For one thing, fibromyalgia patients can easily frustrate us. Their complex presentation requires more time than the typical clinic slot affords. They leave us feeling ignorant because we do not understand them and feeling impotent because we cannot cure them. They hector us for notes certifying their disability without providing the usual signifiers of legitimacy. Of course, we have to be open to the possibility physicians can be part of the problem. And just exactly why did we accept from society the role of disability arbiter? With these obstacles removed, we may be a little less vexed by patients with widespread pain, sleep disturbances, and tender points—however they are labeled.
And while labeling is a problem, we have faced that before and moved on. Years ago, the condition of excessive urination was labeled as diabetes.
Complete Medical Guide for Disease Volume XI; Fibromyalgia
We now know that age is a confounder of sorts: The real pathology of juvenile diabetes mellitus lies in the pancreatic islet cells. Of course not; it like many other conditions in musculoskeletal medicine [ 1 ] is just poorly named. Because this code book drives payments, ICD is almost literally a gold standard; a listing there alone imbues a disease with life.
Even the defenders of fibromyalgia acknowledge that it is a diagnosis more open to dissembling than, say, an open fracture.
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Also, as noted, it is possible that fibromyalgia is more psychiatric than musculoskeletal. Yet none of these factors make fibromyalgia any less real. As Vonnegut pointed out, you are who you pretend to be. For people who have enduringly assumed the role of fibromyalgia patient, the disease has them, and not the other way around. Let us move past that. In that world, a patient presenting with widespread pain, sleep disturbances and tender points gets our sympathy and our attention without recrimination.
One day, we will know more. We might learn that fibromyalgia is a variant of depression or other psychiatric condition. We may discover a molecular etiology. Or we may find out, in retrospect, that fibromyalgia was no more than a medical meme that outlived its usefulness. Until we know more, we live up to the highest ideals of medicine by focusing on the mitigation of suffering, despite our ignorance.
Unfortunately, other ideals may get in the way. He is disconcerted by the special demands of caring for a patient bearing the fibromyalgia label and he is concerned that the resulting care leaves much to be desired. There are humanists in the American medical pantheon who spoke to the ethical challenges of caring for patients with symptoms that defy diagnostic acumen. William Osler [ 17 ] and Francis Weld Peabody [ 18 ] wrote on this topic. Bernstein quotes me out of context. Fibromyalgia denotes a complex illness narrative laden with idioms that speak to pervasive symptoms and considerable suffering, often far more suffering than is experienced by patients with organ system diseases like heart failure and many cancers.
Since there is no disease to cure, perhaps there is succor to be had in addressing the context. Fibromyalgia is not the latest rubric under which this suffering plays out. Of course it does; this is a tautology unless one ascribes to vitalistic notions. However, our tools for dissecting these correlates are imaging modalities that are too blunt to be reliable or specific. Furthermore, the implication of this approach has pejorative baggage.
Not the Last Word: Fibromyalgia is Real
It drives these patients toward sectarian practitioners who have no proclivity to challenge them, and little if any success in returning them to their premorbid state. This colors the relationship between the afflicted and family members, coworkers, and caregivers. However, fewer than half of patients report substantial improvement in pain with neuromodulatory medication 36 , 37 and intolerable adverse effects are remarkably common. Regular medication reviews are needed to balance benefits against side-effects.
Aims and objectives of the pathway
Measuring clinical outcomes for people in pain relies on patient-reported outcome measures, and so can be less straightforward than for some conditions such as diabetes or hypertension where there are objective biomarkers. Precisely because of this, the pathway recommends routine use of validated patient-reported outcome measures to monitor the severity and impact of CWP and response to treatment.
The use of opioids other than tramadol is not generally advocated in this pathway, although a trial of weak opioids is suggested in primary care. Generally, evidence for benefit is lacking 19 and using opioids liberally has led to problems at a national level for large numbers of people. The misuse of prescribed opioids in the USA has increased significantly over recent years with regular news reports of dubious marketing practices, questionable relationships between doctors, not-for-profit organizations and drug companies, and deaths associated with prescription opioids. Commencing opioids in CWP and fibromyalgia, especially those without a clear prescribing ceiling, needs a great deal of experience and justification.
