Burton mum living with constant pain so severe it's 'like having a limb amputated'

A Burton mum has told how a debilitating condition means she is living in constant pain which is so severe it has been rated as worse that having a limb amputated.

Mum Clair Hicklin was 42 when she was diagnosed with chronic regional pain syndrome (CRPS), which she has had for the past four years.

The pain she suffers daily is the highest on the McGill scale, which doctors use to measure the intensity of patients' discomfort. That means it is rated more painful than childbirth or amputation.

The cause of the condition is currently unknown, but doctors believe it is associated with damage to the central nervous system, which can often be caused by an injury. Clair's just came on one day at work when she cricked her neck when she turned sharply.

She did have a spinal cord stimulator fitted in her back at the beginning of last year to limit the pain. It initially helped but during the past year it has become gradually less effective and now she is back to living in excruciating pain.

And having given birth to three children of her own, the Bosworth Drive mum, now aged 46, says the McGill pain scale is not wrong.

Most cases of CRPS are triggered by an injury, but the resulting pain is much more severe and long-lasting than normal.

Many cases gradually improve. However, some cases never go away and people suffer pain for many years.

Clair said: "It's called the 'suicide disease' because so many people that have it can't deal with it and take their own lives.

"There have been times when I have wanted to. I was at the point when I could have thrown myself out of a window because I was in so much pain.

"The only thing that stopped me was thinking about my family. My children need their mum."

The NHS says that, in some cases, the condition can lead to suicidal thoughts because of the pain sufferers feel or as a side effect of treatments, such as anti-convuslants or antidepressants.

Clair is now calling on people to join campaigners in wearing orange to raise awareness of CPRS.

Medics initially told her she had dislocated her neck.

But after months of subsequent hospital and doctor's appointments, Clair was diagnosed with CPRS.

The 46-year-old said: "I was at work and I cricked my neck, but it was so painful. I felt like I had a broken neck.

"The pain went down my left arm and I was in agony. I went home, and later went to hospital.

"I was screaming at the doctors not to touch me because every time they did, it would make the pain so much worse.

"Nobody could understand why I was in so much pain."

Cricking her neck led to pain in Clair's left arm; now it has also spread to her foot.

Clair struggles so much it makes it difficult for the former Darley Limited employee to work at the packaging and supply firm in Wellington Road, Burton.

As the spinal cord stimulator is no longer working, Clair is now searching for alternatives, along with her doctor, including looking for things that could help that are used in other countries.

Her son William has taken an active role in caring for his mum, despite being only 11 years old.

Before William, a de Ferrers pupil in Burton, goes to school every morning, he checks his mum is feeling well and helps her up out of bed. Clair's other children are Millie, 20, and Chris, 22, and have both helped to support their mum in the past.

However, being cared for by her youngest son has taken its toll on Clair.

She said: "I feel guilty. I should be doing that sort of stuff for him, not the other way around.

"I should be making his dinner to take to school and walking with him to school, but I can't.

"There are days he doesn't want to go to school or leave my side because he's worried that I might not be here when he gets back. It's heartbreaking."

Clair's husband, Mark, 47, has also taken a major role in her care, but as he has to work, he cannot be with her all day every day.

Daughter, Millie is studying marine vertibrate zoology at Bangor University and has been working to raise awareness about her mum's condition among fellow-students.

November was CRPS Awareness Month and Millie took to raising awareness at her university campus.

She wrote an article in the student newspaper, as well as organising events at the Students' Union to teach more people about the condition.

She said: "It's not a very well known condition; we didn't know about it until Mum was diagnosed.

"It's horrible to see my mum in so much pain and just wanting it to be over.

"We all try to help her the best way we can, but there is only so much that we can do.

"We've been looking at alternatives for therapy in the United States, as it is recognised by more people over there than it is here."

Burning Nights, a charity set up to support people living with CRPS, was established in 2014.

Founder, Victoria Abbott-Fleming was diagnosed with the condition in 2003 and wanted to set up an organisation to offer support for other sufferers.

The organisation says the main characteristics of the condition include an extreme constant burning pain and extreme colour and temperature changes.

What is complex regional pain syndrome?

Complex regional pain syndrome (CRPS) is a poorly-understood condition whose sufferers can experience persistent, severe and debilitating pain.

Although most cases of CRPS are triggered by an injury, the resulting pain is much more severe and long-lasting than normal.

The pain is usually confined to one limb, but it can sometimes spread to other parts of the body.

The skin of the affected body part can become so sensitive that just a slight touch, bump or even a change in temperature can provoke intense pain.

Affected areas can also become swollen or stiff and undergo fluctuating changes in colour or temperature.

Many cases of CRPS gradually improve to some degree over time, but there is always some degree of pain.

However, some cases never go away and the affected person will experience pain for many years.

The cause of the condition is unknown, but it is generally thought to be caused by the body reacting abnormally to an injury.

It used to be thought that CRPS was a psychosomatic condition, meaning symptoms were "all in the mind", but research has disproved this.

It is difficult to estimate exactly how common the condition is, as many cases may go undiagnosed or misdiagnosed.

A study claimed that up to one in 3,800 people in the UK develop CRPS each year.

It can begin at any age but the average age for symptoms to start is around 50. Women make up around three out of four cases.