[go: up one dir, main page]
More Web Proxy on the site http://driver.im/
Next Article in Journal
Patient Preferences or Provider Pressure? The Relationship Between Coercive Contraceptive Care and Preferred Contraceptive Use
Previous Article in Journal
The Safety Profile of Inclisiran in Patients with Dyslipidemia: A Systematic Review and Meta-Analysis
You seem to have javascript disabled. Please note that many of the page functionalities won't work as expected without javascript enabled.
 
 
Search for Articles:
Title / Keyword
Author / Affiliation / Email
Journal
Article Type
 
 
Advanced Search
 
Section
Special Issue
Volume
Issue
Number
Page
 
Journals
Healthcare
Volume 13
Issue 2
10.3390/healthcare13020142
healthcare-logo
Submit to this Journal Review for this Journal Propose a Special Issue
► Article Menu

Article Menu

share Share announcement Help format_quote Cite question_answer Discuss in SciProfiles
first_page
settings
Order Article Reprints
Font Type:
Arial Georgia Verdana
Font Size:
Aa Aa Aa
Line Spacing:
Column Width:
Background:
Article

Journey of Hope for Patients with Fibromyalgia: From Diagnosis to Self-Management—A Qualitative Study

by
Amal Aldarwesh
Optometry Department, College of Applied Medical Sciences, King Saud University, Riyadh 11433, Saudi Arabia
Healthcare 2025, 13(2), 142; https://doi.org/10.3390/healthcare13020142
Submission received: 7 December 2024 / Revised: 8 January 2025 / Accepted: 10 January 2025 / Published: 13 January 2025
Browse Figures
Figure 1
<p>The frequency of symptoms discussed by patients with fibromyalgia.</p> "> Figure 2
<p>Type of physical activities reported by patients with fibromyalgia.</p> ">
Versions Notes

Abstract

:
Background/Objectives: Fibromyalgia syndrome (FMS) is a chronic, debilitating condition characterized by widespread pain, fatigue, and psychological distress. There is a lack of qualitative studies on the unique experiences of patients with FMS in Arab countries, particularly through social media. Despite the availability of diagnostic criteria, diagnosing and managing patients remains challenging. This study aimed to describe the experiences of patients with FMS in Arab countries, their understanding of the illness, and perceptions of treatment. Methods: A qualitative study was conducted using a content analysis of patients’ narratives published in a supportive group, describing their experiences with fibromyalgia. The dataset included 2305 quotes from 192 main posts and 2113 comments collected between 2019 and 2024. Results: The analysis of the posts and associated comments revealed six main themes: patients’ experiences with the syndrome, symptoms, searching for a doctor, pharmacological management, self-management, and the impact of fibromyalgia and peer support. Most posts and comments focused on patients’ experiences with self-management approaches and coping strategies, highlighting significant noncompliance with therapeutic modalities. Factors influencing patients’ experiences and decisions included their relationship with physicians, medication side effects, personal fears, and physical and mental health. Conclusions: Patients with FMS in Arab countries face similar challenges to those in other regions, including physical, psychological, social, and economic impacts. Many patients reject conventional therapeutic management strategies and adopt coping mechanisms to mitigate adverse effects and healthcare costs. The findings suggest that the physician–patient relationship, as well as the physician’s knowledge and attitude toward fibromyalgia syndrome, are the cornerstones of gaining patients’ trust.

1. Introduction

Fibromyalgia syndrome (FMS) is a clinical condition characterized by a cycle of chronic pain, sleep disturbance, and fatigue that often leads to mood disorders [1]. The exact etiology remains unclear; however, research suggests that FMS may be due to abnormalities in pain processing within the brain [1,2]. This includes elevated levels of excitatory neurotransmitters, such as glutamate and substance P, leading to central nervous system (CNS) sensitization and increased pain [1,2]. Prevalence studies conducted in Asia, Europe, North America, and Turkey indicate a range of 1.62% to 9.3% within the general population [2,3]. More recent studies using varied methodologies reported a higher prevalence of FMS in the Middle East. In Saudi Arabia, a systematic review and meta-analysis study included 4967 patients, using several diagnostic criteria and instruments, which reported a notably higher prevalence of FMS, at 13.4%, with more women affected than men [4]. A similar prevalence rate of 13.2% was reported using a self-reported fibromyalgia rapid screening tool in a cross-sectional online survey completed by 691 Egyptian physicians with a female-to-male ratio of 3.8:1. In Jordan, a cross-sectional study conducted using the American College of Rheumatology (ACR) criteria and a survey of 956 participants found a 26.5% prevalence of FMS in the study population, with female gender associated with the syndrome. [4,5,6]. Diagnosis has traditionally been based on the ACR 1990 criteria, which require widespread pain for at least 3 months and tenderness at 11 of 18 specific tender points [7]. This guideline was later modified to simplify diagnosis by excluding tender points, instead incorporating the Widespread Pain Index and Symptom Severity Scale to assess patients. In addition, symptoms must have persisted for at least 3 months in the absence of any other disorder that would explain the pain [8]. Despite these established diagnostic criteria, the average time from symptom onset to diagnosis is approximately 6 years, during which patients typically consult multiple specialists [9,10]. This delayed diagnosis imposes a socioeconomic burden on both healthcare systems and patients, and is associated with poorer patient outcomes, including increased symptom severity, as well as deteriorated mental health and quality of life [11,12].
The U.S. Food and Drug Administration has approved three medications for FMS: the antiepileptic drug, pregabalin, and two antidepressants, which are duloxetine and milnacipran. However, other off-label antidepressants are prescribed for FMS, such as tricyclic antidepressants, amitriptyline, and selective serotonin reuptake inhibitors such as citalopram, and the muscle relaxant, tricyclic derivative cyclobenzaprine [13]. Non-pharmacological recommendations for FMS patients include exercise programs, cognitive behavior therapy, hyperbaric oxygen therapy, acupuncture, and lifestyle modifications including regular tailored exercise, a well-balanced diet, and engagement in stress-release activities such as breathing exercises and mindfulness [13,14].
Studies examining patients’ experiences with FMS—from diagnosis through to treatment and the associated physical and psychological suffering—have primarily employed quantitative approaches, often using tools such as questionnaires [9,15,16,17]. Qualitative studies on chronic conditions like FMS are valuable, as they provide an in-depth view of patients’ experiences and offer insights into their perspectives on the condition and its therapeutic management. In the Arab region, few qualitative studies have explored the challenges faced by patients with FMS in managing this debilitating syndrome. Social media platforms provide a small community-like setting where patients can share experiences, values, and beliefs and receive peer support. Numerous studies have conducted qualitative content analyses of chronic conditions, including breast cancer and diabetes mellitus, through Facebook [18,19,20,21]. This qualitative study was initiated to explore patients’ unique experiences and gain insights into their perspectives by analyzing content from a patient support group on Facebook. A more comprehensive understanding can help healthcare professionals address patient concerns during treatment and establish a foundation for effective communication and mutual understanding.

2. Methods

2.1. Study Design and Data Collection

This study is based on qualitative design, employing a mixed deductive–inductive content analysis. The data for this study were obtained from the public Facebook page of the Jordanian Society of Fibromyalgia Support Group. At the time of data collection, the membership on this page was 4610. The dataset consisted of 2305 quotes comprising 192 main posts and 2113 comments, collected chronologically for analysis from posts published between 2019 and 2024. The recent posts were retrieved until they reached saturation by posts published in 2019. Most of the posts and comments were in Arabic; however, English posts were also included in the analysis. This group mostly included women who self-reported being diagnosed with FMS and living in Arab countries. It is worth mentioning that the nature of this study does not allow for examining the demographic information or the diagnosis criteria of those patients.

