehabilitation,121, 12, 5–10.
Burckhardt, C.S., Clark, S.R., Bennett, R.M.: The fibromyalgia impact questionnaire (FIQ): development and validation. J Rheumatol. 18:728-733, 1991
K JOHNSON, L., ZAUTRA, A. and DAVIS, C. (2006)The Role of Illness Uncertainty on Coping with Fibromyalgia Symptom. Health Psychol. November; 25(6): 696–703.
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