A little girl has been left in constant agony for two years after she used a hot tub.

Poppy Flambert, 12, lives in severe pain every day - with the pain so chronic that at times she has to use a wheelchair and she can only attend school part-time. Her mum Georgina Flambert said that - after she developed a skin infection on her toe from using a hot tub - the youngster was prescribed antibiotics.

Speaking to Wales Online, Georgina said: "It started to get a bit better and she wacked her toe with a really hard ball and that really hurt, but it did no damage. And from there it didn’t get better. It got more and more painful, we didn’t understand why she was screaming in pain. She could not put her foot down. The doctors did not know what was wrong."

After a while, Poppy was sent to the hospital for further tests, but doctors there could not explain what was causing this extreme pain until a consultant suggested it could be complex regional pain syndrome (CRPS).

According to the NHS, CRPS is a poorly-understood condition where a person experiences persistent severe and debilitating pain. Most cases are triggered by an injury and the pain usually only affects one limb but it can spread to other parts of the body. The skin of the area affected can also become sensitive to touch. It can improve over time, but for some people with CRPS, they can experience the pain for many years.

CRPS is the body's way of reacting abnormally to an injury - and Georgina said that the way it has been explained to her is related to how the brain sends signals to your body when it is hurt. With CRPS, your brain is constantly sending those pain signals, so despite their being no physical injury, your brain thinks it is in pain.

For Poppy, the pain started off in one foot, then spread to the other. This meant she had to use a wheelchair as she couldn't put her feet on the floor because of the amount of pain that it caused. She has missed a lot of school in the last two years and currently attends on a part-time basis.

Georgina said a lot has happened since that diagnosis in Easter 2021 when Poppy was just 10. She said: "Sometimes the redness would get really bad then look ok. It gets very cold to touch. Even to go outside, if a drizzle of rain touches her foot, she screams in pain.

"After a few months it spread into her other foot. She was in a wheel chair for four to five months. She could not put her foot down at all. That was really hard. That pain started in the morning then by the evening she could not walk. She could not let anything touch her."

Poppy has also experienced skin lesions (this is called allodynia) with the condition which often appear after she bumps a section of her body. Georgina explained they appear like friction burns and blisters. She also experiences a lot of joint locking, and has had to wear braces and splints to keep her feet and ankles in place.

Georgina said: "It's so intense that even a feather touching her is like a knife stabbing her. She described drizzle on her foot as like having sharp pins dropped on her foot.

"Her pain has been so extreme at times that she has said that she would rather have her foot cut off. It is so hard to see her in so much pain and knowing that there is nothing we can do to help her as even pain medication doesn't help her. Hopefully in the long term, with the help of psychology and physio etc she may potentially be able to achieve remission, but it may be a case of simply learning to be able to live with the pain.

"She managed to get back to walking through sheer determination and a big goal - we were going on holiday with her cousins and she was determined to be able to join in and not be in the wheelchair the whole time, so she really pushed herself in physio and spent a long time trying to tolerate things touching her skin and managed to walk to a point (sometimes with the use of crutches) for the holiday.

"After this, at Easter 2022 she spent four days in the Bath centre for pain services, having intense psychology and physio and they helped us to get her into remission (with just very low background pain) after a couple of months. Unfortunately this didn't last and around three months later she hit her hand and it locked in a very bent position and it all started again. She says to me that it's hard 'having to pretend to be okay all of the time when I want to scream'."

The only sort of relief that she has experienced is with an IV paracetamol, and a treatment called Scrambler treatment, that the family from Cardiff flew to Italy to access.

Scrambler therapy uses electrodes to send signals to the part of the body experiencing pain. It urges the brain to perceive the signals as normal non-pain. For Poppy, the treatment was life-changing, but it was temporary.

Georgina said: "She was all lit up and happy, we were like this is brilliant, when we came back home after about a week or so then the pain started to come back. However it did do something, her ankle was all locked and that is fixed back to normal now. She was wearing a brace and that is moving again now."

Unfortunately, there is no-one in the UK who offers that therapy. Poppy's current treatment path focuses on psychology and physio, teaching her to manage the pain rather than cure it, as there is no cure for the condition.

Georgina and Poppy want to share their experience with CRPS in order to raise awareness of the condition, which they insist is more common than people think.

Georgina added: "There needs to be a lot more research into it and the treatments. It would be amazing if someone in the UK were to offer Scrambler treatment. You can grow out of it, and we really hope Poppy will, but so far that is the only success we have had with managing it."

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