Mum’s goal to help others with her story of chronic pain

A Coast mother whose breath is taken away by daily gruelling pain hopes her story can make other sufferers of the incurable condition feel “less alone”.

Since 2015, Christine has been living with a rare and debilitating chronic pain disorder called Complex Regional Pain Syndrome (CRPS). Photo: Patrick Woods

A Coast mother whose breath is taken away by gruelling pain hopes her story can make other sufferers of the rare, incurable condition feel "less alone".

Christine Clegg was in 2015 diagnosed with Complex Regional Pain Syndrome a debilitating, painful condition in a limb, associated with sensory, motor, autonomic, skin and bone abnormalities.

Six months after sustaining a stress fracture in her left foot while "casually running" Mrs Clegg underwent surgery to fix the unhealed injury.

Having never had an operation, she assumed the excruciating pain she was experiencing after the surgery was a normal side effect, but it kept "building and building" until her surgeon identified the condition and referred her to a pain management team.

Christine Clegg's CRPS spread from her foot up her left leg and causes extreme swelling, redness and dry, cracked skin.

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The Buderim resident's CRPS spread from her foot, up her left leg and causes extreme swelling, redness and dry, cracked skin.

"It's the worst pain that I've ever dealt with," she said.

"At its worst it's an intense burning pain, for me it was a cramp that just wouldn't stopped, and it felt like my foot was being pulled closer and closer to fire

"I had had never felt anything like it … I would go home and just cry."

Unlike many suffers Mrs Clegg said she was lucky enough to be diagnosed quickly and was referred to pain specialist Dr Peter Georgius, who she says has managed her pain incredibly.

Mrs Clegg, has undergone numerous treatments including steroid injections and nerve blocks, but she said a spinal cord stimulator, implanted in 2019 has made a world of difference.

"The spinal cord stimulator has just been the best thing because it relieves 60 per cent to 70 per cent of the pain," she said.

"I hate what it's (CRPS) done and how it has affected us, but at the same time I have to be very grateful because there are some people that try so many different treatments and nothing works for them.

Since 2015, Christine has been living with a rare and debilitating chronic pain disorder called Complex Regional Pain Syndrome (CRPS). Phot:o Patrick Woods

Describing her daily pain as a three out of 10, Ms Clegg said she would never be pain free.

"I've learnt to deal with more pain than I've ever had to, and I hate that," she said.

"I just manage and get through the day, it's my new normal."

The former teacher was forced to stop working in 2017 and endures daily challenges.

"For my children it was tricky it was there last couple of years of school and I've wasn't in a great place,' she said.

"I couldn't do a lot of things, I couldn't go out a lot, I can't travel for a very long time in a car without having to stop, I had surgery on my toe nail to remove it because it just kept getting infected and my foot can be extremely sensitive.

"I try and shower without the water touching my foot too much because it feels like shards of ice hitting your foot or if the water is hot it can feel like blades."

Mrs Clegg said sufferers of CRPS experienced different symptoms, but she hoped sharing her story during CRPS awareness month (November) would help others.

"There is a lot of misinformation even in the medical community about CRPS and … I don't want people to feel sorry for me or say she is brave it's just so people know this is a real thing and it affects people," she said.

"While it has not been my experience, some people struggle with their family or friends not understanding and saying, 'you should be right by now' or 'you need to exercise more and change your diet'.

"So, if we are talking about it and people are becoming more aware of it lessens the stigma that chronic pain can sometimes have - if it is real or imagined - and help suffers feel less alone."

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