The lived experiences of oropharyngeal dysphagia in adults living with fibromyalgia

Abstract Background Fibromyalgia is a chronic pain condition which has recently been linked with eating, drinking and swallowing difficulties (dysphagia). However, to date, sample sizes within completed research are small and study designs heterogeneous, and therefore, little is known about the lived experiences of dysphagia among people with fibromyalgia. To go some way towards addressing this gap in the literature, this study collected and analysed the first‐hand experiences of the physical symptoms, the psychosocial impacts and environmental factors that influenced the lived experience of a sample of people living with fibromyalgia‐associated dysphagia. Methods Qualitative semi‐structured interviews were conducted with adults with dysphagia and fibromyalgia. Reflexive thematic analysis was employed and themes were identified regarding the reported experience and impact of swallowing problems. The same researcher conducted the interviews and extracted all data, and a second researcher analysed a random sample of 5% of the data for accuracy, with no disagreements arising between the two researchers. Results All participants (n = 8) reported the negative psychosocial impact of their dysphagia. Participants reported managing their dysphagia independently, primarily using compensatory strategies. Participants discussed feeling unsupported in healthcare interactions due to clinicians not understanding the occurrence, nature or impact of eating, drinking and swallowing difficulties. Participants also reported that they did not have access to evidence‐based management strategies that adequately addressed their fibromyalgia‐related swallowing problems. Conclusions Despite minimal previous research in this area, findings here highlight the impact that dysphagia has on people with fibromyalgia. A broad range of physical symptoms were reported to have negative consequences across both social and emotional domains. The reported symptoms often required complex coping strategies and sometimes impeded participants from seeking suitable medical intervention from healthcare providers. There are both broad‐ranging implications of fibromyalgia‐associated dysphagia and reported poor perceptions of medical interactions for this cohort of patients. Therefore, there is evidently a need for clinical research into the management of this condition to develop patient‐centred care delivery options and to equip healthcare professionals with the knowledge and skills necessary to provide efficacious management to this group. Patient or Public Contribution Before initiation of the qualitative interviews, the interview schedule was piloted with an individual living with fibromyalgia and dysphagia, with feedback provided on the appropriate wording and format of semi‐structured questioning.

fibromyalgia-associated dysphagia and reported poor perceptions of medical interactions for this cohort of patients.Therefore, there is evidently a need for clinical research into the management of this condition to develop patient-centred care delivery options and to equip healthcare professionals with the knowledge and skills necessary to provide efficacious management to this group.
Patient or Public Contribution: Before initiation of the qualitative interviews, the interview schedule was piloted with an individual living with fibromyalgia and dysphagia, with feedback provided on the appropriate wording and format of semistructured questioning.
dysphagia, fibromyalgia, lived experience, psychosocial, qualitative research 3][4][5][6] People with fibromyalgia may also experience cognitive and psychiatric symptoms, in addition to sensitivity to external stimuli. 7This clinical group is often diagnosed with multiple additional comorbidities, commonly including temporomandibular disorders (TMDs), migraine and irritable bowel syndrome (IBS). 8

| Dysphagia
Dysphagia is a condition characterised by difficulty swallowing across the oral, pharyngeal, or oesophageal phases, which may be caused by a range of idiopathic or acquired conditions. 9,10It can occur across the lifespan and can significantly impact a person's health, leading to adverse and potentially fatal consequences if left untreated, including malnutrition, dehydration and pneumonia. 11,12In addition to these physical consequences, dysphagia can also have a negative impact on quality of life. 9In other neurological populations, such as those living with motor neuron disease or Parkinson's disease, research has shown that dysphagia often prompts negative food perceptions.This can subsequently reduce an individual's pleasure of eating due to the consequences of the swallowing problems. 13,143 | Fibromyalgia associated-dysphagia-Presentation and prevalence Dysphagia is not currently classified as a feature of fibromyalgia by the reference standard American College of Rheumatology criteria 15 or other existing diagnostic systems, such as the ACTTION-APS Pain Taxonomy.16 However, despite this lack of recognition, there is emerging research regarding the experience of dysphagia among those living with fibromyalgia.For example, Seccia et al. 17 discussed that patients with fibromyalgia may present with symptoms of oral-oesophageal pain and increased sensitivity in this area.Furthermore, Rhodus et al. 18 outlined that dysphagia can occur in conjunction with other oral symptoms in this population.These symptoms include xerostomia, glossodynia dysgeusia and odynophagia, a point which was also emphasised by De Baat et al. 19 These studies highlight the currently ambiguous nature of the relationship between fibromyalgia and dysphagia, and the need for further investigation into the causation and presentation of this condition.The sparse amount of research into this topic was re-emphasised recently in a systematic review, which found a very limited number of available studies which investigated dysphagia in those with fibromyalgia.20 Within the identified studies, meta-analysis found dysphagia in 51.9% of participants, while gastro-oesophageal reflux was reported in 25.9%.
However, the prevalence of other reported symptoms (e.g., glossodynia, dysgeusia, odynophagia, xerostomia or sensation of choking/bolus sticking in the pharyngeal region) was reported in too few studies to allow for synthesis in data analysis.Furthermore, the prevalence of aspiration/penetration on food/liquids/secretions or impaired mastication or pain or fatigue on chewing were not reported in any studies, thus hindering true understanding of these issues. 20Despite the small amount of information on the co-occurrence of these conditions, there are ample anecdotal reports within online message forums (e.g., Reddit) of patients living with distressing oropharyngeal dysphagia symptoms, which they describe as disabling and disruptive. 21

