A SCHOOLGIRL has spent the last two years in agony after contracting a skin infection from a hot tub.
The pain is so bad that Poppy Burns, 12, is only able to attend school part-time and is often forced to use a wheelchair.
After two years of doctors saying there was "nothing wrong with her," she was diagnosed with complex regional pain syndrome (CRPS).
The condition, often dubbed the world’s ‘most painful condition’ causes patients to suffer “persistent severe and debilitating pain”, according to the NHS.
Mum Georgina Burns, 47, said her daughter's ordeal has put a huge strain on their lives.
She said: "Since the beginning of September, she has done four full days of school.
"We often find she will go to school, cope for a while, and then it all gets too much and she ends up in hospital.
"The worst part is watching her cry in pain asking for help – and I know there is nothing I can give her."
The photographer, from Cardiff, Wales, is now calling for greater research into CRPS.
Poppy was aged 10 when she got skin infections in her toe after spending time in a hot tub.
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She was given antibiotics but, after an incident while playing football, she was back to square one and in agony.
Poppy was taken to hospital in Easter 2021, where Georgina claims she was told there was nothing wrong with her daughter.
She said: "It is difficult to get diagnosed.
"For a while, she was just in extreme pain more than what was necessary for whatever injury she had.
"She was screaming and the doctors were saying there was nothing wrong with her."
Eventually, Poppy was referred to a consultant who said the little girl had "textbook" CRPS symptoms.
Around 16,000 Brits are thought to have the condition, which is usually triggered by an injury – but the resulting pain is much more intense and long-lasting than normal.
It's sometimes called the “suicide disease” because it can leave patients in so much distress they say they would rather die than continue living with the pain.
Usually, it only affects one limb and the skin of the affected body part can become so sensitive that a slight touch, bump, or change in temperature causes agony.
After the diagnosis, Georgina soon realized that Poppy's condition could be managed and not cured.
The pain, which moves around her body is "extreme," the mum said.
"She describes it as little people in her foot that are stabbing her," the mum said.
Poppy also suffers from very sensitive skin, meaning nothing can touch her without it being painful.
"When it spread to her feet she couldn't put her feet down.
"She would be crawling around on her knees or if we went out she would be in a wheelchair."
Poppy's wrists would also lock in a 90-degree position so she can't move them.
When this happened, her parents would rush her to A&E where doctors would give her gas and air and "pull her wrists back up," Georgina explained.
In September 2023, Poppy and her mum flew over to Italy for Scrambler Therapy – which is not available in the UK.
It involves the use of electronic stimulation on the skin with the goal of overwhelming pain information with non-pain information.
Georgina said: "By the end of the two-week visit she was in zero pain and her skin was completely cleared up.
"She was on cloud nine, like a different person, she was so happy.
"Around a week of being back, the pain came back massively, however, her joints haven't locked since and her sensitive skin hasn't returned."
November is CRPS awareness month and Georgina is calling for more research and more awareness.
She hopes a cure can be found and people like Poppy don't have to experience a life of pain.
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Georgina said: "The more people that know about it the more chance there is of more research being done and someone coming up with medication that can help.
"Unfortunately at the minute, there is very little medication for it."
What are the symptoms of Complex Regional Pain Syndrome (CRPS)?
The pain of CRPS is usually triggered by an injury.
But the pain is a lot more severe and long-lasting than would normally be expected.
The pain may feel like a mix of burning, stabbing or stinging. There may also be tingling and numbness.
In addition to chronic pain, CRPS can also cause a range of other symptoms.
These can include:
- strange sensations in the affected limb – it may feel as if it does not belong to the rest of your body, or it may feel bigger or smaller than the opposite unaffected limb
- alternating changes to your skin – sometimes your skin in the affected limb may be hot, red and dry, whereas other times it may be cold, blue and sweaty – changes to skin colour may be harder to see on brown and black skin
- hair and nail changes – your hair and nails in the affected limb may grow unusually slowly or quickly and your nails may become brittle or grooved
- joint stiffness and swelling in the affected limb (oedema)
- tremors and muscle spasms (dystonia)
- difficulty moving the affected body part
- difficulty sleeping (insomnia)
- small patches of fragile bones (osteoporosis) in the affected limb – although there's no evidence this could lead to fractures
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