A life in agony: 27-year-old's daily torture battling constant pain

Kelly-Marie Pearce, 27, of Lowestoft, who has had reflex sympathetic dystrophy for the last 14 years

Kelly-Marie Pearce, 27, of Lowestoft, who has had reflex sympathetic dystrophy for the last 14 years and is hoping to raise awareness about the condition and the constant pain she lives with. - Credit: DENISE BRADLEY

A woman who has lived with a rare condition which causes her constant pain for more than half of her life has spoken out to raise awareness of its terrible impact.

Kelly-Marie Pearce was just 13 when she collapsed at school with a dangerously low heartbeat and was rushed to hospital.

The then-Kirkley High School pupil had a pacemaker fitted the following week, but claims a mistake in the hours following the operation has led to lifetime of pain as a result of reflex sympathetic dystrophy (RSD).

Kelly-Marie Pearce, 27, of Lowestoft, who has had reflex sympathetic dystrophy for the last 14 years

Kelly-Marie Pearce, 27, of Lowestoft, who has had reflex sympathetic dystrophy for the last 14 years and is hoping to raise awareness about the condition and the constant pain she lives with. - Credit: DENISE BRADLEY

Now 27, Miss Pearce, who had suffered a complete heart block in the collapse, said: "This has changed my life completely.

"I went from being 13 and playing football every day to not being able to move because of the pain.

"There were so many things I wanted to do that I have been restricted with. I can't live a normal life.

"If my heart had been a couple of beats slower after I collapsed I would've died."

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Miss Pearce spent eight days in a Norfolk hospital before being transferred to a hospital out of East Anglia, where they fitted a pacemaker.

She said: "My dressing strips were taken off within 24 hours, which you're not meant to do, and the wound opened up again. 

"They closed the wound again, but it had moved my pacemaker and it stopped the nerves ever healing."

Kelly-Marie Pearce, 27, of Lowestoft, who has had reflex sympathetic dystrophy for the last 14 years

Kelly-Marie Pearce, 27, of Lowestoft, who has had reflex sympathetic dystrophy for the last 14 years and is hoping to raise awareness about the condition and the constant pain she lives with. - Credit: DENISE BRADLEY

Three years after having her pacemaker fitted, Miss Pearce returned to the hospital after suffering pain in her left arm, with an ultrasound unable to find the pacemaker in the usual place.

She said: "No one believed me when I told them it had moved.

"They said it wasn't possible, but when I went for the ultrasound they couldn't find it and I told them exactly where to look because I could feel it inside me.

"They started giving me nerve tests and shocking my arm and that's when they diagnosed the RSD."

The condition can have a severe effect on mental health, she said.

She said: "Not a lot of people are aware of it.

Kelly-Marie Pearce, 27, of Lowestoft, who has had reflex sympathetic dystrophy for the last 14 years

Kelly-Marie Pearce, 27, of Lowestoft, who has had reflex sympathetic dystrophy for the last 14 years and is hoping to raise awareness about the condition and the constant pain she lives with. - Credit: DENISE BRADLEY

"I have to try and carry on with life but it gets worse and worse each day.

"I have been in mental health hospitals because I couldn't cope with the pain.

"On top of it all I also came out as gay, so I was going through the start of my pain and realising I was a lesbian, and trying to go to school was a lot mentally.

"It was all a big change and I started putting on weight because I was still eating as if I was playing football every day."

The condition is one form of complex regional pain syndrome (CRPS), which has no cure and little management options.

Many with the condition, which is often caused by injuries or surgeries, describe the pain as aching or burning.

Kelly-Marie Pearce, 27, of Lowestoft, who has had reflex sympathetic dystrophy for the last 14 years

Kelly-Marie Pearce, 27, of Lowestoft, who has had reflex sympathetic dystrophy for the last 14 years and is hoping to raise awareness about the condition and the constant pain she lives with. - Credit: DENISE BRADLEY

It has left Miss Pearce unable to work, despite her ambition of becoming a heart surgeon, but she hopes to help others with the condition by sharing her story.

She said: "There isn't really a way to manage it, I just need to try and distract myself from the pain.

"I can't get hired because it is so random when I'm in pain. I can be walking fine one minute and in agony the next.

"Sometimes it goes from one to 100 in seconds, other times it happens gradually.

"All I want to do is be able to help people.

"I want people to know what it is. I have found myself having to explain it to doctors and GPs who have never heard of it before."

If you need help and support, call Norfolk and Suffolk Foundation Trust’s First Response helpline 0808 196 3494 or the Samaritans on 116 123.

Both services are available 24 hours 7 days a week. You can also download the Stay Alive app on Apple & Android.

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