AS a child, Georgia Lambert just remembers being in pain.
She had severe asthma and when she got older her 'bendy bones' would dislocate.
Soon the pins and needles started, but Georgia, who is from West Sussex, was told there was nothing wrong with her.
Now 28, she says very few medics believed there was anything sinister going on with her health.
But her parents advocated for her and eventually, Georgia was told the back of the brain was sagging out of her skull and that she had 'what looked like fluid-filled cysts in her spinal cord'.
She was diagnosed with Arnold-Chiari malformation and syringomyelia.
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Both conditions are usually diagnosed at birth and when detected, can be monitored appropriately by health care professionals.
It's nearly ten years on since she had emergency, brain, spine and neck surgery and Georgia said she is finally coming to terms with her body and her life.
Speaking to The Sun, Georgia, who is now a journalist at The Times in London, said she had been in pain for as long as she remembers.
She said: "I was in and out of hospital as a kid, but I eventually grew out of that, only to develop other issues.
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"I knew the pain wasn't normal and no one would really understand what I was going to.
"Quite often people wouldn't believe me and it was a real struggle."
Georgia explained that she had been really body conscious at school and and at one point, she developed lesions on her legs that wouldn't heal.
"I traipsed around London looking for makeup that would cover it up and nothing seemed to work," she said.
She also had severe hypermobility and recalls dislocating her shoulder at school several times.
"I'd constantly be sat in the first aid room at school waiting for my mum to collect me so she could take me to hospital.
"While pain wasn't knew to me, I couldn't get used to it."
Over the years, she said she had sampled a range of treatments, many privately, and said her and her family were exploited.
"These people could see how desperate I was, they could see my parents just wanted to help their child and they took advantaged of it."
Writing in her piece for The Times she said that this involved diets that promised to help her stop the vomiting that was associated with her condition.
Many people said she was 'too young to be in pain', and by the age of 17, she said she had developed shooting pains at the side of her face.
Medics even told her parents that she was just a 'stressed young woman' and she was discharged into children and young people's mental health services.
Luckily, her counsellor recognised that her stress had a physical cause and told her mum to demand a scan.
"I was a shell of a human being and my parents really had to push forward for a diagnosis for me," she said.
"I couldn't stay awake, I'd sleep for nine hours during the day and I really thought I was losing my mind – I didn't think that it meant I'd actually be physically losing part of it."
Georgia said: "After waiting weeks for the results, my GP paused for breath before trying to pronounce the two conditions.
"He then explained that the back of my brain was sagging outside of the skull, which had caused what looked like fluid-filled cysts to form in my spinal cord."
Three weeks after her 18th birthday she had surgery.
"It sounds strange but I was thrilled. I cried, I was so happy that I wasn't going mad."
What is Chiari malformation?
A Chiari malformation, previously called an Arnold-Chiari malformation, is where the lower part of the brain pushes down into the spinal canal.
There are four main types, but type 1, called Chiari I, is the most common. In someone with Chiari I, the lowest part of the back of the brain extends into the spinal canal. This can put pressure on the brainstem, spinal cord, and obstruct the flow of fluid.
The exact cause of Chiari I malformations is unknown. It tends to be present from birth, but is normally only found in adulthood when symptoms develop or when an MRI scan is done.
Many cases are thought to be the result of part of the skull not being large enough for the brain.
Many people with a Chiari I malformation will not have any symptoms, but if they do they can include:
- headaches – these are usually felt at the back of the head and may be brought on or made worse by coughing, straining, sneezing or bending over
- neck pain
- dizziness and balance problems
- muscle weakness
- numbness or tingling in the arms or legs
- blurred vision, double vision and sensitivity to light
- swallowing problems
- hearing loss and tinnitus
- feeling and being sick
- difficulty sleeping
Treatment depends on the symptoms and how severe they are. Painkillers can relieve any headaches and neck pain but if they are severe, surgery may be offered to relieve the pressure on the brain.
She explained: "My spinal cord was then drained. I can’t say enough good things about my second surgeon. He took me seriously and has continued to do so, all these years later.
After surgery, Georgia wanted to get back to her old life, but admits she hadn't realised how much of a toll this would take on her body.
She had started university but the chronic pain was still dominating her life.
In order to tackle nerve damage, she was prescribed steroid injections after one medic said her pain was muscular.
But her pain continued and Georgia said she struggled to relate to the pain scale that doctors would provide her with.
In February 2016, she dropped out of university and sought support from the Ann Conroy Trust.
It was through the organisation that she was able to use mindfulness to 'distract herself from seizing'.
"I still have to manage a whole host of problems such as severe tremors in my hands, bone spurs on my spine and a recurring brain sag, but I can walk again."
On good days, she said she can go for a walk, but on others, she said there are days she struggles to make a cup of tea.
Georgia said she is now 'determined' to fight to see chronic pain viewed as a valid disability in the hope of helping others, and ultimately, changing the language around pain.
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