Drugs that fall into this cautionary category include buprenorphine, fentanyl, methadone, morphine, oxycodone, hydrocodone, and meperidine. Starting long-term opioids is not recommended in this pathway and should be reserved for use by pain specialists to prevent the risk of inappropriate escalation. These cautionary recommendations are yet another example of the continuing concerns about the long-term use of strong opioids in chronic non-malignant pain. To deliver CBT, some of the following will need to be achieved: Best results are likely to be seen where pain specialists work with primary care in the community setting to share their expertise and support primary care physicians.
There is the potential to improve outcomes through improved access and earlier intervention. CWP, including fibromyalgia, comprises one of the most difficult areas of long-term pain to manage. Part of the reason is its intangibility. This creates potential pitfalls that the pathway seeks to address. Change will not come without significant organizational resources along with the will for specialist and non-specialist groups to create new pathways for care.
The role of the specialist is likely not to be diminished. Instead, they can expect to be more challenged as they will be managing those patients whose health has not improved despite their primary care clinician having followed a comprehensive guideline. New ways of working may need to emerge and be recognized so that specialists can support their primary care colleagues in this work. Most importantly, implementation of this pathway may transform care and health outcomes for people with CWP and fibromyalgia for the better.
The authors of this article wish to acknowledge the following in the production of the British Pain Society Chronic Widespread Pain Patient Pathway along with the pathway group members see Appendix. The Chronic widespread pain, including fibromyalgia care map 8 which can be found at www. Oxford University Press is a department of the University of Oxford. It furthers the University's objective of excellence in research, scholarship, and education by publishing worldwide. Sign In or Create an Account.
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British Journal of Anaesthesia All Journals search input. Close mobile search navigation Article navigation. Aims and objectives of the pathway. Chronic widespread pain, including fibromyalgia: Abstract Chronic widespread pain CWP , including fibromyalgia, is a highly prevalent condition with a range of disabling symptoms, both physical and psychological. View large Download slide. Survey of chronic pain in Europe: Epidemiology of chronic non-cancer pain in Europe: Prevalence of self-reported neuropathic pain and impact on quality of life: An updated overview of clinical guidelines for the management of non-specific low back pain in primary care.
Low back and radicular pain: The American College of Rheumatology criteria for the classification of fibromyalgia.
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Report of the Multicenter Criteria Committee. A prospective, within-group comparison in a community cohort of adults with chronic widespread pain. The impact of a diagnosis of fibromyalgia on health care resource use by primary care patients in the UK: Psychological and behavioural therapies in fibromyalgia and related syndromes. Managing patients with multimorbidity: The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity.
Prediction of function in daily life following multidisciplinary rehabilitation for individuals with chronic musculoskeletal pain; a prospective study. To our knowledge, no study has addressed the factors associated with treatment selection for FM. The Real-World Examination of Fibromyalgia: Patients participating in this study were enrolled from July through May from 58 outpatient health care settings including 91 participating physicians in the United States, including Puerto Rico.
Sites included outpatient practices of rheumatology The number of sites per specialty was monitored to attempt to be reflective of the types and rates of physicians seen in actual clinical practice. Sites were required to be practice settings, not research settings. They were identified based on their prior experience in observational or clinical research, their interest in FM based on publications in the literature, or referrals from other sites. Sites were further selected on the basis of the number of FM patients seen per month and whether they received good clinical practice training prior to the study entry visit of the patient.
The protocol was approved by either a central or site-specific institutional review board. All patients provided written informed consent before participating in the study. As physicians had minimal study responsibilities beyond the baseline visit, compensation to physicians did not exceed what they would have normally received for a single regular patient office visit approximately 1 hour. Minimal inclusion and exclusion criteria were used to ensure this study remained noninterventional.
Patients were identified by their care provider during routine office visits. The physicians' decisions regarding the proper treatment and care of patients were made in the course of normal clinical practice. Thus, patients were eligible for the study if they were at least 18 years of age, met criteria for FM in the opinion of the enrolling physician, were under the care of the participating physician, were cognitively able to understand and complete patient self-rated scales in English or Spanish via telephone interviews, and were available for 12 months to participate in the study.
This was a baseline assessment of a prospective month observational study. This study was designed to describe the burden of illness and treatment patterns of patients with FM, and to examine patient, physician, and care factors that influence treatment choices. All patient care by the enrolling physician occurred as part of the physician's routine clinical care.
Data were collected from three sources: The physician survey was completed by the participating physician prior to enrolling patients into the study. Once informed consent was obtained, the patient visit form was completed during a standard office visit for which the physician was prescribing a new pharmacologic treatment defined as any agent not used in the last 6 months. Physicians were asked to complete portions of the form related to the patients' medical history, physician's relationship with the patient, and a complete description of ongoing, discontinuing, and newly started pharmacologic and nonpharmacologic interventions for FM.
