1. Kiernan MC, Vucic S, Cheah BC, Turner MR, Eisen A, Hardiman O, et al. Amyotrophic lateral sclerosis. Lancet 2011;377:942–55.
2. Brooks BR. El Escorial World Federation of Neurology criteria for the diagnosis of amyotrophic lateral sclerosis. J Neurol Sci 1994;124(Suppl):96–107.
3. Brooks BR, Miller RG, Swash M, Munsat TL; World Federation of Neurology Research Group on Motor Neuron Diseases. El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord 2000;1:293–9.
4. de Carvalho M, Dengler R, Eisen A, England JD, Kaji R, Kimura J, et al. Electrodiagnostic criteria for diagnosis of ALS. Clin Neurophysiol 2008;119:497–503.
7. Renton AE, Majounie E, Waite A, Simón-Sánchez J, Rollinson S, Gibbs JR, et al. A hexanucleotide repeat expansion in C9ORF72 is the cause of chromosome 9p21-linked ALS-FTD. Neuron 2011;72:257–68.
8. Burrell JR, Kiernan MC, Vucic S, Hodges JR. Motor neuron dysfunction in frontotemporal dementia. Brain 2011;134(Pt 9):2582–94.
9. Drake ME Jr. Chronic pain syndrome in amyotrophic lateral sclerosis. Arch Neurol 1983;40:453–4.
10. de Castro-Costa CM, Oriá RB, Machado-Filho JA, Franco MT, Diniz DL, Giffoni SD, et al. Amyotrophic lateral sclerosis: clinical analysis of 78 cases from Fortaleza (northeastern Brazil). Arq Neuropsiquiatr 1999;57(3B):761–74.
11. Ganzini L, Johnston WS, Hoffman WF. Correlates of suffering in amyotrophic lateral sclerosis. Neurology 1999;52:1434–40.
12. Åkerblom Y, Jakobsson Larsson B, Zetterberg L, Åsenlöf P. The multiple faces of pain in motor neuron disease: a qualitative study to inform pain assessment and pain management. Disabil Rehabil 2020;42:2123–32.
14. Raheja D, Stephens HE, Lehman E, Walsh S, Yang C, Simmons Z. Patient-reported problematic symptoms in an ALS treatment trial. Amyotroph Lateral Scler Frontotemporal Degener 2016;17:198–205.
15. Wallace VC, Ellis CM, Burman R, Knights C, Shaw CE, Al-Chalabi A. The evaluation of pain in amyotrophic lateral sclerosis: a case controlled observational study. Amyotroph Lateral Scler Frontotemporal Degener 2014;15:520–7.
18. Brettschneider J, Kurent J, Ludolph A. Drug therapy for pain in amyotrophic lateral sclerosis or motor neuron disease. Cochrane Database Syst Rev 2013;2013:CD005226.
20. Truini A, Biasiotta A, Onesti E, Di Stefano G, Ceccanti M, La Cesa S, et al. Small-fibre neuropathy related to bulbar and spinal-onset in patients with ALS. J Neurol 2015;262:1014–8.
23. Pizzimenti A, Aragona M, Onesti E, Inghilleri M. Depression, pain and quality of life in patients with amyotrophic lateral sclerosis: a cross-sectional study. Funct Neurol 2013;28:115–9.
24. Jensen MP, Abresch RT, Carter GT, McDonald CM. Chronic pain in persons with neuromuscular disease. Arch Phys Med Rehabil 2005;86:1155–63.
25. Hurwitz N, Radakovic R, Boyce E, Peryer G. Prevalence of pain in amyotrophic lateral sclerosis: a systematic review and meta-analysis. Amyotroph Lateral Scler Frontotemporal Degener 2021;22:449–58.
26. Chiò A, Mora G, Lauria G. Pain in amyotrophic lateral sclerosis. Lancet Neurol 2017;16:144–57.
30. An R, Li Y, He X, Li C, Li X, Xu Y, et al. The evaluation of pain with nociceptive and neuropathic characteristics from three different perspectives in amyotrophic lateral sclerosis patients: a case controlled observational study in Southwestern China. Neural Plast 2021;2021:5537892.
31. van Hecke O, Austin SK, Khan RA, Smith BH, Torrance N. Neuropathic pain in the general population: a systematic review of epidemiological studies. Pain 2014;155:654–62.
33. Miller RG, Mitchell JD, Moore DH. Riluzole for amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND). Cochrane Database Syst Rev 2012;2012:CD001447.
34. Moon ES, Karadimas SK, Yu WR, Austin JW, Fehlings MG. Riluzole attenuates neuropathic pain and enhances functional recovery in a rodent model of cervical spondylotic myelopathy. Neurobiol Dis 2014;62:394–406.
