Proof of pain with CMT

[Guest guest]

(I know that some of you do not have pain. This is to help the CMTers who DO.)

If you need to prove to a physician that some CMTers have pain, you could

print this out to take with you when needed.

http://www.kaikracht.de/cmt/english/text_pa3.htm

Neuropathic pain in Charcot-Marie-Tooth disease

This is the official scientific document of the research group at the

University of Washington, Seattle, with the results of their investigations

concerning pain in CMT disease.

GT, Jensen MP, Galer BS, Kraft GH, Crabtree LD, Beardsley RM, Abresch

RT, Bird TD

Department of Rehabilitation Medicine, University of Washington School of

Medicine, Seattle, USA.

OBJECTIVES: To 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 DESIGN: Descriptive, nonexperimental survey, using a previously

validated measurement tool, the Neuropathic Pain Scale (NPS).

PARTICIPANTS: Participants were recruited from the membership roster of a

worldwide CMT support organization.

MAIN OUTCOME MEASURES: NPS 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).

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%), 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.

CONCLUSIONS: Neuropathic 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.

------------------------------------------------------------------------

Published in:

ARCHIVES OF PHYSICAL MEDICINE REHABILITATION

December 1998, Volume 79, pages 1560-1564

Kathleen

Seattle USA

" A lie gets halfway around the world before the truth has a chance to get its

pants on. "

- Sir Winston Churchill

http://www.icewindow.com

KathleenLS@...