Neuropathic pain in Charcot-Marie-Tooth disease

Objectives: To determine the frequency and extent to which subjects with Ch arcot-Marie-Tooth (CMT) disease report pain and to compare qualities of pai n in CMT to other painful neuropathic conditions. Study Design: Descriptive, nonexperimental survey, using a previously valid ated measurement tool, the Neuropathic Pain Scale (NPS). Participants: Participants were recruited from the membership raster of a w orldwide CMT support organization. Main Outcome Measures: NPS pain descriptors reported in CMT were compared w ith those reported by subjects with postherpetic neuralgia (PHN), complex r egional pain syn drome, type 1 (CRPS-1), also known as reflex sympathetic d ystrophy, diabetic neuropathy (DN), and peripheral nerve injury (PNI). Results: Of 617 CMT subjects (40% response rate), 440 (71%) reported pain, with the most severe pain sites noted as low back (70%), knees (53%), ankle s (50%), toes (46%), and feet (44%). Of this group, 171 (39%) reported inte rruption of activities of daily living by pain; 168 (38%) used non-narcotic pain medication and 113 (23%) used narcotics and/or benzodiazepines for pa in. The use of pain description was similar for CMT, PHN, CRPS-1, DN, and P NI in terms of intensity and the descriptors hot, dull, and deep. Conclusions: Neuropathic pain is a significant problem for many people with CMT The frequency and intensity of pain reported in CMT is comparable in m any ways to PHN, CRPS-1, DN, and PNI. Further studies are needed to examine possible pain generators and pharmacologic and rehabilitative modalities t o treat pain in CMT. (C) 1998 by the American Congress of Rehabilitation Me dicine and the American Academy of Physical Medicine and Rehabilitation.