Oh for the dream of precision medicine in the world of fibromyalgia (FM)! But how can one possibly apply precision medicine to a condition with the character of a chameleon?
Why do we say FM is like a chameleon? The suffering experienced by persons with FM is camouflaged by an outside appearance of normalcy, and the symptoms of FM come and go almost imperceptibly. Similar to the changing colours of the chameleon, the pain experience of FM tends to flow over and around the body in a mist-like fashion. Furthermore, the exact root cause of FM remains hidden and silent, awaiting detection. So how can this conundrum, which affects up to 2% of people worldwide be unravelled? In our recent review paper published in the Journal of Pain we have tried to provide some clarity, order and direction, to assist both patients and health care professionals regarding FM. We have even titled the paper “Unravelling fibromyalgia”.
Factors that have contributed to the current challenges in FM care are the variability of symptoms between individual patients, differences in severity and lack of any “gold standard” treatments. This complexity is daunting and it is for this reason we have tried to simplify an approach to caring for people with FM. We propose a patient-centered and individualized graduated management strategy that can be applied by following a few simple steps.
Step 1. Persons with FM are individuals
It must be acknowledged that each and every patient with FM is different, and has unique needs. FM is a heterogeneous condition with variability in symptoms and symptom intensity, psychophysiologic responses to stress, patterns of coping and outcomes with treatment. This calls for an individualized and tailored approach to clinical care that is guided by shared decisions between patient and health care professional.
Step 2. Does the patient have ONLY FM or are there other accompanying conditions or features?
FM is no longer considered to be a unique disorder. It may co-exist with other conditions. Therefore categorize a person with FM into various subgroups as follows:
- FM without any other illness
- FM associated with mental health problems
- FM associated with other pain conditions such as irritable bowel syndrome, migraine or tension headaches, low back pain, and others
- FM associated with another disease such as rheumatoid arthritis, Ankylosing spondylitis, and others.
Step 3. Gauge the severity of FM
This can be a challenge as there is no biomarker for FM, symptoms are subjective, and there is often a mismatch between patient and physician global assessment of illness severity. As daily function and participation in usual life activities is associated with quality of life, we propose a fairly simple assessment of severity as follows:
- Mild symptoms that do not interfere with daily function
- Moderate symptoms that do interfere somewhat, such as frequent sick days, difficulty participating in leisure activates
- Severe symptoms that substantially interfere with function, prolonged sick leave, inability to do household activities
Having taken note of the 3 proposed steps, it may be simpler to embark on a tailored and personalized treatment approach. Bearing in mind that treatments in general offer only a modest effect at best, and that drug treatments are commonly associated with adverse effects (often symptoms similar to those found in FM), non-drug strategies should be the foundation for management of every patient with FM. Apart from specifically addressing symptoms of FM, non-drug strategies that include sufficient health related physical activity, strategies to reduce stress and pacing of work and social activities have global health benefits.
1. Rank key symptoms according to severity. Identify with the patient the symptom/s of greatest importance, in other words, “go for the money”. For instance, pain might be the overriding symptom for one person, whereas difficulty with sleep might be more important to another. Therefore a “targeted symptom approach” could provide a good starting point. Symptoms to be explored include:
- sleep disturbance
- mood disturbance
- difficulties with memory and concentration
2. Education of patients should be focussed towards ensuring that the patient maintains good healthy lifestyle practices, such as sufficient physical activity (current recommendation of 150 minutes of moderate intensity activity in at least 10 minute bouts) , attention to sleep hygiene, control of stress and adherence to a regular routine. Motivational coaching may be used to encourage adherence to recommendations.
3. Drug therapy may be considered for those with specific needs when non-pharmacologic measures have been insufficient, such as important mood disorder, sleep disturbance and uncontrolled pain that interfere with function. In the context that the developed world in particular has become a “pill focussed society”, and that patients expectations are often to leave the doctor’s office with a prescription in hand, a change in treatment culture may at first seem daunting. With the understanding that symptoms of FM are likely to persist to some degree throughout life, people are living longer, and co morbid illnesses are likely to develop over the years, prudence in prescribing drugs is warranted. Physicians should also be vigilant in the follow up of patients to ensure that continued drug treatment is truly still required and that the adverse effects of medications are not outpacing the purported benefits.
4. Outcome goals for the patient must also be realistic and patient led, with the knowledge that symptoms seldom disappear completely, but can generally be sufficiently modulated to allow for maintained function and continued life participation and enjoyment.
We recognize that we have proposed an ideal treatment strategy that may be difficult to implement in all health care settings. For example, current recommended drug treatments may not be available or affordable for all patients, especially for those in developing countries. Even for patients in the developed world, health care resources for non-drug treatments such as psychological interventions or complementary medicines, or access to multidisciplinary treatments and pain centers may be limited. Health care professionals with expertise in treating more severe forms of FM, including those with competence in pain management and mental health, are insufficient in number, even in first world countries. In this context, we hope that we have provided a simplified starting point for physicians to be confident to develop collaborative models of treat to target care for FM.
About Winfried Häuser
Winfried is specialist in general internal medicine, pain medicine and psychosomatic medicine. He is head of the steering committee of the German guideline on fibromyalgia and member of the steering committee of the updated recommendations of the European League Against Rheumatism (EULAR) on the management of fibromyalgia.
About Mary-Ann Fitzcharles
Mary-Ann has worked as a clinician, teacher and clinical researcher at McGill University, Montreal Canada since 1982. Her career interest has been focused towards the clinical context of pain in the rheumatic diseases and especially fibromyalgia syndrome. She is the lead for the 2012 Canadian guidelines for the management of fibromyalgia. Recent work has addressed pain management in the rheumatic diseases with publications addressing use of opioids and cannabinoids in rheumatology patients.
Winfried Häuser, Serge Perrot, Daniel J. Clauw, Mary-Ann Fitzcharles (2018). Unravelling Fibromyalgia—Steps Toward Individualized Management. J Pain 19(2);125-134.