| Fibromyalgia associated-dysphagia-Hypothesised aetiology
There is no current definitive evidence regarding the causation of dysphagia in those living with fibromyalgia.There are, however, hypotheses that some of the commonly prescribed pain medications for this condition may secondarily cause oropharyngeal issues. 22Other potential aetiologies have been suggested regarding altered sensitivities in the central and peripheral nervous system or altered physiology in the muscles associated with swallowing secondary to neurological changes in the central nervous system. 20However, there is no definitive evidence proving aetiology at present and research in this field is sparse.

| Fibromyalgia associated-dysphagia-Research gap
People with fibromyalgia who are diagnosed with additional conditions (e.g., TMDs, IBS, rheumatoid arthritis) are reported to experience poorer health-related quality of life with worse psychosocial and overall health outcomes than those who live with fibromyalgia alone. 23Although there are emerging scientific reports regarding the prevalence 20 and impact 24 of dysphagia in those living with fibromyalgia, there is little in-depth knowledge available regarding the full spectrum of oropharyngeal symptoms and their psychosocial impact.As a result, the provision of effective clinical management for this cohort of patients is lacking.
Therefore, in an attempt to initiate research in this area, which may contribute to future positive developments in clinical practice, this study investigated the physical psychosocial implications of fibromyalgiaassociated dysphagia.Furthermore, the strategies used by the participants to cope with the reported challenges on a daily basis were also investigated.

| MATERIALS AND METHODS
This qualitative research study adopted a phenomenological perspective.Data collection was carried out through semi-structured online interviews with people with fibromyalgia and oropharyngeal dysphagia, with ethical approval granted by Trinity College Dublin (Applicant code TT59).Semi-structured individual interviews allowed for indepth and flexible investigation of personal experience, 25,26 which is appropriate in cases such as this, when minimal information is known about a condition and the experiences of those living with the issues themselves is sought in their capacity as the experts in the condition.
An interview guide (Table 1) was created by the second author based on studies with a similar design 27 and piloted with an individual with fibromyalgia and dysphagia, with feedback provided regarding the clarity of wording within the original semi-structured questions, resulting in minor rephrasing.
Participants who met the eligibility criteria (Table 2) were recruited from charities and organisations based in Ireland and the United Kingdom dedicated to fibromyalgia and other rheumatic conditions.
Administrators in these organisations acted as gatekeepers in disseminating both the participants' information leaflet and a prepared letter to all the members of their organisation.Individuals who wished to participate contacted the principal researcher and were given a consent form to sign, forming a voluntary response sample.
T A B L E 1 Interview guide.

Interview topic area
Prompt/sample questions

Interview opening
Outline the layout of the interview, the projected time interview will take, ask the participant if they have any questions and obtain verbal consent.

Demographic questions
Age, gender, country of origin, confirmation of clinical diagnosis of fibromyalgia, clinical diagnosis of dysphagia or self-diagnosis of dysphagia.

Physical symptoms
Can you describe any difficulties that you experience with your eating, drinking and swallowing?
Follow up questions related to response of initial question.

Emotional impact of feeding, eating, drinking and swallowing
How do the problems with swallowing that you are describing make you feel?
Follow up questions related to response of initial question.

Social impact of feeding, eating, drinking and swallowing
Do your swallowing difficulties affect how you socialise with others?Do your swallowing difficulties affect who you socialise with (if so, how)?
Follow up questions related to response of initial questions.

Support network
Is there anyone in your life who supports you with your swallowing problems (other people who also have Fibromyalgia, healthcare staff, family, friends)?Do you feel like people in your life understand your swallowing problem?
How do you cope with your dysphagia?
What do you do that helps you with your swallowing problem?
Follow up questions related to response of initial questions.