2.2. Data Analysis

Qualitative data were analyzed using both inductive and deductive content analyses. The unit of analysis was each individual’s narrative post or comment on the Facebook page. The data were tabulated in Thematic Coder 1.0, an Excel sheet developed by Chan (2012), available from www.derwinchan.com [22]. Relevant quotes in the project data were coded at a theme node. A node represents a collection of quotes from the data (i.e., Facebook posts) on a specific theme.
For example, suppose the following quote is added from one post: “duloxetine makes me sleepy”. In that case, the whole sentence is equal to one node, and it is linked to the theme “pharmacological management of fibromyalgia”. If a post or comment was too long and contained several ideas, codes, or themes, the sentence was broken into multiple quotes to accurately match the theme, as in the following hypothetical example: “duloxetine makes me sleepy, and I am thinking of stopping the drug (node 1, pharmacological management theme). I am disappointed with my physician; he does not listen to me. Could you please recommend a rheumatologist with whom you have had a good experience? (nodes 2 &3, relationship with physician and searching for a doctor theme) For now, I started light exercises and a keto diet (node 4, Self-management theme).” In qualitative data analysis software like Nvivo, tree nodes organize all known information about a particular theme or code hierarchically [23]. The thematic coder Excel sheet used in this study calculates the percentage, number, and coverage of nodes, in addition to the number of words under each theme. The higher the number of nodes in a theme, the higher the coverage of that theme in the data. Quantitative data were also calculated on the number of posts that discuss symptoms, medications, types of exercises, and dietary modification. After the initial data collection of 500 quotes, the researcher thoroughly examined the data to familiarize herself with the patterns and generated an initial coding framework. Data were retrieved until saturation was achieved, when no new codes or themes were generated as participants continued to repetitively post similar thoughts, questions, and concerns. The author repeatedly read the content, and initial codes were assigned to each quote derived from posts and comments, which were clustered into six main themes: patients’ experiences with the syndrome, symptoms, searching for a doctor and relationship with healthcare professionals, pharmacological management, self-management, and impact of fibromyalgia.

3. Results

3.1. Participants

Females published the majority of posts on the page (95%). Although some posts were shared by anonymous authors, the feminine pronoun appeared in the context of the conversation, and the topic of discussion, such as pregnancy, reflected the gender of the participants. Some patients are highly educated and hold bachelor’s degrees or higher, as they share their educational background and work sector, such as working as physicians, pharmacists, nurses, and dieticians. However, the exact percentage is difficult to determine because educational status is not revealed for all participants.

3.2. Themes

Participants discussed various aspects of FMS and how it affected all aspects of their lives. These discussions revealed the following six themes (each with subthemes; Table 1): (1) patients’ experiences with the syndrome, (2) symptoms, (3) searching for a doctor and relationship with healthcare professionals, (4) pharmacological management, (5) self-management, and (6) the impact of fibromyalgia and peer support. Table 1 shows the themes and subthemes generated from the data, arranged according to the highest coverage based on the number and percentage of nodes.

3.2.1. Patients’ Experience with Syndrome

Onset and Patients’ Own Explanation of the Syndrome

Patients often experience the onset of FMS following significant life events. For some women, “the illness started right after giving birth to the first child”, while another patient reported, “My pain started after three caesarean sections”. Another woman attributed her illness to miscarriage period “I was pregnant in the first year of marriage, and I miscarried, and then I started getting sick”. A male patient recognized the condition after chronic exposure to stress: “The problem started after being exposed to high work pressure for 2 years”. A significant traumatic life event was another reported cause: “Symptoms started when I lost my father in 2015, and they have continued to get worse”. A connection between the syndrome and coronavirus infection was noted in two patients. One of them stated, “I was diagnosed with fibromyalgia 6 months after being infected with coronavirus”. Most patients had primary fibromyalgia, with a few reporting autoimmunity. Many patients exhibited a good understanding of their illness and read scientific literature for updates. They explained the disease to each other in simple terms: “Fibromyalgia is considered a lifelong disease of the central nervous system” and “Patients with fibromyalgia have an amplifying response to pain”. They also understood that FMS is not an autoimmune disease; thus, no end-organ damage occurs. Moreover, patients discussed neurotransmitter-level abnormalities and their contribution to the symptoms.

Triggers of Symptoms

Most posts in the subtheme “triggers of the symptoms” indicate that stress is the leading cause of worsening symptoms. Many patients expressed their approach to avoiding stress by changing how they reacted to events and interacted with others. A female participant posted, “Now after I understood the nature of the disease, I stopped overreacting to the small stuff and started prioritising my health”. A confirming reply stated, “I learned to accept things I cannot change and control my reactions. I have also learned to put myself first.” Many patients believe that negative feelings, including anger, anxiety, and hyperempathy, were personal traits they had tried to change since the diagnosis because these negative feelings deteriorate any health improvement. One participant stated, “Anger brings us back to square one.” Another patient added, “Now, I dare to silence anyone who verbally hurts me and keep myself away from anxiety”. Moreover, some patients believe they suffer from hyperempathy toward others. “This illness makes a person very sensitive and empathise with everyone and everything. I have deep sadness over certain events such as the earthquake and strong empathy for the suffering of old people and children in particular”. This post received agreement from another patient: “I share with you the same feeling. I used to work in an oncology centre, and dealing with patients with cancer consumed me; as a result, I left my job”. Other triggers included hormonal fluctuations during the study period, severely cold or hot weather, and fasting during Ramadan. Many patients reported a worsening of their symptoms during Ramadan, when they had to fast for approximately 12–15 h in Arab countries. A female patient asked, “Are there people like me who cannot fast? I have been unable to fast for years and pay atonement.” One participant answered that she cannot fast: “Every year, I try for the first few days, but then, at the end of the month, I cannot get up from bed because of fatigue”. Another woman described her tiredness during Ramadan: “From the middle of Ramadan, my energy started to run out, and by the time of Eid, I started having a relapse that has not gone away until now”. A few participants expressed guilt for not attempting to fast during Ramadan, but others answered back with a phrase from the Qur’an: “Allah does not burden a soul beyond that it can bear”.

Severity and Treatability of Disease

Although most patients described themselves as tired and in pain, the severity of fibromyalgia differed among the patients who participated in the discussion. Some patients could grade their pain and fatigue intensity and link it to the type of activity they could accomplish or the time they spent on a task: “Walking needs a miracle”, “climbing stairs at home is painful”, “I can’t walk more than 10 min”. The more daily activity limitations a patient has, the worse they feel about themselves and their potential for recovery: “I am trapped in my body”. Interestingly, it is not uncommon for patients to describe the severity of the condition as if they were fighting a human being who lacks morality: “It is a fierce and immoral disease”. In contrast, patients who witness an improvement in their condition because of adherence to treatment or long-term self-management can similarly rate their quality of life: “I am 80% normal now! I no longer get tired easily, my sleep and memory have improved, and 80% of the pain has gone; I am free of medication and functional. However, I still have bad days from time to time”. Many patients exist between despair and hope but realize that the syndrome is incurable and acknowledge that a better quality of life can be achieved.

3.2.2. Symptoms

Participants shared their experiences with symptoms before and after diagnosis. Posts about symptoms also included discussions by newly diagnosed patients seeking support from others with similar complaints, as well as those who suspected they might have fibromyalgia secondary to an autoimmune disease. The most common symptoms were musculoskeletal pain, weakness, generalized pain, and fatigue. Figure 1 shows the number of posts and discussions on symptoms. Symptoms affect all aspects of life, including personal, family, and career areas, and impair the ability to focus on duties and tasks. A female participant described how symptoms were affecting her: “Unfortunately, as I get older, I’m noticing that the symptoms are getting more intense, and the flare-ups are more frequent, last longer, and truly take a toll on me; being stuck in bed for days, my work is being affected”. The intensity of symptoms has been reported to worsen after coronavirus infection or vaccination, as in the following statement: “I was diagnosed with fibromyalgia a short time ago. I have complained of sleep disturbances. When I wake up in the morning, I feel stiff and tired. At work, I have brain fog. My symptoms worsened after I was infected with coronavirus”. Patients believe that some symptoms are an integral part of the syndrome and that no patient escapes them. Of these, irritable bowel syndrome (IBS) is the most common. A female patient posted asking if there is a relationship between fibromyalgia and IBS, and several comments agreed and considered the relationship a fact: “If someone does not have irritable bowel syndrome, then he does not have fibromyalgia”. Another continued: “A relationship? They are close friends”.

