• G T Carter, M P Jensen, B S Galer, G H Kraft, L D Crabtree, R M Beardsley, R T Abresch, and T D Bird.
• Department of Rehabilitation Medicine, University of Washington School of Medicine, Seattle, USA.
• Arch Phys Med Rehabil. 1998 Dec 1;79(12):1560-4.

ObjectivesTo determine the frequency and extent to which subjects with Charcot-Marie-Tooth (CMT) disease report pain and to compare qualities of pain in CMT to other painful neuropathic conditions.Study DesignDescriptive, nonexperimental survey, using a previously validated measurement tool, the Neuropathic Pain Scale (NPS).ParticipantsParticipants were recruited from the membership roster of a worldwide CMT support organization.Main Outcome MeasuresNPS pain descriptors reported in CMT were compared with those reported by subjects with postherpetic neuralgia (PHN), complex regional pain syndrome, type 1 (CRPS-1), also known as reflex sympathetic dystrophy, diabetic neuropathy (DN), and peripheral nerve injury (PNI).ResultsOf 617 CMT subjects (40% response rate), 440 (71%) reported pain. with the most severe pain sites noted as low back (70%), knees (53%), ankles (50%), toes (46%), and feet (44%). Of this group, 171 (39%) reported interruption of activities of daily living by pain; 168 (38%) used non-narcotic pain medication and 113 (23%) used narcotics and/or benzodiazepines for pain. The use of pain description was similar for CMT, PHN, CRPS-1, DN, and PNI in terms of intensity and the descriptors hot, dull, and deep.ConclusionsNeuropathic pain is a significant problem for many people with CMT. The frequency and intensity of pain reported in CMT is comparable in many ways to PHN, CRPS-1, DN. and PNI. Further studies are needed to examine possible pain generators and pharmacologic and rehabilitative modalities to treat pain in CMT.

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