Patients with a rare pain condition that can cause people to despise a part of the body so much that they want it amputated are struggling to get a correct and speedy diagnosis because of the lack of awareness surrounding the disorder, according to a rehabilitation expert. People with complex regional pain syndrome (CRPS) suffer a chronic burning pain in one of their limbs, usually after a minor injury. In the past some believed the condition was psychosomatic, but that theory was disproved by research showing that people with CRPS undergo very real physical changes in their nervous system. It has been estimated to affect 26 in 100,000 people, and the rarity and peculiarity of it makes it difficult to spot, according to Gill Thurlow, consultant nurse at the Royal National orthopedic hospital (RNOH), which offers a specialist program admitting in-patients with CRPS. Theyve often been through a journey by the time they get to us, she said. It can be a difficult journey. Some of the symptoms are very particular. I would imagine most GPs dont see one [case] in their career, let alone often. It is unusual. Its fair to say its poorly recognized. The diagnostics are quite clear, but its about having that right mindset to think about it as a diagnosis. Thurlow said some patients were reluctant to seek help because of fear of the reaction they would get. You dont necessarily want to go to the GP and say, I really hate my leg and I want to cut if off; I dont like that its part of me for fear it might prompt a referral to a psychiatrist. Rachel Bagshaw, a 33-year-old theatre director from Crouch End, north London, experienced severe pain after she fell while running and suffered a serious injury to a tendon in her right leg in 1999. She said she experienced a feeling of not wanting it to be near. It took 18 months before CRPS was diagnosed and she did not get proper treatment until 2007. Nobody could really get to the bottom of it, she said. The big thing I experienced was, It must be in your mind. We cant see any reason why this should hurt as much as it does. Thats something people with CRPS experience. At the RNOH, which runs a three-week in-patient program, the focus is on retraining the brain and desensitizing it to pain. One therapy uses a mirror placed so the patient can see only the good limb and its reflection, so they are tricked into thinking they have two healthy limbs. Bagshaw said that treatment for CRPS, first at Royal National Hospital for Rheumatic Diseases, in Bath, and then at RNOH, had helped her in accepting the limb for what it is and regaining some ownership over it. She still has a lot of pain – her right leg cannot bear weight, so she uses a wheelchair or crutches – but her leg feels less sensitive. I hope people get the treatment faster than I did because the earlier you can get the treatment, the bigger the impact, she said.
Posted on: Wed, 05 Mar 2014 14:08:13 +0000
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