3.2.3. Pharmacological Management of Fibromyalgia

Several classes of medications, including painkillers, antidepressants, anticonvulsants, and muscle relaxants, are prescribed to patients with fibromyalgia. The frequency of drug posts, their classification, and possible benefits for fibromyalgia are shown in Table 2. Duloxetine, gabapentin, pregabalin, and amitriptyline were the most frequently discussed medications among patients. Posts discuss the efficacy of one drug in comparison with other classes, dose, duration of treatment, and side effects, and share successful stories of therapeutic management. Most patient discussions revealed that they did not adhere to the prescribed treatment protocol. Barriers to drug adherence include the fear of addiction, concerns that antidepressants may increase suicidal thoughts, and intolerance to side effects. One patient stated, “I took amitriptyline for more than a year, then I withdrew it and stopped all other medications because it always made me sleepy and lethargic, and I felt disconnected from the world. The problem with these medications is that they are addictive”.
Among the overwhelming side effects that cause drug rejection, weight gain was reported by many patients and imposed physical and mental burdens: “I have been taking medications for fibromyalgia for 20 years. I gained a lot of weight from the medications and suffered from many side effects. I only woke up a few months ago to realise that everything I was suffering from was because of the drugs. I have stopped taking them now, and my weight is back to normal, and the stomach pain and many symptoms have disappeared.” Fear of end-organ damage was another reason for stopping the medication. One patient advised: “Stop all analgesics; they cause renal failure”. Moreover, participants often stopped medication early in the treatment because they thought the drug lacked efficacy, believing that medications lose their efficacy after a while: “I took duloxetine for a month, and it successfully controlled my pain, then stopped working”. A few patients also declared that they feel the stigma of using drugs originally prescribed as anticonvulsants or antidepressants because the notion that fibromyalgia is of psychological origin brings negative feelings to many women. Those who stopped medication were switched to over-the-counter analgesics such as paracetamol and ibuprofen.

3.2.4. Searching for a Doctor and Relationship with Healthcare Professionals

Fibromyalgia was diagnosed by neurologists or rheumatologists, as revealed by the majority of participants. Many posts in this theme (44%) requested referrals to an appropriate physician based on other patients’ experiences. Numerous names and addresses were shared across different regions and countries, with details about the physician’s expertise, treatment methods, personality, and approach to dealing with patients. Both negative and positive comments were openly shared to benefit others. A physician is complimented when they possess attributes such as being an excellent listener to the patient’s complaints, discussing the patient’s concerns, understanding fibromyalgia symptoms, and having a treatment strategy tailored to the patient’s needs.
However, many patients criticized physicians who do not believe that fibromyalgia is a real disease originating from physiological abnormalities rather than a mental disorder. One patient stated, “An illiterate doctor does not recognise fibromyalgia as a real disease and classifies the syndrome as a psychological illness. In addition to our pain, the lack of understanding and recognition of the disease leads to depression”. Some patients decided not to seek medical care because they believed that “doctors have nothing but antidepressants, tranquilisers, anti-epileptic drugs, and painkillers. They give similar advice, and each doctor objects to and contradicts other doctors’ treatments”. Others think that doctors “care about money” and are “testing different drugs on patients”. Moreover, patients complained that physicians did not educate them about the disease: “he prescribed a drug and did not talk to me about fibromyalgia”.

3.2.5. Self-Management and Lifestyle Modification

Patients with fibromyalgia have reported various lifestyle modifications to manage disease symptoms, especially when they choose to stop medication and avoid doctor visits. Many patients report that altering long-term habits, primarily diet and physical activity, and maintaining these modifications for months or even years has improved their physical and mental health. Dietary modifications that include taking over-the-counter supplements, eliminating dietary constituents such as gluten, and using herbs are shown in Table 3. Many patients believe they suffer from food intolerances and eliminate certain dietary components or follow specific dietary plans. This decision is based on a self-monitoring of foods that cause reactions or FoodPrint testing for patients who can afford it. Most patients limit or eliminate three main components: gluten, sugar, and dairy products. Posts discussing removing gluten received the highest frequency (n = 118), as many patients believe that removing gluten relieves IBS symptoms. The frequency of posts about magnesium as an over-the-counter dietary supplement was the highest compared to other supplements (n = 103). It has gained much interest among patients to relieve pain from muscle spasms, brain fog, anxiety, and to aid sleep. The choice of physical activity depends on each patient’s access to specific sports, physical ability, and pain tolerance. In several posts, patients discussed including sport in lifestyle modification without mentioning the type (n = 63). Others have specified swimming (n = 58), walking (n = 37), yoga (n = 28), stretching (n = 28), aquatic exercise (n = 17), and breathing exercises (n = 12). Moreover, physical therapy, resistance exercise, and Zumba were discussed to a lesser extent (Figure 2). Traditional practices of cupping therapy (n = 16) and acupuncture (n = 2) were also recommended by a few patients. Several posts convey recommendations for combining diet, supplements, and exercise to achieve a balanced life and long-term control of fibromyalgia symptoms. “Intermittent fasting, a healthy diet, gluten-free, dairy-free, sugar-free, exercise—especially yoga, swimming, and walking—and special supplements like magnesium, vitamin D, and omega-3 make a big difference”.

3.2.6. Impact of Fibromyalgia and Peer Support

Fibromyalgia affects mental health, with participants describing and sharing emotional pain, worries, and concerns about themselves, their families, and their careers. Most participants experienced negative emotions and felt isolated from family, friends, and the community, with a lack of understanding and support from those around them being the main reason.
Family planning and the decision to become pregnant were affected by the syndrome. Some women shared fears of exacerbating symptoms during pregnancy while stopping medication: “I have been delaying pregnancy for a couple of years now out of fear. I am getting older and want to become a mother”. Chronic pain and stiffness caused anxiety about hypothetical scenarios, as experienced by one female participant: “I have an idea that dominates my mind whenever I try to cross the street. I fear that my muscles will betray me at the wrong moment. Although this has never happened, I cannot control my fear”.
Participants described how the syndrome impaired their ability to attend work that required long hours or physical activity, such as standing for long periods. This led to late arrivals at work, career changes, or resignations. One male patient shared his difficulties at work: “I got a warning at work because I was late. They don’t understand that I am sick; they think I am faking my illness. Even my family keeps telling me that I am not ill. Unfortunately, everyone around me doesn’t support me. If I get two more warnings, I’ll be fired. This will make my financial situation difficult, and the treatments are expensive”. Peer support was evident in the group, with participants advising each other on how to overcome difficulties and offering compliments and supportive messages that conveyed an understanding of others’ suffering. In many instances, religious sayings, prayers, and words of encouragement and comfort are posted in response to someone’s pain or sadness. Stigma can be recognized from the posts under this theme where perceived stigma that reflects patients’ belief that family members and people from their surroundings have negative thoughts about them received the highest frequency. Self-stigma is also present in some patients’ statements, where they have low self-worth and low self-esteem, negative attitudes, and label themselves with words like: “ I am no longer effective” or “I am like Alzheimer’s patients”, referring to symptoms like forgetting, brain fog, and low concentration. Stigma from healthcare professionals, that leads to insufficient care and occupational stigma, were also reported by a few patients (Table 4).

