Diagnoses too slow for rare pain condition
From The Guardian late last year:
“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 Orthopaedic hospital (RNOH), which offers a specialist programme admitting in-patients with CRPS.
“They’ve 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 don’t see one [case] in their career, let alone often. It is unusual. It’s fair to say it’s poorly recognised. The diagnostics are quite clear, but it’s 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 don’t necessarily want to go to the GP and say, ‘I really hate my leg and I want to cut if off; I don’t like that it’s 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 can’t see any reason why this should hurt as much as it does.’ That’s something people with CRPS experience.”
At the RNOH, which runs a three-week in-patient programme, the focus is on retraining the brain and desensitising 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.”
There might be a little “lost in translation” here with the notions of ‘desensitising the brain to pain’ and ‘tricking people into thinking that have two healthy limbs’ but some hints of Graded Motor Imagery in the treatment approach.
Easily one of the best resources for CRPS information is bodyinmind.org. An onsite search for CRPS there will deliver a trove of brilliant, up to date posts, links and information.
– Tim Cocks
I note the Guardian’s use of “retraining the brain” – The phrase seems to be increasingly used by clinicians and I don’t think it’s healthy – a bit like “I’ll put your back back in for you”. Notions of “retraining” tend to makes the brain a passive object of therapy and are we a bit up ourselves if we think we can retrain such an organ. And where did the “re” come from anyway?