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Can looking in a mirror cure agonising pain?
The pain in her left leg was so terrible that Suzie Knight begged her doctors to amputate it.
Two years previously she'd fallen and sprained ankle - but gradually the pain worsened until, by January 2003, it was so agonising it felt 'as though my leg was permanently stuck in a burning flame'.
The "gutsy, fit lass" from Yorkshire, a hard-working nurse practitioner who loved dancing and going to the gym, became wheelchair-bound.
The pain was so bad she couldn't eat, sleep or move; she lost two-and-a-half stone and was under constant medication, but this barely touched the pain. She couldn't bear the feel of a breeze on her ankle, let alone socks and shoes.
Yet an MRI scan had found nothing wrong with her. Doctor after doctor told her she was imagining the pain.
Suzie, 41, a mother of two, suffered depression - and it was this that finally led to her getting a diagnosis. A trainee GP treating her for the depression recognised her symptoms as reflex sympathetic dystrophy (RSD), which is also known as complex regional pain syndrome (CRPS).
Around 11,500 people in Britain are affected by RSD - it is the most severe of a group of disorders characterised by severe pain that has no detectable cause, seems out of proportion to the original injury and does not respond to painkillers.
Other conditions in this group include repetitive strain injury, fibromyalgia and chronic fatigue syndrome.
They are triggered by stress, injury or a virus, and result in symptoms, including tremors and extreme sensitivity, that can persist for years, even a lifetime.
As many as one in seven of the population is thought to be affected, but it's only recently that the medical profession has recognised these disorders - even now, patients must deal with some doctors' refusal to treat their case seriously.
A new book, Insight Into Pain And Suffering, published next week, has an introduction by Carol Black, President Royal College of Physicians, in which she criticises fellow doctors for disbelieving sufferers, saying: "This cruel, isolating and often intractable suffering has too often been the object of hasty and sometimes heartless judgments."
It was actually amputees, or rather the pain that seven out of ten of them suffer in the limb or digit that they have lost, that first helped neuroscientists in the early Nineties to begin to understand how medically unexplained pain might be understood and treated.
"Even today, many doctors will not take phantom limb pain seriously. But it's actually very logical," says Peter Halligan, Professor of Psychology at Cardiff University. "We may feel pain in the leg or ankle - but we actually experience it in the brain.
"So it should be no surprise that when you lose a leg, the pain continues."
Early studies at the University of California found that a carefully angled mirror, allowing the amputee to watch the remaining leg moving up and down while imagining that both legs were making the same movements, was able to reduce or even eradicate the phantom pain.
Five years ago, researchers at the Royal National Hospital for Rheumatic Diseases in began a series of studies at whether visual feedback from mirrors could also be used to treat medically unexplained pain.
The research showed that it worked, and now the treatment is available at the hospital as well as a growing number of physiotherapists nationwide.
So far, the therapy works only when one half of the body is affected by pain, as is the case with RSD. And it's not always successful then, especially for people who have had the symptoms for several years.
Suzie recalls arriving at the hospital and being asked by the doctor how she felt about her leg. "I told him I hated it and everything it had done to me, and that I wanted to have it amputated. He told me that I wasn't to worry, that I almost certainly had RSD and I could be helped."
She was taught to try to move both ankles together while watching her right leg in a mirror so that it appeared to be her left leg. "Early on, it was very difficult to focus. I'd pretend to play the piano with my toes while thinking hard about how well both my legs were performing."
Gradually, by repeating the exercise several times a day, the stiffness began to be released, her foot became more flexible and she was able to rotate her ankles.
"It's all about retraining the brain," says Dr Candy McCabe, one of the authors of Insight Into Pain And Suffering. "The truth is that this technique has been used for generations. Every mother knows that distracting a baby before an injection lessens the pain."
This first step allowed Suzie to tolerate a programme of physio and hydrotherapy. She got "wonderful" support from RSD-UK, a charity set up by fellow sufferer Catherine Taylor in 2000 to provide telephone counselling, information, an annual conference and, above all, mutual support from fellow members.
She was also given desensitisation training, learning to tolerate first the touch of feathers and silk, gradually building up to wearing a pair of slippers last December.
She wore her first pair of proper shoes in February - though they're flat and her much loved high-heeled boots have had to remain in the cupboard. "It's not a miracle cure," she says. "It's a long, slow haul: you start off doing everything for a couple of minutes and gradually build up.
"I've had to be persistent, positive and have had to pace myself. I used to be a whirlwind of activity, with a finger in every pie and always watching my weight.
"Now I'm a size 12, back at work but taking it much easier, and happier than ever."
Insight Into Pain And Suffering, by David Blake, Jenny Lewis, Candy McCabe and Catherine Taylor, is published by Amazon on June 14 at £19.99. To order a copy, call 0845 2266008.
4 people have commented on this story so far.
Here's a sample of the latest comments published.
Good article. I am getting HBOT for my RSD. I am in a pressure chamber and breath 100% pure oxgen.
So far it has helped some.
What your story says is how HBOT works. The diease centers in the brain, so flooding the brain with oxgen (right now I have some buzzing in my brain, that shows lack of oxgen) can they say help stop the RSD as it centers in the brain.
In my first 3 sessions I had ligher pressure and the buzzing left but I had to get more pressure to help the pain in my legs from the RSD.
At present I am going back to lighter pressure to try to get my brain to "Switch back" to the normal central nervous system, more or less re-setting my brain I hope.
I have had block shots and I am one of the lucky ones and have had the horrbile burning pain leave.
Now I just have to over come my weakened legs and some off the numbness in my left eye area.
Before the HBOT my entire face was numb but not now.
From what I read HBOT is low priced in the UK not like here in the states.
- John Johnson, Westminster Ca USA
How can it be suggested that RSD is simply ''in the mind'' and it can be cured by a simple mirror technique? This is most misleading. My mother has suffered from debilitating RSD for the last three years. She is not making it all up. It is both undermining the campaign to raise awareness of the condition and giving people false hope. The article gives the impression that people with RSD can be treated with just a mirror. No word about the heavy doses of complex painkillers or the spinal taps that are sometimes needed in order to make using the mirror possible. I am exceptionally pleased for Mrs Knight but your article makes it sound as this mirror will work for all. It will not. My mum has enough problems gaining recognition for her condition without this sort of article. The mirror test is in its earliest stages, at the moment it is not a panacea.
- Leighton, Cardiff, South Wales
My wife has suffered from RSD for 15 years, starting in one hand and now full body. When she had her accident the consultant indicated the pain was in her mind because she was making a compensation claim and was trying to get more money then her injury warranted.
In desperation she settled early so he would believe her. By this time it was too late for any effective treatment, as the disease needs to be diagnosed early for treatment to be affective.
Things are getting better now as people are made more aware of this terrible condition