4. Discussion

This study explored the perceptions of patients with fibromyalgia from Arab countries regarding their chronic illness experience through a content analysis of data from an open-access Facebook support group. The study findings reveal the patients’ journey from seeking a diagnosis and searching for a doctor until stopping treatment, as reported by many, and following a personal holistic approach to managing the syndrome. Most patients were women, as the syndrome is reported to have a high female predominance (approximately 80%) [15]. Patients reported having primary fibromyalgia, while a few patients revealed the presence of associated disorders such as rheumatoid arthritis, Sjogren’s syndrome, ankylosing spondylitis, and multiple sclerosis. In some cases, patients were treated for fibromyalgia before the discovery of autoimmunity, and vice versa. This overlap has been reported in previous studies due to symptom similarity and the absence of clinical laboratory tests confirming the presence of fibromyalgia [37]. Moreover, a few patients reported the onset of FMS after pregnancy and cesarean section. This is consistent with a previous study by Saa’d et al., who reported the prevalence of FMS symptoms among 27% of full-term healthy pregnant women who fulfilled the ACR criteria in the study and that affected the course of delivery and the need for anesthesia, despite not being diagnosed with FMS before the recruitment [38]. In a retrospective cohort study comparing the outcomes of pregnancies of women with and without FMS, the authors reported that patients had higher rates of intrauterine growth restriction [39]. Neuro-hormonal fluctuation during the menstrual cycle and pregnancy, especially in the third trimester and postpartum, was hypothesized to cause CNS sensitization, in which the inhibitor gamma-aminobutyric acid (GABA) neurotransmitter is reduced with sex hormone level fluctuation. At the same time, other excitatory neurotransmitters may rise [40]. FMS may develop as a sequela of different stressors, such as coronavirus infection, which causes severe inflammatory responses referred to as “cytokine storms”, and this is thought to sensitize the central and peripheral nervous system [41]. The journey to diagnosis is painful, as data show that many patients reported spending 5–11 years visiting physicians of different specialties. Delayed diagnosis and its negative consequences have been documented previously [11,12]. Receiving a diagnosis brings temporary relief, as almost every patient undergoes drug rotation. Finding a drug that relieves multiple symptoms persisting for years is challenging. This is consistent with other qualitative studies on patients with fibromyalgia that have reported the psychological impact of delayed diagnosis [42,43,44].
The participants described a wide range of debilitating physical symptoms that varied in duration and intensity. Chronic widespread pain, including musculoskeletal pain, received the highest ratings from patients. Patients believe in the interconnection between IBS and FMS, and many reported living with IBS and food intolerance, which required lifestyle modifications such as the elimination of gluten and dairy products. Interestingly, IBS and FMS are both prevalent in women and share similar predisposing factors such as emotional trauma, depression, and anxiety [45]. The proposed pathogenic mechanism is an improper transmission along the gut–brain axis owing to the disturbance of gut microbiota, which affects the metabolism of GABA and may alter the GABA/glutamate balance seen in FMS [46]. Patients reported that stress is the primary triggering factor that precipitates attacks and intensifies pain. Many conveyed that avoiding negative feelings associated with situations and people, even relatives, has become a life strategy for managing the syndrome. Many people described themselves as sensitive and reactive to their surroundings, and any traumatic event imposed a mental and physical burden that manifested as pain and fatigue. In many patients, the onset of fibromyalgia is linked to tragic life events. Consistent with our findings, other studies have suggested an association between psychological trauma and fibromyalgia [42,43]. Being emotional and overly empathetic is a personal trait that could be a vulnerability factor to personal distress. Studies in cognitive neuroscience have uncovered the brain circuits that become active when individuals respond to pain in an empathetic context [47]. An experimental study by De Tommaso et al. recorded the emphatic nociceptive paradigm of patients with FMS using the electroencephalogram compared to healthy subjects. Findings indicate that when patients with FMS empathize with someone else’s pain, the activation of the somatosensory circuit is triggered, closely resembling experiencing their own pain [48].
In our study, participants discussed the overwhelming experience of finding a physician who listens to and supports the assessment and treatment processes and shared opinions about how healthcare professionals lack knowledge and experience of the syndrome. Patients feel unsupported when physicians deny fibromyalgia as a valid diagnosis and attribute the symptoms to psychological factors. This adds to their social isolation and loneliness, as they receive similar dismissive perspectives from family members, friends, and co-workers. This leads to stigma, with patients being labelled as delusional and accused of complaining despite being healthy. This, presumably, explains the noncompliance of patients to antidepressant prescriptions, in addition to the side effects. In agreement with our findings, previous qualitative studies have reported patient frustration with the healthcare system due to the failure to recognize and diagnose fibromyalgia, the lack of experience in managing the condition, and the insufficient patient education provided by physicians [42,43,44,45,46,47,48,49].
In our study, fluoxetine, pregabalin, gabapentin, and amitriptyline were the most frequently discussed medications. Patients withdrew from treatment without consultation due to fears of addiction and side effects. Others believed that these drugs were ineffective and no longer reduced pain. Some patients reported that reading the inserted pamphlet on antidepressants and anticonvulsants led to noncompliance because of the indications and adverse reactions. This is consistent with Aster et al. who conducted a cross-sectional study and found that NSAIDs, amitriptyline, and pregabalin were among the current and past medications used by patients with fibromyalgia [15]. The causes of discontinuation reported in that study align with our findings [15]. In accordance with previous research [50], patients in the current study developed coping strategies to manage the syndrome, such as diet, physical activity, and over-the-counter pharmaceutical preparations, while reducing or discontinuing prescribed medication. Most patients adopted a balanced approach, gradually combining lifestyle modifications, especially when introducing a variety of sports and physical activities to avoid pain and exertion. Similar coping strategies have been reported previously.
Sharing experiences within a supportive group has positive effects, with some patients describing it as finding a “big family” or a “tribe”. Older or more experienced participants, especially those with healthcare or medical backgrounds, served as mentors who provided comments and advice to newer members of the group. Patients felt that their voices were heard, and they could freely ask questions, explore all aspects of their illness, and find explanations for how they felt physically and mentally. This finding agrees with that of Reig-Garcia et al. who explored the impact of a peer social support network on women with fibromyalgia [51]. The authors reported that peer support had multiple positive effects on physical, mental, and social well-being.
One of the main limitations of this study was that the data collection from Facebook does not provide any information about participants’ demographic data. Moreover, there is a lack of information regarding the participants’ medical history, such as the disease duration, diagnosis criteria, medications, and co-morbidities. The data presented in this study were dependent on what participants revealed about themselves in the posts, making it impossible to ensure that all subjects would meet the ARC criteria for diagnosis and making it possible for the supportive group to have members with somatic symptom disorder who were mistakenly diagnosed with FMS. Another limitation is that a single researcher performed data collection and analysis. However, Bradley et al. indicated that experts in the field argued that a single researcher who conducts the coding process is sufficient and preferred [52,53,54,55]. Unlike interviews, the text analysis process did not involve data transcription; therefore, a peer review was unnecessary to ensure credibility and reduce bias [52]. A single researcher who collects and analyzes data is performing an integrated process that is essential for obtaining high-quality data, especially in research where maintaining ongoing relationships with study participants is necessary [52]. Moreover, the current content analysis is more descriptive than interpretive, and the posts do not have multiple meanings; thus, the codes and themes are easily identified, and the author expects a high agreement between coders if another coder is involved. One approach utilized in this study is that the author started the research by observing the content and returning to data at multiple time points to ensure the consistency of data coding. The second approach was a peer debriefing, in which one expert colleague was involved for just one session during data analysis to discuss the methods and interpretation of data.

