Medline via PubMed and Cochrane Library were searched for relevant articles. A broad search strategy was designed for patient-journey in FM. Search terms were synonyms of (“Fibromyalgia”) AND (“patient journey” OR “personal impact”), and the search was adapted to suit both databases. The reference lists of all articles selected for review were manually searched for additional records. The investigation was conducted in the bibliographic databases from inception to March 2022 and was limited to articles written in English or Spanish.

Articles were eligible if reporting on the patient journey of FM or the impact of the disease irrespective of the design (quantitative or qualitative). The articles had to focus on various aspects of a patient's entire experience with FM, starting from the onset of symptoms to diagnosis and treatment. Additionally, we searched for articles that discussed patients “interaction with the healthcare system, the doctor–patient relationship, and healthcare professionals” experiences in treating FM patients. We also paid special attention to articles addressing all these aspects in Latin America. Articles were excluded if they did not report an original contribution to the research topic or did not have a full text available (e.g., conference abstracts or protocols).

Using the search strategy, one reviewer (TO) independently searched the electronic databases and screened the articles. The second author (LC) blindly double-screened 5% of the articles by title and abstract and 10% of the full-text articles, obtaining a 100% agreement rate with the first reviewer.

Data were extracted using a standardized template form designed for this research. A deductive narrative review synthesis method was selected to best capture the themes and findings in the identified studies. As scoping reviews aim to provide an overview of the existing evidence regardless of methodological quality or risk of bias, no critical appraisal was performed.12,13 However, missing information in articles was recorded in the data extraction template to assess overall methodological reporting quality. A meta-analysis was not considered appropriate for this review, given the absence of predefined hypotheses and the qualitative nature of the majority of target studies.

Although widespread chronic pain is the predominant symptom, patients with FM also experience multiple additional symptoms (an average of 7 out of a list of 14 in a survey of 800 patients and more than 1600 physicians from eight countries).14 The most frequent symptoms are fatigue, sleep problems, and concentration difficulties, a finding that is consistent with other studies.15–17

In addition to multiple physical symptoms, approximately one-third of people with FM also have clinically relevant levels of anxiety or depression.2–5 Moreover, some authors have seen an association of FM with severe psychosocial processes, such as loss of total body integrity,18 stigmatization19 and other social problems.20

All this results in an impaired quality of life and often marked disability,4,6 to the extent that the perception of general health status is worse than that of people with other chronic pain conditions, such as rheumatoid arthritis, osteoporosis, or osteoarthritis.3,15,21 A survey confirmed the negative impact of FM on motivation, concentration, mobility, personal relationship, and hobbies.14 The presence of FM dramatically impacts the quality of life of individuals who suffer from it, as well as their personal, family and social development, leading to breakups, added family obligations and even economic losses due to health, care and labour costs, often leading to disability for work.22

FM impacts employment to the extent that almost half of the patients missed at least two weeks of work in the last year because of FM; nearly a quarter were unable to work, and another quarter failed to work all the time because of FM.14,15 In an international survey, the economic impact was more notable in Latin America than in Europe, with almost half of the patients having more than 40 days of missed work in the last year.23 It has been shown that prolonged absence from work can affect many areas of FM patients’ health.24,25

Patients with FM report difficult experiences with the healthcare system.8,20,26 They commonly feel disappointed, ignored, or powerless during their relationship with healthcare professionals and the system.8,27 Participation in care support can also be difficult due to barriers to access to speciality medicine consultations.28,29

The non-specific symptomatology of FM and the absence of radiological, analytical and anatomopathological findings make it difficult to manage the disease from the classical biomedical approach.30

Current treatment approaches, such as physical exercise or acceptance-based cognitive-behavioural therapy, show modest, though synergistic, effect sizes.11 The problem is that access to this type of care is uneven and depends on what is available or funded within each country's healthcare system.18

The European and Latin American healthcare environments are different. A survey conducted in these two regions found that, in Europe, people with FM are primarily cared for in public healthcare versus one-third in Latin American countries, where FM patients have mainly managed in private healthcare.23 This difference can make the patient's journey very different.

With these difficulties in acceptance and understanding of FM, there seems a need to include focused education for physicians regarding FM, starting ideally at medical school, to ensure all types of physicians have a basic understanding of the condition. This is particularly important for non-specialists. This is important to give the different approaches to management required for the pain of various origins, in addition to effective management of comorbidities and the multi-factorial symptoms of FM.23

Due to this lack of knowledge, Primary Care Providers have self-reported uncertainty when diagnosing and managing chronic syndromes, including FM and its diverse manifestations.8 FM can also be co-morbid with various clinical conditions, including rheumatoid arthritis, depressive disorders, irritable bowel syndrome and tension-type headache, which span the scope of numerous medical specialities.31 Chronic pain syndromes have often been underdiagnosed, leading to excessive testing, inappropriate treatment, and increased and prolonged healthcare utilization.32