The patients completed the portion of the form related to their demographic and medical history. No further study-specific office visits or physician information was required. All further data were collected with CATI, in which patients were asked to respond to various questions regarding their health status and care.
Patients were assessed via telephone interviews in English or Spanish at five different time periods: Only the baseline information is included in this article. Each interview took approximately 30—45 minutes to complete. Baseline interviews had to be conducted within 14 days of the study entry visit. The physician survey included physician demographics, the physician's perception and experience treating FM, practice characteristics e. Data included patient demographics, medical history, socioeconomic status, and work or disability status. Burden was assessed by measuring prior health care utilization and by domains deemed important to determine treatment success in studies of FM by the Outcome Measures in Rheumatology Clinical Trial fibromyalgia steering committee.
These domains included pain, fatigue, global functioning, sleep quality, health-related quality of life, physical function, depression, anxiety, and dyscognition [23]. Specific validated measures are as follows: The average severity score BPI-S ranges from 0 no pain to 10 pain as bad as you can imagine. The average interference score BPI-I measures the degree to which pain interferes with various functions, and has a range from 0 does not interfere to 10 completely interferes. The Patient Health Questionnaire PHQ; range 0—30 [27,28] captures complaints of common physical symptoms seen in primary care settings.
Each symptom was graded by the patient as 0 bothered not at all , 1 bothered a little , or 2 bothered a lot. Anxiety symptoms were collected with the Generalized Anxiety Disorder GAD-7; range 0—21 [29] items were scored from 0 [not at all] to 3 [nearly every day]. The PHQ-8 [30,31] was used to measure depression severity items were scored from 0 [not at all] to 3 [nearly every day] , with ranges from 0 to Individuals' perceptions of insomnia, including symptoms of sleep, fatigue, and cognition, were measured with the Insomnia Severity Index ISI; range 0—28 [32].
The Massachusetts General Hospital Cognitive and Physical Functioning Questionnaire MGH-CPFQ; range 7—42 [33] measures patients' cognitive and physical well-being, and the Multidimensional Fatigue Inventory MFI [34] measures five constructs related to fatigue, including general fatigue, physical fatigue, reduced activity, reduced motivation, and mental fatigue.
Each subscale ranges from 0 to For all scales, higher scores indicate worse health status. Treatment variables of interest included 1 type and number of pharmacologic treatments patients were currently taking including new and continuing medications , 2 type of nonpharmacologic interventions used in the last 12 months as reported by the patient, and 3 treatment use patterns including patients new to treatment, switching from, or augmenting with prior treatments.
Pharmacologic treatment could include, but was not limited to, any medication for the management of FM, including antidepressants, pain medications, anticonvulsants, stimulants, sleep agents, or anxiolytics. Descriptive statistics were used to characterize current treatment patterns. Mean and standard deviation SD were calculated for continuous variables, and proportions were reported for categorical variables. Analyses were also performed to determine which patient and physician characteristics were associated with specific FM treatments.
Specifically, stepwise logistic regression models were run to determine factors independently associated with the use of the three medications with FDA approval for the treatment of FM duloxetine, pregabalin, and milnacipran vs all other medications. Models were also run to determine factors associated with duloxetine vs no duloxetine , pregabalin vs no pregabalin , and milnacipran vs no milnacipran.
Variables of interest were allowed to enter the models at a 0. These included the following:. A total of 2, patients were recruited into the study; 2, patients met the entry criteria and were eligible to participate in the study. Three hundred sixteen Out of the 2, eligible participants, there were 1, Patients were mostly female Patients had a diagnosis of FM for 5. Of the 91 physicians in our study, The mean SD number of years of practice in our sample was On average, physicians reported that their patients with FM could be characterized with the following symptoms: Physicians reported that most of their patients had moderate to extremely severe symptom severity Patient clinical characteristics at baseline are presented in Table 2.
Patients reported being diagnosed by a physician over the last 3 years with an average of six concomitant chronic medical conditions range from 0 to 25 conditions. Of these 25 conditions, back pain On average, over half of the patients in the sample reported prior diagnoses of depression Based on cut-points of validated measures, most patients also had moderate to severe rates of insomnia The most common events associated with the onset of FM were chronic stress