5. Conclusions

In conclusion, patients with fibromyalgia in Arab countries share similar health journeys and experiences with patients from other cultures. In addition to the overwhelming physical symptoms, the syndrome has psychological, social, and economic impacts that affect quality of life. Many patients oppose the therapeutic management of fibromyalgia and have developed coping strategies to avoid the adverse effects of medication, the cost of therapy, and the unsupportive healthcare system. Socio-cultural differences in family responsibilities impose specific duties on Arab women, such as caring for the children as a daily sole carer and other responsibilities toward the spouses’ family. These factors were triggering stress for some women in our study. Moreover, there is also a religious duty, such as during the month of Ramadan, which many reported as a cause of health deterioration, struggle, and enduring guilt for not being able to fast. Practitioners involved in patient care should possess the necessary clinical training and skills to support patients’ needs from diagnosis to treatment. In some patients, the pathology is linked to traumatic events and life experiences; thus, FMS sufferers may benefit from counselling, cognitive behavioral therapy, or psychotherapy to address personality traits or psychological trauma. Moreover, community health programs and awareness activities are needed to support patients and would be beneficial in terminating the social isolation of patients with the syndrome.

Funding

This research received no external funding.

Institutional Review Board Statement

This study was conducted in accordance with the Declaration of Helsinki and approved by the Institutional Review Board Subcommittee for Health Sciences College Research on Human Subjects at the College of Medicine at King Saud University (Approval no. E-24-9013) on 15 September 2024.

Informed Consent Statement

Written informed consent for publication has been waived as the study is qualitative in nature and depends on analyzing written text on social media (Facebook support group) and it is public page open to everyone. Moreover, the study does not include any identifying data for any subject. There was no direct quotation from the posts.

Data Availability Statement

The original contributions presented in this study are included in the article. Further inquiries can be directed to the author.

Conflicts of Interest

The author declares no conflicts of interest.