For decades, FM has provoked debate among healthcare providers regarding its diagnostic label's clinical usefulness and diagnostic criteria.33 This has been associated with barriers to accessing care; it has been found that 50% of Canadian rheumatologists, for example, have endorsed refusing referrals for consultation from patients with a reported diagnosis of FM.33

In the survey cited previously23 explained that patients in Europe most commonly presented to Primary care providers (95–98%), rheumatologists (62–72%), neurologists (51–61%) and psychiatrists (21–32%) about their diagnosis of FM. The lack of a clear pathway for patients to navigate within the healthcare system has often led to siloed care, multiple medications to treat different symptoms and worsened disability.23,30

Several studies have focused on the distress of patients who do not perceive their medical care as adequate, searching for legitimacy and their resistance to psychological explanations of pain and suffering.34–36 Patients’ “nomadism” and stigmatization, as well as ambiguities and difficulties in physician–patient interaction, have also been extensively investigated.18,19,37–43

In this relationship, different roles of patients with FM have been described. They may sometimes use strategies to gain control of their situation during the treatment process and to influence healthcare professionals, using their status as “experienced” patients familiar with the system and their disease to gain advantages.44 Non-commitment, confrontation, persuasion, demand and emotional distancing also give them a certain degree of power in the relationship.19 The patient may even learn to control the effects of medication that affect the relationship with their physicians.45 Qualitative studies have revealed the efforts of women with chronic pain to maintain their credibility by trying to fit into the “expectations of biomedical correctness”.37

The patients interviewed in the work of Colmenares et al.,46 all of whom were treated in the public health system, report being well cared for because they undergo a physical examination and receive clear explanations from the rheumatologists and consider that they are “in good hands”, despite the precarious conditions of the hospital, the long waiting times and the teaching activity, which does not allow for intimacy or patient-centeredness, and, on the contrary supports a physician-centred approach.46 Åsbring and Närvänen44 also describe how private medicine patients attempt to acquire knowledge to take control of their situation with the physician, and rheumatologists recognize that these patients demonstrate ability, confrontation, insistence, and noncompliance with instructions.

From the clinician's perspective, there is an evident concern about the difficulties in treating these patients. Hayes et al.8 report the feeling of helplessness experienced by physicians confronted with FM. This context of dissatisfaction and questioning of mutual trust can, as Durif-Bruckert et al. show, amplify pain.45 The search for treatment is concurrent with the search for a relationship based on mutual trust and goodwill. Another paper also noted that physician prescription might signal “the physician's interest and right to access therapeutics”.47 The rheumatologists interviewed by Colmenares et al. alluded to several reasons for considering people with FM as “difficult patients”. These reasons were longer consultation times, the demand to be listened to and to hear detailed explanations, failure to improve, emotional difficulties they do not know how to deal with, and noncompliance with treatment and instructions.46 However, the interviewees expressed interest and commitment to these patients, unlike other colleagues. These findings coincide with the study by Briones-Vozmediano et al.30 in which physicians found the visits of patients with FM problematic as they perceived their professionalism and explanations to be questioned, despite which they were markedly interested in these patients, empathizing and communicating with them, which is considered a benefit. Unfortunately, this perception was not shared by the patients, who, on the contrary, perceived a lack of support and attention.

In a Swedish study, the authors conclude that the strategies employed by healthcare professionals to manage patients with FM and chronic fatigue are only partially patient-centred.38 Directly patient-centred approaches seek to make patients take responsibility for their condition by encouraging them to accept their situation and commit to doing something tangible for themselves. Although physicians try to make patients take responsibility for their treatment (patient-centred) and lifestyle changes, this responsibility is suggested in an authoritarian non-negotiated and routine way, as the exact instructions are given to each individual, without taking into account their possibilities of achieving them.46

Some studies have shown that, in chronic pain such as FM, the doctor–patient relationship is characterized by conflict and delegitimization between healthcare professionals and patients,37,48 which means that it is not only the patient but also the relationship between the two that marks the difficulty. When the patient does not meet the “expectations of correctness” in the physician's opinion, and when, in turn, the physician does not meet them either, the relationship becomes difficult.46 In the study by Haugli et al., patients interviewed expressed discomfort within a doctor–patient relationship caused by an objection to instructions on how to exercise or other recommended guidelines.48 In this same study, minimization of symptoms was evident, considering some of the comments made by rheumatologists. This underestimation of the disease prevents these patients from being recognized as highly complex sick people with unique needs.

The physician's loss of control over the situation and the change of established roles also lead to rejection and stigmatization of the FM patient. The social conflict between medical ideological characteristics and the patient's disadvantaged position is one of the determining factors of the current medical consultation model, which is a real obstacle in terms of communication and social interaction.49 Moreover, as Hayes et al.8 shows, physicians feel frustrated with patients’ demands, partly due to a lack of capacity and therapeutic tools, especially regarding psychological mechanisms and pain management.