Interview closing
Summary of what was covered during the interview.
Ask if participant has any questions.
Explain the next steps (e.g., participant will have opportunity to check transcription of interview), Thank participant for participation in the study, Interviews, lasting between 30 and 60 min in duration, were conducted over Zoom (zoom.us)by the second author, who was a final year speech and language pathology student completing their dissertation at the time.Each interview was audio-visually recorded.
The second author then conducted broad orthographic transcription, with the subsequent member of the research team checking the transcripts to ensure accuracy.The transcripts were analysed by the second author using reflexive thematic analysis, following the six steps outlined by Braun and Clarke 28,29 to identify themes and subthemes in the data.To account for the reliability and validity of the data analysis, the first author analysed a random selection of 5% of the data collected, comparing the selection with original transcriptions for verification of accuracy.There was full consensus on transcription content between the two researchers.

| Participant demographics
Seventeen volunteers initially expressed interest in the study, and as nine people withdrew from the study before data collection, the final sample size was eight participants.
All of the participants identified as female (n = 8) and were from either the United Kingdom (87.5%, n = 7) or the Republic of Ireland (12.5%, n = 1).The mean age of the participants was 54.83 with a range of 47-59 (Table 3).Half of the participants received a

| Thematic analysis
Reflexive thematic analysis yielded five primary themes from the data, and a further 23 subthemes.

| Theme 1: Physical symptoms of dysphagia
Participants reported oral, pharyngeal and oesophageal phase dysphagia symptoms (Table 4).
Several symptoms of oral phase dysphagia were reported, including poor tongue control and xerostomia.Three participants experienced difficulties initiating a swallow and they found it challenging to explain this concept as they thought that this was unusual: So, I'm here having a cup of coffee and my husband comes in to ask me a question.I've got a mouthful of coffee and I couldn't swallow it for love nor money.
Regarding the pharyngeal phase of the swallow, all participants reported experiencing difficulties swallowing food of varying textures and consistencies and thin fluids.More than half of the interviewees described swallowing tablets: And the oval paracetamol capsules are about the biggest I can take, anything bigger than that I would have to break up because it's it I just can't do it.I would be coughing it back out.(P6) Participants also explained that they struggle to manage swallowing their secretions: Or even saliva sometimes, I can't even swallow saliva.

It's as if I can't control the back of my throat and my tongue. (P2)
T A B L E 2 Inclusion and exclusion criteria.

Inclusion criteria Exclusion criteria
• People with a diagnosis of fibromyalgia from a licensed medical practitioner.• People with self-identified or clinically diagnosed eating, drinking and swallowing problems.• People with sufficient English language skills to partake in an interview.
• People under the age of 18.
• Adults with a learning disability.
• Adults with language or cognitive-communication difficulties that would preclude them from partaking in the interview.
T The interviewees also detailed reports of choking episodes, with odynophagia also described by three participants.
Finally, several participants reported oesophageal symptoms.
Five participants described experiencing acid reflux and several people also reported symptoms of oesophageal dysmotility.

| Theme 2: Social issues associated with reported experience of dysphagia
The physical symptoms described above were associated with subsequent social impacts for all of the participants in the study (Table 5).
Each participant discussed that they avoided social interactions, both public and familial: It makes me feel like I don't want to go out for a meal.Many participants reported that their ability to order from a set menu is impacted.Some participants describe the foods they order as: Softer food, pasta, and things like that, where I don't have to, it's going to sound awful, where it slides down easily.(P6) Others stated that they do not eat restaurant food at all (e.g., 'Whenever I go anywhere, I take my own food' [P7]).
Three participants reported that they need to plan for the possibility that they will experience swallowing problems while socialising.These considerations involved the specific location of their seating: And I'll try and sit in a corner where I can hiccup as quietly as possible so that, you know, that I'm not surrounded by everyone listening.(P1) And their proximity to a private bathroom:

| Theme 3: Emotional impact of the physical and social issues associated with experience of dysphagia
All of the participants reported that they had experienced emotional challenges associated with having fibromyalgiaassociated dysphagia.The emotional impacts are divided into two sections that focus on the physical (Table 6) and social aspects (Table 7) of dysphagia.
Anxiety was the prevailing emotion related to the physical aspects of having dysphagia described by the participants.All participants described feeling anxious about eating, with the severity of this ranging from mild nervousness to severe fear of swallowing, particularly when eating alone: I'm terrified of eating.My husband sometimes goes away for the weekend to see his friends and when he's away, I barely eat anything.(P8) One participant reported seeking psychological intervention to ameliorate this anxiety (e.g., 'I had to go to cognitive behavioural therapy, to just to try and help me to swallow fluids' [P7]).These feelings of anxiety rendered a lack of enjoyment from eating for more than half of the participants, to the point that they will skip meals and eat less than advised: I sometimes just won't even bother with an evening meal, if I'm doing something for everybody else, that is, like potatoes I struggle with, like if I make wedges, or something, I don't really fancy them much anymore.
So, if I'm making something for everybody else, I sometimes just won't even bother or pick bits out, you know, and I don't have the whole meal.(P2) A small cohort of participants (n = 3) felt a degree of doubt that they were to blame for their swallowing problems.After they described their physical symptoms, some participants would follow up with hypotheses that they were causing their problems (e.g., 'So I don't know whether that's anything to do with that or if I'm drinking too fast or anything' [P2]).These participants felt in some way responsible for their physical symptoms which would lead to further negative emotions (Table 7).
All of the participants reported that their swallowing problem had an emotional impact on them, however, the emotional impact of their experiences of the swallowing problems differed if they were discussing eating or drinking in a social situation.They described feeling embarrassment and shame if they experienced problems swallowing food or drink in a restaurant or at a social gathering.The embarrassment that the participants reported translated into fear for some.However, rather than a fear of choking, they had a fear of being perceived to have swallowing difficulties by unfamiliar people: We went away a few weeks ago and went to a fish T A B L E 6 Emotional impact of the physical issues associated with reported experience of dysphagia.T A B L E 7 Emotional impact of the social issues associated with reported experience of dysphagia.

Emotion described Participant quote
Embarrassment 'And I was so embarrassed because everybody was looking at me'. (P8) Fear of being perceived to have swallowing problems 'We don't really eat out a lot.Mainly because I'm worried about choking in, in, in public.And, you know, I have done, a couple of times, and it's, I've had to go to the bathroom.And the waitresses have followed me'.(P6) Participants also discussed their attempts to access help and medical support for their swallowing problems (Table 8).
Three quarters reported that they sometimes did not feel listened to in healthcare interactions (n = 6).They described feeling dismissed when seeking help from medical professionals.In healthcare interactions, participants also felt that their healthcare providers were not aware of the occurrence of dysphagia in people with fibromyalgia.After these healthcare exchanges, there was sometimes a lack of follow-up care, and no further investigation into their dysphagia was offered: The doctor when he spoke to me, he said I think you've got a funny thing going on with your throat mechanism.He said I think it opens and closes the wrong way.Now, that's never been tested.(P5) Three participants reported receiving speech and language therapy input for their swallowing difficulties.They all had clinical assessments, but no instrumental evaluations were carried out.One participant was given no further follow-up (e.g., 'Nothing really happened with that.That meeting at all, nothing really came of it' [P8]), and two were given an exercise regime to complete.
These subthemes had a negative impact on the participant's selfesteem.The participants expressed that they felt more concern and uncertainty after reaching out for support.These feelings of uncertainty deterred the participants from engaging with healthcare providers for their swallowing difficulties, and for other issues relating to their fibromyalgia.

| Theme 5: Coping strategies
The final theme identified in the data was coping strategies.All of the participants reported that they used various coping strategies and that their support networks also used coping strategies to mitigate the challenges posed by having a swallowing problem.
The coping strategies, therefore, are reported in the following two categories: strategies used by the participants themselves and strategies that are facilitated by their support networks (Tables 9   and 10).
Participants frequently avoided seeking further medical input in favour of managing their difficulties independently.Participants also felt supported by their families if they were simply present while they were eating, as this mitigated any fear they felt about choking.

| DISCUSSION
Each participant reported their own unique combination of physical symptoms of dysphagia, with varying degrees of severity, frequency and duration.All participants described the negative psychosocial impact of their dysphagia, in addition to reports of frequent unsatisfactory clinical encounters when seeking medical care.