References

  1. Siracusa, R.; Paola, R.D.; Cuzzocrea, S.; Impellizzeri, D. Fibromyalgia: Pathogenesis, Mechanisms, Diagnosis and Treatment Options Update. Int. J. Mol. Sci. 2021, 22, 3891. [Google Scholar] [CrossRef] [PubMed]
  2. Jurado-Priego, L.N.; Cueto-Ureña, C.; Ramírez-Expósito, M.J.; Martínez-Martos, J.M. Fibromyalgia: A Review of the Pathophysiological Mechanisms and Multidisciplinary Treatment Strategies. Biomedicines 2024, 12, 1543. [Google Scholar] [CrossRef] [PubMed]
  3. Gayà, T.F.; Ferrer, C.B.; Mas, A.J.; Seoane-Mato, D.; Reyes, F.Á.; Sánchez, M.D.; Dubois, C.M.; Sánchez-Fernández, S.A.; Vargas, L.M.R.; Morales, P.V.G. Prevalence of fibromyalgia and associated factors in Spain. Clin. Exp. Rheumatol. 2020, 123, 47–52. [Google Scholar]
  4. Bawazir, Y. Prevalence of fibromyalgia syndrome in Saudi Arabia: A systematic review and meta-analysis. BMC Musculoskelet. Disord. 2023, 24, 692. [Google Scholar] [CrossRef]
  5. Abdulazim, D.O.; Lacerda, Y.; Mendes, A.; Souza, B.; Salem, A.A.; Al-Shaarawy, A.; Eissa, B.M. Prevalence and predictors of fibromyalgia among Egyptian physicians: A cross-sectional study. Egypt. Rheumatol. Rehabil. 2024, 51, 40. [Google Scholar] [CrossRef]
  6. Akel, A.; Sarhan, M.Y.; Dwairy, M.A.; Al-Zu’bi, B.; Al-Qudah, A.; Alsmarat, O.A.; Alsaraireh, T.; Abu-Jeyyab, M. The prevalence of fibromyalgia in adults at Al-Karak Jordan: A cross-sectional study. Ann. Med. Surg. 2024, 86, 1315–1321. [Google Scholar] [CrossRef]
  7. Wolfe, F.; Smythe, H.A.; Yunus, M.B.; Bennett, R.M.; Bombardier, C.; Goldenberg, D.L.; Tugwell, P.; Campbell, S.M.; Abeles, M.; Clark, P. The American College of Rheumatology 1990 Criteria for the Classification of Fibromyalgia. Report of the Multicenter Criteria Committee. Arthritis Rheum. 1990, 33, 160–172. [Google Scholar] [CrossRef]
  8. Wolfe, F.; Clauw, D.J.; Fitzcharles, M.A.; Goldenberg, D.L.; Katz, R.S.; Mease, P.; Russell, A.S.; Russell, I.J.; Winfield, J.B.; Yunus, M.B. The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care Res. 2010, 62, 600–610. [Google Scholar] [CrossRef]
  9. Choy, E.; Perrot, S.; Leon, T.; Kaplan, J.; Petersel, D.; Ginovker, A.; Kramer, E. A patient survey of the impact of fibromyalgia and the journey to diagnosis. BMC Health Serv. Res. 2010, 10, 102. [Google Scholar] [CrossRef]
  10. Gendelman, O.; Amital, H.; Bar-On, Y.; Ben-Ami Shor, D.; Amital, D.; Tiosano, S.; Shalev, V.; Chodick, G.; Weitzman, D. Time to diagnosis of fibromyalgia and factors associated with delayed diagnosis in primary care. Best Pract. Res. Clin. Rheumatol. 2018, 32, 489–499. [Google Scholar] [CrossRef]
  11. Salaffi, F.; Farah, S.; Bianchi, B.; Lommano, M.G.; Di Carlo, M. Delay in fibromyalgia diagnosis and its impact on the severity and outcome: A large cohort study. Clin. Exp. Rheumatol. 2024, 42, 1198–1204. [Google Scholar] [CrossRef] [PubMed]
  12. Salaffi, F.; Farah, S.; Bianchi, B.; Lommano, M.G.; Di Carlo, M. AB0148 diagnostic delay on fibromyalgia diagnosis and its impact on the severity and outcome. Ann. Rheum. Dis. 2024, 83, 1308–1309. [Google Scholar]
  13. Winslow, B.T.; Vandal, C.; Dang, L. Fibromyalgia: Diagnosis and Management. Am. Fam. Physician 2023, 107, 137–144. [Google Scholar] [PubMed]
  14. Majdoub, F.; Ben Nessib, D.; Ferjani, H.L.; Kaffel, D.; Triki, W.; Maatallah, K.; Hamdi, W. Non-pharmacological therapies in Fibromyalgia: New horizons for physicians, new hopes for patients. Musculoskelet. Care 2023, 21, 603–610. [Google Scholar] [CrossRef]
  15. Aster, H.C.; Evdokimov, D.; Braun, A.; Üçeyler, N.; Sommer, C. Analgesic medication in fibromyalgia Patients: A Cross-Sectional Study. Pain Res. Manag. 2022, 2022, 1217717. [Google Scholar] [CrossRef]
  16. Catalá, P.; Gutiérrez, L.; Écija, C.; Peñacoba, C. Pathological cycle between pain, insomnia, and anxiety in women with fibromyalgia and its association with sisease impact. Biomedicines 2023, 11, 148. [Google Scholar] [CrossRef]
  17. Ruschak, I.; Montesó-Curto, P.; Rosselló, L.; Aguilar Martín, C.; Sánchez-Montesó, L.; Toussaint, L. Fibromyalgia syndrome pain in men and women: A scoping review. Healthcare 2023, 11, 223. [Google Scholar] [CrossRef]
  18. Abramson, K.; Keefe, B.; Chou, W.Y. Communicating about cancer through Facebook: A qualitative analysis of a breast cancer awareness page. J. Health Commun. 2015, 20, 237–243. [Google Scholar] [CrossRef]
  19. Greene, J.A.; Choudhry, N.K.; Kilabuk, E.; Shrank, W.H. Online social networking by patients with diabetes: A qualitative evaluation of communication with Facebook. J. Gen. Intern. Med. 2011, 26, 287–292. [Google Scholar] [CrossRef]
  20. Cheung, Y.T.; Chan, C.H.; Wang, M.P.; Li, H.C.; Lam, T. Online social support for the prevention of smoking relapse: A content analysis of the WhatsApp and Facebook social groups. Telemed. e-Health 2017, 23, 507–516. [Google Scholar] [CrossRef]
  21. Beullens, K.; Schepers, A. Display of alcohol use on Facebook: A content analysis. Cyberpsychol. Behav. Soc. Netw. 2013, 16, 497–503. [Google Scholar] [CrossRef] [PubMed]
  22. Chan, D. HematiCoder 1.0 [Computer Software, 2012]. Available online: http://www.derwinchan.com/ThematiCoder (accessed on 30 November 2024).
  23. Wong, L. Data analysis in qualitative research: A brief guide to using nvivo. Malays. Fam. Physician 2008, 3, 14–20. [Google Scholar]
  24. Dhaliwal, J.S.; Spurling, B.C.; Molla, M. Duloxetine; StatPearls Publishing: Treasure Island, FL, USA, 2024. Available online: https://www.ncbi.nlm.nih.gov/books/NBK549806/ (accessed on 7 December 2024).
  25. Thour, A.; Marwaha, R. Amitriptyline; StatPearls Publishing: Treasure Island, FL, USA, 2024. Available online: https://www.ncbi.nlm.nih.gov/books/NBK537225/ (accessed on 7 December 2024).
  26. Maan, J.S.; Ershadi, M.; Khan, I.; Saadabadi, A. Quetiapine; StatPearls Publishing: Treasure Island, FL, USA, 2024. Available online: https://www.ncbi.nlm.nih.gov/books/NBK459145/ (accessed on 7 December 2024).
  27. Ameer, M.A.; Patel, P.; Saadabadi, A. Neuroleptic Medications; StatPearls Publishing: Treasure Island, FL, USA, 2024. Available online: https://www.ncbi.nlm.nih.gov/books/NBK459150/ (accessed on 7 December 2024).
  28. Singh, D.; Saadabadi, A. Venlafaxine; StatPearls Publishing: Treasure Island, FL, USA, 2024. Available online: https://www.ncbi.nlm.nih.gov/books/NBK535363/ (accessed on 7 December 2024).
  29. Yasaei, R.; Katta, S.; Patel, P.; Saadabadi, A. Gabapentin; StatPearls Publishing: Treasure Island, FL, USA, 2024. Available online: https://www.ncbi.nlm.nih.gov/books/NBK493228/ (accessed on 7 December 2024).
  30. Cross, A.L.; Viswanath, O.; Sherman, A.L. Pregabalin; StatPearls Publishing: Treasure Island, FL, USA, 2024. Available online: https://www.ncbi.nlm.nih.gov/books/NBK470341/ (accessed on 7 December 2024).
  31. Maan, J.S.; Duong, T.v.H.; Saadabadi, A. Carbamazepine; StatPearls Publishing: Treasure Island, FL, USA, 2024. Available online: https://www.ncbi.nlm.nih.gov/books/NBK482455/ (accessed on 7 December 2024).
  32. Tucker, W.D.; Sankar, P.; Theetha Kariyanna, P. Selective Beta-1 Blockers; StatPearls Publishing: Treasure Island, FL, USA, 2024. Available online: https://www.ncbi.nlm.nih.gov/books/NBK499982/ (accessed on 7 December 2024).
  33. Ghiasi, N.; Bhansali, R.K.; Marwaha, R. Lorazepam; StatPearls Publishing: Treasure Island, FL, USA, 2024. Available online: https://www.ncbi.nlm.nih.gov/books/NBK532890/ (accessed on 7 December 2024).
  34. Fontrier, T. Lithium for Fibromyalgia. Anesth. Analg. 2004, 98, 1505. [Google Scholar] [CrossRef] [PubMed]
  35. Yasaei, R.; Saadabadi, A. Clonidine; StatPearls Publishing: Treasure Island, FL, USA, 2024. Available online: https://www.ncbi.nlm.nih.gov/books/NBK459124/ (accessed on 7 December 2024).
  36. Khan, I.; Kahwaji, C.I. Cyclobenzaprine; StatPearls Publishing: Treasure Island, FL, USA, 2024. Available online: https://www.ncbi.nlm.nih.gov/books/NBK513362/ (accessed on 7 December 2024).
  37. Berwick, R.; Barker, C.; Goebel, A. guideline development group. The diagnosis of fibromyalgia syndrome. Clin. Med. 2022, 22, 570–574. [Google Scholar] [CrossRef] [PubMed]
  38. Saa’d, S.; Many, A.; Jacob, G.; Ablin, J.N. High prevalence of fibromyalgia symptoms among healthy full-term pregnant women. Rheumatol. Int. 2013, 33, 1555–1560. [Google Scholar] [CrossRef] [PubMed]
  39. Zioni, T.; Buskila, D.; Aricha-Tamir, B.; Wiznitzer, A.; Sheiner, E. Pregnancy outcome in patients with fibromyalgia syndrome. J. Matern. Fetal Neonatal Med. 2011, 24, 1325–1328. [Google Scholar] [CrossRef]