35. Poupon L, Lamoine S, Pereira V, Barriere DA, Lolignier S, Giraudet F, et al. Targeting the TREK-1 potassium channel via riluzole to eliminate the neuropathic and depressive-like effects of oxaliplatin. Neuropharmacology 2018;140:43–61.
38. Paganoni S, Macklin EA, Lee A, Murphy A, Chang J, Zipf A, et al. Diagnostic timelines and delays in diagnosing amyotrophic lateral sclerosis (ALS). Amyotroph Lateral Scler Frontotemporal Degener 2014;15:453–6.
39. Belsh JM, Schiffman PL. Misdiagnosis in patients with amyotrophic lateral sclerosis. Arch Intern Med 1990;150:2301–5.
40. Chiò A. ISIS Survey: an international study on the diagnostic process and its implications in amyotrophic lateral sclerosis. J Neurol 1999;246(Suppl 3):III1–5.
41. Cellura E, Spataro R, Taiello AC, La Bella V. Factors affecting the diagnostic delay in amyotrophic lateral sclerosis. Clin Neurol Neurosurg 2012;114:550–4.
42. Househam E, Swash M. Diagnostic delay in amyotrophic lateral sclerosis: what scope for improvement? J Neurol Sci 2000;180:76–81.
43. Miller TM, Layzer RB. Muscle cramps. Muscle Nerve 2005;32:431–42.
46. Mayer NH. Clinicophysiologic concepts of spasticity and motor dysfunction in adults with an upper motoneuron lesion. Muscle Nerve Suppl 1997;6:S1–13.
47. Verschueren A, Grapperon AM, Delmont E, Attarian S. Prevalence of spasticity and spasticity-related pain among patients with amyotrophic lateral sclerosis. Rev Neurol (Paris) 2021;177:694–8.
48. Smart KM, Blake C, Staines A, Doody C. Clinical indicators of ‘nociceptive’, ‘peripheral neuropathic’ and ‘central’ mechanisms of musculoskeletal pain: a Delphi survey of expert clinicians. Man Ther 2010;15:80–7.
49. Borasio GD, Shaw PJ, Hardiman O, Ludolph AC, Sales Luis ML, Silani V, et al. Standards of palliative care for patients with amyotrophic lateral sclerosis: results of a European survey. Amyotroph Lateral Scler Other Motor Neuron Disord 2001;2:159–64.
50. Ho DT, Ruthazer R, Russell JA. Shoulder pain in amyotrophic lateral sclerosis. J Clin Neuromuscul Dis 2011;13:53–5.
51. Hayashi T, Narita Y, Okugawa N, Hamaguchi E, Shibahara M, Kuzuhara S. Pressure ulcers in ALS patients on admission at a university hospital in Japan. Amyotroph Lateral Scler 2007;8:310–3.
52. Hirano YM, Yamazaki Y, Shimizu J, Togari T, Bryce TJ. Ventilator dependence and expressions of need: a study of patients with amyotrophic lateral sclerosis in Japan. Soc Sci Med 2006;62:1403–13.
53. Rivera I, Ajroud-Driss S, Casey P, Heller S, Allen J, Siddique T, et al. Prevalence and characteristics of pain in early and late stages of ALS. Amyotroph Lateral Scler Frontotemporal Degener 2013;14:369–72.
54. Wigand B, Schlichte I, Schreiber S, Heitmann J, Meyer T, Dengler R, et al. Characteristics of pain and the burden it causes in patients with amyotrophic lateral sclerosis: a longitudinal study. Amyotroph Lateral Scler Frontotemporal Degener 2022;23:284–91.
57. Adelman EE, Albert SM, Rabkin JG, Del Bene ML, Tider T, O’Sullivan I. Disparities in perceptions of distress and burden in ALS patients and family caregivers. Neurology 2004;62:1766–70.
59. National Institute for Health and Care Excellence (NICE). NICE guideline. Motor neuron disease: assessment and management [Internet]. London: NICE; 2016 [cited 2022 May 8].
https://www.nice.org.uk/guidance/ng42.
63. Baldinger R, Katzberg HD, Weber M. Treatment for cramps in amyotrophic lateral sclerosis/motor neuron disease. Cochrane Database Syst R 2012;(4):CD004157.
66. McClelland S 3rd, Bethoux FA, Boulis NM, Sutliff MH, Stough DK, Schwetz KM, et al. Intrathecal baclofen for spasticity-related pain in amyotrophic lateral sclerosis: efficacy and factors associated with pain relief. Muscle Nerve 2008;37:396–8.