Renee Harvey and her 11 year old son Neko. Photo: Supplied
A Nelson woman living with chronic pain brought on by years of physical tics from Tourette Syndrome is desperate for treatment that will to allow her to live a normal life.
Renee Harvey has had Tourette's since she was 10 years old.
Her first memory of back pain was when she was fifteen or so, brought on by a physical tic that caused her to jump into the air and crouch down on the ground, often repeating the motion every few minutes.
Her tics have changed shape over the years, but the toll they have taken on her body is clear.
The pain has become so severe that the 29-year-old mum is unable to walk to the end of the block, cook a meal for her family or stand up for long enough to wash the dishes.
She wants to have a career and not have to rely on a benefit. More than anything she would love to walk on the beach with her her eleven-year-old son Neko or take him to play mini golf.
"I feel let down and like I'm just not worth helping because I've got this condition. I just feel very stuck and alone."
She has been told surgery is not an option and is prescribed morphine for the pain, but the constant pain is affecting her mental health and making her depressed.
"It gets me so down I just want to isolate myself from everyone and everything because I have no energy or time for it.
"I get really angry and stressed out, I'm very emotional, can't be f***ed with anything or anyone and it makes parenting hard."
An MRI scan last March showed she has spinal disc disease, damaged spinal nerves and a tear in the outer layer of certain vertebrae.
The pain had spread from her back, down her leg. On her worst days, she couldn't lie down, sit or stand without being in pain.
An appointment with an orthopedic surgeon in April left her bereft after she was told there was no surgery that would help to ease her back pain, though that could change in the future.
The specialist suggested getting a dog she could take for walks, but she was unable to make it around the block.
Harvey was told the tics from her Tourette's would make healing difficult and increase her risk of infection so she believed the surgeon was reluctant to take on a high-risk patient.
But she knew there were options that could improve her quality of life and she was desperate to access treatment that could help.
"I deserve that chance, I know I deserve better than this."
Having to fight for healthcare was something Harvey was familiar with. She had had to push to access different treatments in a bid to reduce the effects of her tics, some more successful than others.
In 2018, she underwent deep brain stimulation surgery which gave her some reprieve, but the chronic, debilitating pain was now preventing her from living the life she wanted to.
"It's either my pain or my tics and they both feed off each other at the moment."
Lack of support for those living with Tourette Syndrome
Tourette's Association general manager Hayley Seath said it was "no surprise" those who experienced physical tics over long periods of time went on to develop chronic pain as a result of repeated movements and hyperextending joints.
She said there wasn't great support for people with Tourette's who ended up in a situation like Harvey's.
"A lot of medical professionals just don't recognise Tourette Syndrome and don't believe in the disorder at all, which makes it really, really hard to access therapies when you come up against medical professionals who just dismiss it."
"Life is hard enough with tics, let alone chronic pain."
Some doctors were reluctant to operate on people with Tourette Syndrome as their tics could negatively impact their recovery, or make it worse, Seath said.
"We don't have any medications specifically for Tourette Syndrome that can help to relieve the tics, which might give a bit of healing time. It's just a really nasty cycle and unfortunately living with chronic pain is just not an option, either."
What are the options for those living with chronic pain?
Australasian Faculty of Pain Medicine dean Dr Kieran Davis previously told RNZ "a day in pain clinic is a day of listening to stories of people's lives falling apart".
Faculty spokesman Dr Duncan Wood said Harvey's case reflected the reality of life for those living with chronic pain.
It was a complex and wide ranging condition, defined as pain lasting for more than three months, that some received adequate treatment for, but others did not have access to.
Figures show one in five New Zealand adults, around 770,000, live with chronic pain, with back pain the most common cause.
There was inequity in access to treatment across the regions, among Māori and Pasifika, for women, older people and those with disabilities.
Wood said multidisciplinary pain management services focused on trying to give people the knowledge and skills to lead a rich and fulfilling life despite what they were experiencing.
"Often pain relief has a very limited lifespan for effectiveness and carries with a side effects that can be worse than the benefit that comes with it."
The service involved comprehensive assessment with a specialist pain medicine physician, psychologist and occupational therapist, followed up by an appointment with a physiotherapist.
But access to such treatment was variable across the country and Wood said the district health board model of care did not mandate the treatment of chronic pain.
The faculty had been working alongside the Ministry of Health to develop an evidence-based national model of care for pain medicine, Wood said.
"What we hope for the future is to get better links between those smaller services and the larger clinics, for more sharing of skills to improve access for people - particularly in small regions - to a better quality service."
"The goal is to provide access to quality pain management for all New Zealanders no matter who they are or where they live."
The model of care is expected to be published this month.