Hayes et al.8 showed that primary care physicians have insufficient knowledge and skills to diagnose FM and that not all believe it to be a possible diagnosis. It has been shown, however, that labelling a disease in medical terms produces relief and reassurance for patients with FM, thanks to the legitimization of the problem.50,51

Diagnosis can have variable effects when patients are informed that the cause of their disease is unknown and the disease is not curable, causing confusion and anxiety, which is why many physicians prefer not to make this diagnosis and some refer to FM as an “empty” diagnosis.41 This event, in which the diagnosis is revealed, can be associated with the pilgrimage in which the patient lives and relives his or her condition and suffering, listening to various explanations and medical expectations about its (no) cure; that is, health care may not end with the diagnosis, but recreates, again and again, the experience of the disease.46 Comparing public care with private care, the pilgrimage of general care patients is more extended, and their diagnosis, after the onset of symptoms, occurs much later.46

The survey by Choy et al. focuses on the patient's journey to diagnosis.14 At the time of the survey, patients had been experiencing FM symptoms for an average of 6.5 years, with an average of 11 months before seeing a physician. Interpretation of data on time between first symptoms and attendance at the physician should be made with caution, as patients may have a history of brief, transient episodes of pain and other symptoms before persistent symptoms develop. Some patients seem to ascribe the onset of symptoms to an exact time, for example, after a traumatic event, while others may go through long periods of localized pain or other symptoms. The survey by Clark et al. studied differences in the follow-up and experience of patients with FM between Latin America and Europe.23 Latin American patients reported having FM symptoms for significantly longer periods, taking much longer to be diagnosed, and seeing more physicians to receive a diagnosis than European patients. Studies in the US indicate that patients often spend 5 years before receiving a correct diagnosis of FM,7,14 suggesting that, despite differences in the journey to diagnosis, patients in both regions receive a relatively similar diagnosis (Latin America: 3.5 years; Europe: 2.5 years). The time difference between the parts represents FM patients’ workload when the diagnosis is unclear. For example, pain and other symptoms (such as fatigue, sleep problems, depression, etc.) may be treated by physicians separately or even ignored.52 These and similar issues are inherent variables of patients before receiving a confirmed diagnosis of FM.7

From the time patients first recall seeing a physician for their FM symptoms, it takes an average of two years, and they visit or are referred to multiple specialists and undergo numerous investigations before a diagnosis is established.6,14 This diagnostic delay contributes to patient frustration.5 One of the reasons of the delay is the postponement in getting the first appointment with a physician. In the survey by Choy et al., the most frequent reason (74%) for waiting to see a doctor is the belief that symptoms would resolve.14 Given that FM symptoms can fluctuate in time and severity, it is not surprising that patients wait some time before seeking help from a physician. Half of the patients also waited to see a physician because they disliked taking medications or going to the doctor. Patients seek help not only because of their present symptoms but also because of the impact these symptoms have on their quality of life.

Different studies have found that patients sometimes have to persuade and “convince” their physicians that they have a real disease, that they need to be treated and that their symptoms should be recognized.48,53 They want their healthcare professionals to show more interest in their disease.54

Treatment is provided according to the symptoms experienced by the patient and is not standardized. Differences between regions provide key insights into differential health practices. From a pharmacological point of view, FM is managed with multiple medications, although less so in Latin America than in Europe,23 which may influence the negative impact of FM symptoms in Latin America versus Europe. In addition, it has been shown that treatment patterns may vary depending on the patient's ethnicity.55,56 These inherent variables may influence prescribing practices in Latin America versus Europe, especially considering European patients generally present with fewer symptoms.23

Up to 70% of patients surveyed in both regions in the work of Clark et al. had used over-the-counter drugs, highlighting the high level of self-medication in FM.23 Although specific over-the-counter (OTC) treatments were not collected, and these would have varied between the different countries surveyed, even within a single region, more than half of the patients reported using OTC treatments in both areas, although significantly more among patients in Latin America than in Europe.

Aerobic exercise is helpful in patients with FM,57,58 while less than 50% of the patients from Latin America and Europe report having it prescribed, and a study comparing the management of FM between Germany and the USA reports that “aerobic exercise” is used by 32% of US patients compared to 58% of Germans; however, the proportion of patients performing gentle exercise showed the opposite ratio (64% vs 80%).59

Other non-pharmacological treatment options, such as relaxation techniques and lifestyle changes, are used more frequently in Europe than in America.23 Given the differences in the economics of some Latin American countries compared to Europe, these treatments may not be easily accessible or reimbursable, making their usefulness and efficacy challenging to demonstrate and implement in Latin America.