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24 September 2014
Inside Out: Surprising Stories, Familiar Places

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   Coming Up : Inside Out - East: Friday February 16, 2007
Trudy Lapinski
"I could not imagine anything worse for a human being to suffer from."
Surgeon Chris Chandler

Trudy's story -
Reflex Sympathetic Dystrophy

When Trudy Lapinskis, from Whittlesey in Cambridgeshire knocked her back on the edge of a table at work in 1994, she could hardly imagine what trauma and distress lay ahead for her over the following 13 years.

From that trivial, everyday bump to the skin, Trudy developed a chronic pain disorder medically called Reflex Sympathetic Dystrophy (RSD).

It could happen to anyone but in Trudy's case it wasn't diagnosed early enough.

She was passed from doctor to doctor, many of whom had no idea how to treat her.

Some even suggested it was all in her mind.

From bad to worse

"From a simple knock her conditioned worsened to affect her entire nervous system,"' says Chris Chandler, one of the UK's top neuro-surgeons who treats Trudy.

"RSD eats away at your nerves.

"It creates pain of a type that is unremitting, unrelenting - day in, day out - and you don't die.

"I could not imagine anything worse for a human being to suffer from."

Trudy and carer
Trudy and her carer cope with the pain barrier

Yet things went from bad to worse.

Trudy's foot became infected and it swelled up alarmingly.

She had caught elephantiasis, a disease which is almost unknown in Britain.

Her limb ballooned in size and resembled an elephant's leg.

Within two years Trudy Lapinskis had become totally dependent on friends and family for help.

Amputation

Dr Joan Hester, of King's College Hospital in London, advised Trudy not to have her leg amputated because the resultant phantom pain would be worse for her.

"We discourage amputations for cosmetic reasons in cases like this, but unfortunately Trudy got a secondary infection so we had no option," comments Dr Hester.

Trudy playing snooker
Trudy is determined to live life to the full

So in 2002 Trudy had to have her leg amputated.

"It was either me or the leg," adds Trudy, wryly.

"I do seem to be an unlucky person.

"People pass me by on the other side of the road!" says Trudy, in her characteristically self-deprecating way.

She offers advice and help similar suffers some of whom are unable to cope with the pain and are contemplating suicide.

"It doesn't actually kill people apart from those who can't live with the pain and commit suicide."

"I sometimes feel I got this illness so I can help others who can't cope with it.

"Nothing's worth taking your life for."

RSD triggers

So what is the trigger for Reflex Sympathetic Dystrophy - and why are some people more prone to it?

Trudy as young woman
Trudy - a bright future before RSD struck

Neuro-surgeon Chris Chandler says that the condition remains a mystery:

"It can occur from a simple knock of an elbow or a bone.

"Sometimes people get a broken bone, but they're left with chronic, relentless pain which starts to affect more than just the limb.

"It affects the rest of their body and nobody knows why - it's one of the mysteries of medicine."

Little chance of a cure

RSD fact file

RSD develops when the part of the sympathetic nervous system that controls blood flow and sweat glands in the hand and arm is disturbed and behaves abnormally.

Symptoms include swelling, stiffness, temperature and skin colour changes, muscle spasms and burning pain.

Can be triggered by an injury, infection or pressure on a nerve, heart attack, or stroke. Women are more likely to develop RSD

There are three main stages:

* initial acute stage - burning sensation.

* the dystrophic stage - swollen limbs, pain and stiffness.

* The atrophic stage - muscles may waste away and the skin becomes stretched.

The condition can be treated if identified early. Occupational therapy can help - and surgery in more extreme cases.

Source: BBC Health/RSD UK

There is little chance of a cure for Trudy.

Instead she relies on a pain management device inserted in her back.

Because of the high level of relief she needs to be generated from this nerve stimulator to mask the pain, she gets through a lot of batteries.

In December 2006, we filmed Trudy while she been waiting seven months to have the latest expired battery replaced.

She's not seen as a high priority patient because her condition is not life threatening, and has to wait for a bed to become vacant.

Eventually Trudy gets the call from the hospital to say the surgeon can fit her in.

Relief is a matter of hours away.

"The pain is as bad as it can get without the stimulator working. I really need that battery changing. It will improve my quality of life no end," says Trudy.

The operation goes well and just two weeks later the improvement is palpable:

"'If I was a horse, they would have shot me by now.

"So it's my mission to make sure something good comes out of this and make doctors aware of the condition early enough to prevent what happened to me ever occurring again."

Advice and support

If you have RSD or are affected by any of the issues on this programme, please contact Trudy via her website - RDS Help or email her at trudy@rsdhelp.fsnet.co.uk

Further help is provided by the RSD UK group.

RSD UK produces a patient information booklet available by emailing your full address and details to barry@rsd-crps.co.uk

Join the RSD UK Online Forums to share issues with fellow patients.

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