  40. Mucci, V.; Demori, I.; Browne, C.J.; Deblieck, C.; Burlando, B. Fibromyalgia in Pregnancy: Neuro-Endocrine Fluctuations Provide Insight into Pathophysiology and Neuromodulation Treatment. Biomedicines 2023, 11, 615. [Google Scholar] [CrossRef]
  41. Khoja, O.; Mulvey, M.; Astill, S.; Tan, A.L.; Sivan, M. New-Onset Chronic Musculoskeletal Pain Following COVID-19 Infection Fulfils the Fibromyalgia Clinical Syndrome Criteria: A Preliminary Study. Biomedicines 2024, 12, 1940. [Google Scholar] [CrossRef]
  42. Hellström, O.; Bullington, J.; Karlsson, G.; Lindqvist, P.; Mattsson, B. A phenomenological study of fibromyalgia. Patient perspectives. Scand. J. Prim. Health Care 1999, 17, 11–16. [Google Scholar] [CrossRef]
  43. Raymond, M.C.; Brown, J.B. Experience of fibromyalgia. Qualitative study. Can. Fam. Physician 2000, 46, 1100–1106. [Google Scholar]
  44. Varinen, A.; Vuorio, T.; Kosunen, E.; Koskela, T.H. Experiences of patients with fibromyalgia at a Finnish Health Centre: A qualitative study. Eur. J. Gen. Pract. 2022, 28, 157–164. [Google Scholar] [CrossRef] [PubMed]
  45. Erdrich, S.; Hawrelak, J.A.; Myers, S.P.; Harnett, J.E. A Systematic Review of the Association Between Fibromyalgia and Functional Gastrointestinal Disorders. Ther. Adv. Gastroenterol. 2020, 13, 1756284820977402. [Google Scholar] [CrossRef] [PubMed]
  46. Garofalo, C.; Cristiani, C.M.; Ilari, S.; Passacatini, L.C.; Malafoglia, V.; Viglietto, G.; Maiuolo, J.; Oppedisano, F.; Palma, E.; Tomino, C. Fibromyalgia and Irritable Bowel Syndrome Interaction: A Possible Role for Gut Microbiota and Gut-Brain Axis. Biomedicines 2023, 11, 1701. [Google Scholar] [CrossRef] [PubMed]
  47. Lamm, C.; Decety, J.; Singer, T. Meta-analytic evidence for common and distinct neural networks associated with directly experienced pain and empathy for pain. Neuroimage 2011, 54, 2492–2502. [Google Scholar] [CrossRef]
  48. de Tommaso, M.; Ricci, K.; Conca, G.; Vecchio, E.; Delussi, M.; Invitto, S. Empathy for pain in fibromyalgia patients: An EEG study. Int. J. Psychophysiol. 2019, 146, 43–53. [Google Scholar] [CrossRef]
  49. Escudero-Carretero, M.J.; García-Toyos, N.; Prieto-Rodríguez, M.Á.; Pérez-Corral, O.; March-Cerdá, J.C.; López-Doblas, M. Fibromyalgia: Patient perception on their disease and health system. Qualitative research study. Reumatol. Clin. 2010, 6, 16–22. [Google Scholar] [CrossRef]
  50. Arfuch, V.M.; Caballol Angelats, R.; Aguilar Martín, C.; Gonçalves, A.Q.; Carrasco-Querol, N.; González Serra, G.; Sancho Sol, M.C.; Fusté Anguera, I.; Friberg, E.; Berenguera, A. Patients’ Lived Experience in a Multicomponent Intervention for Fibromyalgia Syndrome in Primary Care: A Qualitative Interview Study. Int. J. Environ. Res. Public Health 2022, 19, 13322. [Google Scholar] [CrossRef]
  51. Reig-Garcia, G.; Bosch-Farré, C.; Suñer-Soler, R.; Juvinyà-Canal, D.; Pla-Vila, N.; Noell-Boix, R.; Boix-Roqueta, E.; Mantas-Jiménez, S. The Impact of a Peer Social Support Network from the Perspective of Women with Fibromyalgia: A Qualitative Study. Int. J. Environ. Res. Public Health 2021, 18, 12801. [Google Scholar] [CrossRef]
  52. Bradley, E.H.; Curry, L.A.; Devers, K.J. Qualitative data analysis for health services research: Developing taxonomy, themes, and theory. Health Serv. Res. 2007, 42, 1758–1772. [Google Scholar] [CrossRef]
  53. Morse, J.M. Designing Funded Qualitative Research. In Designing Funded Qualitative Research, 2nd ed.; Denzin, N., Lincoln, Y.S., Eds.; Sage Publications: Thousand Oaks, CA, USA, 1994; pp. 220–235. [Google Scholar]
  54. Morse, J.M.; Richards, L. Readme First for a User’s Guide to Qualitative Methods, 3rd ed.; Sage Publications: Thousand Oaks, CA, USA, 2012; pp. 149–168. [Google Scholar]
  55. Janesick, V. The Choreography of Qualitative Research: Minuets, Improvisations, and Crystallization. In Strategies of Qualitative Inquiry, 4th ed.; Denzin, N., Lincoln, Y.S., Eds.; Sage Publications: Thousand Oaks, CA, USA, 2003; pp. 46–79. [Google Scholar]
Healthcare 13 00142 g001
Figure 1. The frequency of symptoms discussed by patients with fibromyalgia.
Figure 1. The frequency of symptoms discussed by patients with fibromyalgia.
Healthcare 13 00142 g001
Healthcare 13 00142 g002
Figure 2. Type of physical activities reported by patients with fibromyalgia.
Figure 2. Type of physical activities reported by patients with fibromyalgia.
Healthcare 13 00142 g002
Table 1. Themes and subthemes of posts and comments.
Table 1. Themes and subthemes of posts and comments.
ThemeExplanationSubthemesNumber of Nodes (%)Number of Words
Self-managementPosts discussing self-treatment with over-the-counter medications and lifestyle modifications, including diet and exercise. Diet, exercise, vitamins, herbs, over-the-counter medications. 772 (28.51)16,159
SymptomsPosts discussing current symptoms shared by patients. Pain, fatigue, musculoskeletal pain and weakness, gastrointestinal issues, ocular issues, weight changes, insomnia, memory, and mood issues. 448 (16.54)7885
Impact of fibromyalgia and peer supportPosts discussing the emotional impact of the syndrome, stigma, and how patients support each other. Feeling down, feeling isolated, feeling guilty, concern about disability, impact on family, others’ misunderstanding, need for support, stigma, patient-to-patient support, seeking advice from others.443 (16.40)10,927
Pharmacological managementPosts discussing the efficacy of drugs, both positive and negative, and compliance.Efficacy, sharing experiences with a brand, dose, duration of treatment, recommendations, compliance, starting and stopping medications.432 (15.95)8320
Patients’ experiences with the syndromePosts discussing patients’ experiences with the syndrome. Patients’ own explanations of the syndrome, onset of the disease, triggers of symptoms, severity of disease, beliefs in treatability, differential diagnosis. 333 (12.30)7555
Searching for a doctor and relationship with healthcare professionalsPost used to seek advice about finding the right healthcare professional. Asking for help to find a doctor, positive and negative opinions about treating physicians. 279 (10.30)4881
Table 2. Number of posts about therapeutic management of fibromyalgia.
Table 2. Number of posts about therapeutic management of fibromyalgia.
DrugClassUses and Possible Benefits in FibromyalgiaFrequency of Posts (n)Example of Patients’ Statements
Duloxetine Selective serotonin and norepinephrine reuptake inhibitorApproved for chronic musculoskeletal pain, anti-anxiety, fibromyalgia [24]140“I am on Duloxetine for two years now, side effects disappeared after two weeks of use. I will continue using it.”, “I suffered from most of Duloxetine side effects including constipation”. “I have a child with special needs, and I have to take care of him, even if it means taking duloxetine for life to overcome physical pain and exertion.”
EscitalopramSelective serotonin reuptake inhibitorMajor depressive disorder 7“I have been on escitalopram for two years now. I have no side effects”.
VortioxetineSerotonin modulatorMajor depressive disorder 1“Vortioxetine is a great drug and has no mentioned side effects.”
Amitriptyline Tricyclic antidepressant, serotonin, and norepinephrine reuptake inhibitorMajor depressive disorder, off-label use for fibromyalgia and chronic pain, irritable bowel syndrome, migraine [25]30“Amitriptyline causes mouth dryness, which was bothersome, and I stopped the drug”, “Amitriptyline made me sleepy, fatigued, and nervous. I stopped the drug after the second dose”
QuetiapineAtypical antipsychotic; it blocks dopamine D2 and serotonin 2A (5HT2A) receptorsApproved for schizophrenia, off-label use for insomnia and anxiety [26] 1“Without quetiapine, I would lose my mind because of lack of sleep”.
Amitriptyline hydrochloride/Perphenazine. First-generation antipsychotic: blocks dopamine D2 receptors/serotonin and norepinephrine reuptake inhibitorTranquilizer and antidepressant, off-label use for fibromyalgia to manage pain and sleep problems [27] 1“After a series of trial with anti-depressants, the doctor prescribed Amitriptyline/Perphenazine to control my pain”
Flupentixol/melitracen Antipsychotic: blocks dopamine D1& D2 receptors/serotonin and norepinephrine reuptake inhibitorTranquilizer and antidepressant, off-label use for fibromyalgia to manage pain and sleep problems [27]2“I can tolerate Flupentixol/melitracen but not duloxetine or amitryptyline”.
