Characteristics of pain in amyotrophic lateral sclerosis

Brain Behav. 2015 Mar;5(3):e00296. doi: 10.1002/brb3.296. Epub 2015 Jan 21.


Background: Pain is an often underestimated and neglected symptom in amyotrophic lateral sclerosis (ALS).

Methods: In a cross-sectional survey, 46 patients with ALS, 46 age- and gender matched population-based controls, and 23 diseased controls with myotonic dystrophy type 2 (DM2) were screened for occurrence, type, distribution, and treatment of pain and cramps. Data were collected with the use of the short form brief pain inventory (BPI).

Results: Pain was reported in 78% of ALS patients,79% of DM2 patients, and 54% of controls (P<0.05). More ALS patients than controls reported moderate to severe pain (42% vs. 20%). Pain in ALS patients interfered significantly more with daily activities than in controls (median pain interference score: 3.0 vs. 1.2, P<0.05), especially enjoyment of life (5.0 vs. 1.0) and mood (3.0 vs. 1.0). There was no correlation between the duration of the disease and the severity of pain. Movement-induced cramps were reported in 63% of ALS patients, mostly in the distal extremities. There was no difference in the duration of ALS disease between patients reporting cramps and those who did not.

Discussion: Our study showed that pain was a relatively frequent symptom which had an important impact on the quality of life. Pain that requires treatment can occur at every stage of ALS.

Keywords: Amyotrophic lateral sclerosis; cramps; motor neuron disease; pain; spasticity.

MeSH terms

  • Activities of Daily Living
  • Adult
  • Aged
  • Amyotrophic Lateral Sclerosis* / complications
  • Amyotrophic Lateral Sclerosis* / diagnosis
  • Amyotrophic Lateral Sclerosis* / epidemiology
  • Cross-Sectional Studies
  • Female
  • Germany / epidemiology
  • Humans
  • Male
  • Middle Aged
  • Muscle Cramp* / epidemiology
  • Muscle Cramp* / etiology
  • Muscle Cramp* / physiopathology
  • Muscle Cramp* / therapy
  • Musculoskeletal Pain* / diagnosis
  • Musculoskeletal Pain* / epidemiology
  • Musculoskeletal Pain* / etiology
  • Musculoskeletal Pain* / physiopathology
  • Musculoskeletal Pain* / psychology
  • Musculoskeletal Pain* / therapy
  • Myotonic Dystrophy* / complications
  • Myotonic Dystrophy* / diagnosis
  • Myotonic Dystrophy* / epidemiology
  • Pain Management / methods
  • Pain Measurement / methods
  • Prevalence
  • Quality of Life / psychology*
  • Research Design
  • Severity of Illness Index