Characteristics of pain in amyotrophic lateral sclerosis

Abstract

BackgroundPain is an often underestimated and neglected symptom in amyotrophic lateral sclerosis (ALS).MethodsIn 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).ResultsPain 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.DiscussionOur 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.

The role of mental health and self-efficacy in the pain experience of patients with amyotrophic lateral sclerosis

“…Pain in our series was, on average, moderate in intensity, but was severe in some patients, and a barrier to daily life activities. Similar findings have been observed by others (2,3,6) and by us in a previous series of patients recruited by a different method (23). Importantly, relief as a result of pain treatments was not impressive, averaging less than 50% (100% ¼ complete relief).…”

“…Nearly a quarter of the sample experienced no pain relief, and this is a major concern. Others have found that the use of opioids is common, yet those same series demonstrate significant average pain (2,3,6). It is unknown whether the poor pain control is due to lack of adequate assessment of pain by the health care team, ineffective treatments, or other causes, but it certainly is meaningful that almost 30% of our study patients were not receiving any treatment for their pain.…”

“…It is experienced in all stages of the disease, and has a moderately severe impact on patients' daily activities (1)(2)(3)(4)(5)(6). Many factors contribute to pain in these patients, including muscle atrophy, damage to connective tissue, increased strain on joints, joint contractures and discomfort from pressure due to limited mobility, and muscle cramps and spasms (4).…”

Critical Review of Complementary and Alternative Medicine Use in Amyotrophic Lateral Sclerosis: Prevalence and Users’ Profile, Decision-Making, Information Seeking, and Disclosure in the Face of a Lack of Efficacy

“…Approximately half of the ALS patients used more than five CAM in a Chinese study [19]. Additionally, three studies undertaken in Germany and China identified most ALS patients as concurrently using CAM alongside riluzole [18][19][20].…”

“…Concerning the relief of ALS symptoms via CAM use, magnesium and acupuncture/massage therapy have been used for the management of ALS-related cramps and pain, respectively [20], and Chinese medicine was found to be used for weakness and fatigue, muscle atrophy, and/or limb pain [19].…”