{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,12]],"date-time":"2026-11-12T15:38:38Z","timestamp":1794497918012,"version":"4.9.1"},"reference-count":33,"publisher":"MDPI AG","issue":"24","license":[{"start":{"date-parts":[[2024,12,11]],"date-time":"2024-12-11T00:00:00Z","timestamp":1733875200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Healthcare"],"abstract":"<jats:p>Background and Objectives: Fibromyalgia has many unmet needs relating to treatment, and the delivery of effective and evidence-based healthcare is lacking. We analyzed social media conversations to understand the patients\u2019 perspectives on the lived experience of fibromyalgia, factors reported to trigger flares of pain, and the treatments being discussed, identifying barriers and opportunities to improve healthcare delivery. Methods: A non-interventional retrospective analysis accessed detail-rich conversations about fibromyalgia patients\u2019 experiences with 714,000 documents, including a fibromyalgia language tag, which were curated between May 2019 and April 2021. Data were analyzed via qualitative and quantitative analyses. Results: Fibromyalgia conversations were found the most on Twitter and Reddit, and conversation trends remained stable over time. There were numerous environmental and modifiable triggers, ranging from the most frequent trigger of stress and anxiety to various foods. Arthritis and irritable bowel syndrome (IBS) were the most frequently associated comorbidities. Patients with fibromyalgia reported a wide range of symptoms, with pain being a cardinal feature. The massage, meditation and acupuncture domains were the most reported treatment modalities. Opportunities to improve healthcare delivered by medical providers were identified with current frustration relating to a lack of acknowledgement of their disease, minimization of symptoms and inadequately meeting their care needs. Conclusions: We developed a comprehensive, large-scale study which emphasizes advanced natural language processing algorithm application in real-world research design. Through the extensive encapsulation of patient perspectives, we outlined the habitual symptoms, triggers and treatment modalities which provide a durable foundation for addressing gaps in healthcare provision.<\/jats:p>","DOI":"10.3390\/healthcare12242511","type":"journal-article","created":{"date-parts":[[2024,12,11]],"date-time":"2024-12-11T12:38:56Z","timestamp":1733920736000},"page":"2511","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Using Natural Language Processing and Social Media Data to Understand the Lived Experience of People with Fibromyalgia"],"prefix":"10.3390","volume":"12","author":[{"given":"Lucy","family":"Bell","sequence":"first","affiliation":[{"name":"White Swan, Blue Fin Building, Fora, 1st Floor, 110 Southwark Street, London SE1 0SU, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Beth","family":"Fordham","sequence":"additional","affiliation":[{"name":"White Swan, Blue Fin Building, Fora, 1st Floor, 110 Southwark Street, London SE1 0SU, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1015-1633","authenticated-orcid":false,"given":"Sehreen","family":"Mumtaz","sequence":"additional","affiliation":[{"name":"Division of Rheumatology, Mayo Clinic Florida, Jacksonville, FL 32224, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9047-6173","authenticated-orcid":false,"given":"Reena","family":"Yaman","sequence":"additional","affiliation":[{"name":"Division of Rheumatology, Mayo Clinic Florida, Jacksonville, FL 32224, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0008-4070-6557","authenticated-orcid":false,"given":"Lisa","family":"Balistreri","sequence":"additional","affiliation":[{"name":"Division of Rheumatology, Mayo Clinic Florida, Jacksonville, FL 32224, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"suffix":"Jr.","given":"Ronald R.","family":"Butendieck","sequence":"additional","affiliation":[{"name":"Division of Rheumatology, Mayo Clinic Florida, Jacksonville, FL 32224, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7831-4208","authenticated-orcid":false,"given":"Anushka","family":"Irani","sequence":"additional","affiliation":[{"name":"Division of Rheumatology, Mayo Clinic Florida, Jacksonville, FL 32224, USA"},{"name":"Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford OX1 2JD, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2024,12,11]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"568","DOI":"10.1002\/art.38905","article-title":"The prevalence of fibromyalgia in the general population: A comparison of the American College of Rheumatology 1990, 2010, and modified 2010 classification criteria","volume":"67","author":"Jones","year":"2015","journal-title":"Arthritis Rheumatol."},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"1382","DOI":"10.1097\/j.pain.0000000000000507","article-title":"Do we need a third mechanistic descriptor for chronic pain states?","volume":"157","author":"Kosek","year":"2016","journal-title":"Pain"},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"347","DOI":"10.1038\/s41582-024-00966-8","article-title":"Deciphering nociplastic pain: Clinical features, risk factors and potential mechanisms","volume":"20","author":"Kaplan","year":"2024","journal-title":"Nat. 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