The Language of Pain in the Hypermobile Ehlers-Danlos Syndrome: Metaphors as a Key to Understanding the Experience of Pain and as a Rehabilitation Tool

doi:10.3390/brainsci13071042

. 2023 Jul 8;13(7):1042.

doi: 10.3390/brainsci13071042.

The Language of Pain in the Hypermobile Ehlers-Danlos Syndrome: Metaphors as a Key to Understanding the Experience of Pain and as a Rehabilitation Tool

Filippo Camerota¹, Rachele Mariani², Giulia Cordiano³, Michela Di Trani², Valentina Lodato⁴, Alessandro Ferraris⁴, Massimo Pasquini⁵, Claudia Celletti¹

Affiliations

¹ Physical Medicine and Rehabilitation, Umberto I University Hospital, 00161 Rome, Italy.
² Department of Dynamic and Clinical Psychology, and Health Studies Sapienza, University of Rome, 00133 Rome, Italy.
³ Fondazione Don Carlo Gnocchi, 00186 Rome, Italy.
⁴ Laboratory of Medical Genetics, Department of Experimental Medicine, San Camillo Forlanini Hospital, Sapienza University of Rome, 00185 Rome, Italy.
⁵ Department of Human Neurosciences, Sapienza University of Rome, 00185 Rome, Italy.

PMID: 37508973
PMCID: PMC10377642
DOI: 10.3390/brainsci13071042

The Language of Pain in the Hypermobile Ehlers-Danlos Syndrome: Metaphors as a Key to Understanding the Experience of Pain and as a Rehabilitation Tool

Filippo Camerota et al. Brain Sci. 2023.

. 2023 Jul 8;13(7):1042.

doi: 10.3390/brainsci13071042.

Authors

Filippo Camerota¹, Rachele Mariani², Giulia Cordiano³, Michela Di Trani², Valentina Lodato⁴, Alessandro Ferraris⁴, Massimo Pasquini⁵, Claudia Celletti¹

Affiliations

¹ Physical Medicine and Rehabilitation, Umberto I University Hospital, 00161 Rome, Italy.
² Department of Dynamic and Clinical Psychology, and Health Studies Sapienza, University of Rome, 00133 Rome, Italy.
³ Fondazione Don Carlo Gnocchi, 00186 Rome, Italy.
⁴ Laboratory of Medical Genetics, Department of Experimental Medicine, San Camillo Forlanini Hospital, Sapienza University of Rome, 00185 Rome, Italy.
⁵ Department of Human Neurosciences, Sapienza University of Rome, 00185 Rome, Italy.

PMID: 37508973
PMCID: PMC10377642
DOI: 10.3390/brainsci13071042

Abstract

Ehlers-Danlos syndromes are a heterogeneous group of Heritable Connective Tissue Disorders characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. Among the different types, the hypermobile Ehlers-Danlos syndrome is the most frequent and includes generalized joint hypermobility as the major diagnostic criterion. Joint hypermobility in hypermobile Ehlers-Danlos syndrome is often associated with pain that does not always allow the use of effective pain-reducing treatments. Patients with hEDS constantly describe their pain in detail. Eighty-nine patients with hEDS diagnoses were recruited and evaluated. They were asked to describe their pain in writing. The texts were examined through Linguistic Inquiry and Word Count. Correlational analyses were conducted between pain perception and language. A comparison of high/low pain perception and the quality of metaphors was carried out. The results showed that language quality varies depending on how much pain is perceived. The greater the pain is perceived, the lesser the positive effects and the greater the negative effects and dehumanizing metaphors are being used. Moreover, a greater pain seems to be related to a verbal experience of greater isolation and less self-care. In conclusion, the use of metaphors is a useful tool for examining illness experience and may help clinicians in the rehabilitation program.

Keywords: chronic pain; hypermobile Ehlers–Danlos syndrome; linguistic content analysis; metaphors; pain; symbolizing process.

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Conflict of interest statement

The authors declare no conflict of interest.