| Physical, social and emotional implications of fibromyalgia-associated dysphagia
The psychosocial impact of swallowing problems was unmistakable in this study, resembling reports of dysphagia in other clinical populations. 9,30As separate conditions, fibromyalgia and dysphagia can cause adverse mental health consequences. 31,32When researchers analysed the negative psychological experiences reported, it was apparent that feelings of anxiety and panic may exacerbate the swallowing difficulties reported.
It is possible that there is a cycle occurring in the lives of the participants whereby their physical swallowing problems cause feelings of fear and anxiety, and that these emotions cause their physical symptoms to worsen or become more prolonged.This connection identified here between anxiety-intensifying symptoms has already been reported in the literature.A population-based study carried out by Csupak et al. 33 concluded that people experiencing chronic pain have a higher prevalence of generalised anxiety disorder, and that people with anxiety report more severe pain and higher levels of disability Participants' emotions related to eating and drinking were often negative here.5][36][37] The psychological impact of dysphagia in those living with fibromyalgiaassociated dysphagia was heightened in social situations, as reported in this study.Extrinsic factors can play a role in a fear of socialising.Public awareness of dysphagia is circumscribed, and personal bias could lead to an individual being treated differently if they are perceived to have problems eating or drinking. 34,38A survey conducted to establish public awareness of dysphagia found that 71% of the sample did not know about the condition. 39Fibromyalgia and dysphagia are invisible illnesses, which can lead to people feeling isolated and stigmatised.It is evident that public perceptions of these conditions contribute to the negative psychosocial impact on this group of people.These findings highlight a need for people with dysphagia and fibromyalgia to be offered support from professionals who understand the physical, emotional and social factors that are impacted by swallowing difficulties.

| Experiences in healthcare
Similar to previous work in the field of fibromyalgia, 40 interviewees here expressed that they sometimes did not feel listened to in healthcare interactions and that follow-up support was rare.Some participants reported that the healthcare professionals were not aware of dysphagia occurring in people with fibromyalgia.This is understandable as there is very little existing academic information about these conditions co-occurring.Therefore, clinicians may not be currently aware of their role in supporting patients in this cohort.
Recent studies into the multidisciplinary management of fibromyalgia highlight the importance of multiple disciplines supporting individuals with this condition.Rasmussen et al. 41 found that a multidisciplinary team (MDT) helped to influence the self-efficacy of participants, and they highlighted new strategies that could be implemented to improve patient quality of life.Researching a condition through a unidisciplinary lens, particularly with a condition that is so varied, means that although an indepth investigation of specific symptoms can be carried out, it may result in possible explanations of the findings to be missed.An article published on the diet of people with fibromyalgia and the associated psychosocial outcomes concluded that a poor diet and suboptimal food intake is linked to negative effects on psychological well-being. 24Results here show that the participants often eliminated foods from their diet and, in some cases, diagnosis of fibromyalgia between 2 and 8 years before the time of data collection (2 years n = 2, 5 years n = 1, 8 years n = 1) and four participants had received a diagnosis of dysphagia more than 10 years previously.The length of time since onset of dysphagia for the cohort ranged from 2 to 5 years for most of the participants (2 years n = 3, 3 years n = 1, 5 years n = 1), however for three participants the length of time since the onset of dysphagia was greater than 5 years.
Going over to my son's house.I've got a grandson who lives with my son.And I'm not wanting to frighten them in case I start to choke.(P3) restaurant.I ended up not finishing my meal, really because I was so scared of, you know, that I'm in a restaurant, what if I end up choking.(P2) Participants felt anxiety about having difficulties swallowing in public, as this would lead to further embarrassment: I'm very conscious, because it's embarrassing, you know, I don't want to have a coughing fit, where I end up literally in tears from the choking, and you know, all your makeup washes down your face and you look like an imbecile, you know.So it does, it just limits life.(P5) A B L E 3 Description of sample.

4
Physical symptoms of dysphagia.
T A B L E 5 Social issues associated with reported experience of dysphagia.'I can't drink any alcohol.I can't enjoy life, particularly I can't go out for dinners'.(P4) Limited choice on a restaurant menu 'I couldn't go for a burger in a sit-down situation, because, that, I'm guaranteed now, if I bought this big burger, I'd be guaranteed I'd have trouble getting it down'.(P1) Being conscious of their swallowing issues when eating in a restaurant 'When I go somewhere, I always explained to people, look, don't worry, I will cough and I might choke a bit, but it's part of my condition and I can't help it.I try not to, but you know, I'm sorry if I do and it upsets you or embarrasses you or whatever'.(P5) Experiences in healthcare.
T A B L E 10 Coping strategies facilitated by others.Helps the participant to use individual strategies 'If I need a drink.I've always I've always got a bottle of water beside me when I'm having something to eat.But my daughter, she's 23.She's always very aware'.(P3) Being present at mealtimes 'With family, with, you know, they're aware that I can have a coughing fit.So, they just, they just, they're there.They don't necessarily help me because I just have to wait for it to stop.But they're there in case anything happens, you know, and I don't happen to catch my breath, you now'.(P6)