VenlafaxineSerotonin and noradrenaline reuptake inhibitorMajor depressive disorder, social anxiety disorder, panic disorder, off-label use for fibromyalgia and migraine prevention [28]1“I took pregabalin for two years and tapered it. I was on duloxetine for a while. Now, the doctor has given me venlafaxine.”
Gabapentin AnticonvulsantNeuropathic pain, restless legs syndrome, off-label use for fibromyalgia and mood disorders [29]52“The improvement was almost temporary in the first month. The pain gradually returned. Then, the doctor increased the dose of the medication and I continued on this rollercoaster for 8 months, and finally I decided to stop it”.
“Gabapentin causes addiction”, “Gabapentin made my symptoms worse”,
“Gabapentin causes insomnia and made me nervous”, “I am always hungry”
Pregabalin AnticonvulsantNeuropathic pain, seizures, fibromyalgia, off-label use for restless legs syndrome, insomnia, anxiety disorders [30]55“pregabalin makes me hallucinating”, “pregabalin causes addiction on long-term use”, “pregabalin increased my weight”
CarbamazepineAnticonvulsantUsed for epilepsy, off-label use for fibromyalgia, neuropathic pain, and restless leg syndrome [31]2“I take carbamazepine is given to relieve spasm, migraine and to sleep.”
BisoprololBeta1-blockerHypertension and heart disorders, non-FDA approval for migraine, arrhythmia, and anxiolytic use [32]4“Bisoprolol did not work well with me. I take another beta-blocker which control my tachycardia but causes hypotension”
Nebivolol1“I took nebivolol, which is similar to bisoprolol. It has controlled the heart rate temporarily, but palpitations remained; I continued using it for a few months, and then I stopped it on my own without consultation”.
DiazepamAnxiolytic benzodiazepineManagement of anxiety disorders: off-label for muscle spasms, pain, and insomnia [33]1“Before diazepam, I could not sleep for days”
Lorazepam1“A neurologist prescribed lorazepam for me. I started with half a tablet. I have taken one tablet for the last 5 years before bedtime. If I skip a dose, I can’t sleep because of the pain”
BromazepamShort-acting benzodiazepine Approved for anxiety 1“Yesterday, my doctor prescribed bromazepam and duloxetine to help me relax and sleep”
Zolpidem
Non-benzodiazepine receptor modulator Approved for insomnia 1“I took Zolpidem to sleep. It helped me for a while, then stopped working”
Lithium Mood stabilizer Approved for mania, off-label use for pain and insomnia [34]1“Lithium controls my panic attack”
Clonidine Alpha-2- adrenergic agonistApproved for hypertension, off-label use for anxiety and insomnia [35]1“I recently started taking clonidine. It is used to manage blood pressure, but now scientists have discovered that it is effective for anxiety. I have been taking it for a few days, and the pain has completely disappeared. I am surprised!”.
Muscle relaxants
Muscle relaxants (unspecified class)22
CyclobenzaprineCentrally acting skeletal muscle relaxantApproved to relieve muscle spasms, off-label use for fibromyalgia to manage insomnia [36]1“When I am in a lot of pain, I take Cyclobenzaprine at night”
TolperisoneApproved to relieve muscle spasms1“I tried tolperisone, but muscle pain did not subside”.
Paracetamol/orphenadrine Non-opioid
analgesic/muscle relaxant		Approved to relieve muscle spasms1“ I believe that paracetamol/orphenadrine is the right muscle relxant for fibromyalgia”
Analgesics
Tramadol Opioid analgesicAnalgesic4“I take tramadol once weekly and any analgesic containing codeine. Other analgesics did not control my pain”.
Short-term cortisoneCorticosteroidAnalgesic/Anti-inflammatory4“I take cortisone for a short period until the attack subsides. 30 tablets will not cause significant complications but will relieve the pain.”
Ibuprofen Nonsteroidal anti-inflammatory drugs (NSAIDs)Analgesic/Anti-inflammatory30“I have been suffering from unexplained bruises, but they were gone when I stopped taking ibuprofen and other NSAIDs. They interact with my treatment”.
Diclofenac5“ I take diclofenac to relieve the pain. It is very effective”, “I need a muscle relaxant and diclofenac to control flares”
Nimesulide2“I take nimesulide intermittently “
Celecoxib4“I take celecoxib and muscle relaxant. Gabapentin did not help me”.
Etoricoxib3“Etoricoxib controls my pain”
ParacetamolNon-opioid analgesic Analgesic and antipyretic50“I only take Panadol Joint when the pain is unbearable”, “Paracetamol is the best with no side-effects”.
Paracetamol/Ibuprofen/CaffeineNon-opioid analgesic/NSAIDsAnalgesic10“I take Paracetamol/Ibuprofen/Caffeine intermittently for muscle pain”
Ibuprofen/ParacetamolNSAIDs/Non-opioid analgesicAnalgesic10“I stopped all medications years ago, but I recommend ibuprofen/paracetamol when necessary.”
Table 3. Dietary modification approaches of patients with fibromyalgia.
Table 3. Dietary modification approaches of patients with fibromyalgia.
Type Frequency of Posts (n)
Supplements: vitamins and mineralsMultivitamins10
Magnesium (malate, bisglycinate, L-threonate)103
Vitamin D56
B-complex30
B1228
5HTTP28
Iron20
Melatonin20
Omega14
Zinc10
Q106
Vit C6
Elimination of dietary constituentsGluten 118
Sugar81
Milk 44
DietKeto5
Low carb5
Vegan 5
Intermittent fasting 11
Herbs Ashwagandha13
Moringa4
Costus4
Wheatgrass supplement4
Table 4. Types of perceived stigma by fibromyalgia patients.
Table 4. Types of perceived stigma by fibromyalgia patients.
Type of StigmaDescriptionFrequency of Posts (n)Example of Patients’ Statements
Perceived stigma Patients’ believe that others have negative beliefs about them, like considering them delusional and mentally ill.60Patient 1: “Our problem is not only with the doctors. The problem is that society must accept us and improve our living requirements”
Patient 2: “People around me thought I was faking and lying about my symptoms and described me as a lazy person.”
Self-stigmaPatients perceive themselves as weak, incompetent, and a burden, and have lower self-esteem and negative belief about self. 38Patient 1: “I feel weak. I have to bury all my dreams because of this disease.”
Patient 2: “I have thoughts that I am not a good mother, and I think obsessively about how my husband’s family think about me.”
Healthcare professional stigmaHealthcare professional under-treat patients with fibromyalgia and think about their condition as a mental disorder.17Patient 1: “I had an accident, and I was hospitalized and suffered pain for which I asked the physician for severe painkillers; the physician refused to believe the severity of my pain as a fibromyalgia patient and treated me as an addict to painkillers, threatening to stop the treatment.”
Patient 2:“My doctor does not believe in fibromyalgia, and he told me it is a lie, and women believed it. If you are sick, then the lab should confirm that”
Occupational stigma Patients are treated in the workplace as incompetent or mentally-ill due to low productivity6“I am a schoolteacher and love my job, but I was treated as someone who could not bear the work burden. I feel pressured to get early retirement, but staying at home between four walls will worsen my situation.”
Disclaimer/Publisher’s Note: The statements, opinions and data contained in all publications are solely those of the individual author(s) and contributor(s) and not of MDPI and/or the editor(s). MDPI and/or the editor(s) disclaim responsibility for any injury to people or property resulting from any ideas, methods, instructions or products referred to in the content.

Share and Cite

MDPI and ACS Style

Aldarwesh, A. Journey of Hope for Patients with Fibromyalgia: From Diagnosis to Self-Management—A Qualitative Study. Healthcare 2025, 13, 142. https://doi.org/10.3390/healthcare13020142

AMA Style

Aldarwesh A. Journey of Hope for Patients with Fibromyalgia: From Diagnosis to Self-Management—A Qualitative Study. Healthcare. 2025; 13(2):142. https://doi.org/10.3390/healthcare13020142

Chicago/Turabian Style

Aldarwesh, Amal. 2025. "Journey of Hope for Patients with Fibromyalgia: From Diagnosis to Self-Management—A Qualitative Study" Healthcare 13, no. 2: 142. https://doi.org/10.3390/healthcare13020142

APA Style

Aldarwesh, A. (2025). Journey of Hope for Patients with Fibromyalgia: From Diagnosis to Self-Management—A Qualitative Study. Healthcare, 13(2), 142. https://doi.org/10.3390/healthcare13020142

Note that from the first issue of 2016, this journal uses article numbers instead of page numbers. See further details here.

Article Metrics

Back to TopTop