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References

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[1] Malfait F., Castori M., Francomano C.A., Giunta C., Kosho T., Byers P.H. The Ehlers-Danlos syndromes. Nat. Rev. Dis. Prim. 2020;6:64. doi: 10.1038/s41572-020-0194-9. - DOI - PubMed

[2] Malfait F., Castori M., Francomano C.A., Giunta C., Kosho T., Byers P.H. The Ehlers-Danlos syndromes. Nat. Rev. Dis. Prim. 2020;6:64. doi: 10.1038/s41572-020-0194-9. - DOI - PubMed

[3] Malfait F., Francomano C., Byers P., Belmont J., Berglund B., Black J., Bloom L., Bowen J.M., Brady A.F., Burrows N.P., et al. The 2017 international classification of the Ehlers-Danlos syndromes. Am. J. Med. Genet. Part C Semin. Med. Genet. 2017;175:8–26. doi: 10.1002/ajmg.c.31552. - DOI - PubMed

[4] Malfait F., Francomano C., Byers P., Belmont J., Berglund B., Black J., Bloom L., Bowen J.M., Brady A.F., Burrows N.P., et al. The 2017 international classification of the Ehlers-Danlos syndromes. Am. J. Med. Genet. Part C Semin. Med. Genet. 2017;175:8–26. doi: 10.1002/ajmg.c.31552. - DOI - PubMed

[5] Di Giosaffatte N., Ferraris A., Gaudioso F., Lodato V., Savino E., Celletti C., Camerota F., Bargiacchi S., Laino L., Majore S., et al. Congenital Defects in a Patient Carrying a Novel Homozygous AEBP1 Variant: Further Expansion of the Phenotypic Spectrum of Ehlers-Danlos Syndrome Classical-like Type 2? Genes. 2022;14:2358. doi: 10.3390/genes13122358. - DOI - PMC - PubMed

[6] Di Giosaffatte N., Ferraris A., Gaudioso F., Lodato V., Savino E., Celletti C., Camerota F., Bargiacchi S., Laino L., Majore S., et al. Congenital Defects in a Patient Carrying a Novel Homozygous AEBP1 Variant: Further Expansion of the Phenotypic Spectrum of Ehlers-Danlos Syndrome Classical-like Type 2? Genes. 2022;14:2358. doi: 10.3390/genes13122358. - DOI - PMC - PubMed

[7] Yamaguchi T., Hayashi S., Nagai S., Uchiyama A., Motegi S.I., Fujikawa T., Takiguchi Y., Kosho T. Case report: Further delineation of AEBP1-related Ehlers–Danlos Syndrome (classical-like EDS type 2) in an additional patient and comprehensive clinical and molecular review of the literature. Front. Genet. 2023;14:1102101. doi: 10.3389/fgene.2023.1102101. - DOI - PMC - PubMed

[8] Yamaguchi T., Hayashi S., Nagai S., Uchiyama A., Motegi S.I., Fujikawa T., Takiguchi Y., Kosho T. Case report: Further delineation of AEBP1-related Ehlers–Danlos Syndrome (classical-like EDS type 2) in an additional patient and comprehensive clinical and molecular review of the literature. Front. Genet. 2023;14:1102101. doi: 10.3389/fgene.2023.1102101. - DOI - PMC - PubMed

[9] Castori M., Tinkle B., Levy H., Grahame R., Malfait F., Hakim A. A framework for the classification of joint hypermobility and related conditions. Am. J. Med. Genet. Part C Semin. Med. Genet. 2017;175:148–157. doi: 10.1002/ajmg.c.31539. - DOI - PubMed

[10] Castori M., Tinkle B., Levy H., Grahame R., Malfait F., Hakim A. A framework for the classification of joint hypermobility and related conditions. Am. J. Med. Genet. Part C Semin. Med. Genet. 2017;175:148–157. doi: 10.1002/ajmg.c.31539. - DOI - PubMed

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The Language of Pain in the Hypermobile Ehlers-Danlos Syndrome: Metaphors as a Key to Understanding the Experience of Pain and as a Rehabilitation Tool

Affiliations

The Language of Pain in the Hypermobile Ehlers-Danlos Syndrome: Metaphors as a Key to Understanding the Experience of Pain and as a Rehabilitation Tool

Authors

Affiliations

Abstract

Conflict of interest statement

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Abstract

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