The evaluation of pain in amyotrophic lateral sclerosis: A case controlled observational study

Victoria C J Wallace, Cathy M Ellis, Rachel Burman, Catherine Knights, Christopher E Shaw, Ammar Al-Chalabi

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Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disorder leading to progressive paralysis. ALS is complicated by a number of non-motor symptoms including pain. Pain in ALS has been poorly studied and poorly managed. This study aimed to collate information regarding pain in ALS using standardized pain questionnaires. Forty-two patients with ALS participated in the study. Control subjects included 41 age-matched healthy volunteers and 42 age-matched patients with neurological conditions other than ALS. Data on pain were collected using the The Brief Pain Inventory and The painDetect Questionnaire. Eighty-five percent of subjects with ALS reported pain versus 50% of neurology clinic controls and 35% of healthy controls (p < 0.01). Pain in ALS included cramping, aching, tiring, sharp and tender, and was non-neuropathic. Pain impacted significantly on mood, general activity, relationships and general enjoyment of life. Fifty-four percent of people with painful ALS used regular analgesia and 29% regular opioids. Other non-motor symptoms suffered included tiredness, constipation, urinary problems, itching and drowsiness. In conclusion, these data support the fact that pain is a significant symptom in ALS which impacts on quality of life. These data can be used to educate clinicians and patients to promote better multidisciplinary management of ALS symptoms and a better quality of life.
Original languageEnglish
Number of pages8
JournalAmyotrophic lateral sclerosis & frontotemporal degeneration
Publication statusE-pub ahead of print - 2014


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