As a 22-year-old, Tara Chalmers wants to be an independent young woman.
But she is living with a little-known condition which leaves her in constant severe pain.
There is no cure for Complex Regional Pain Syndrome (CRPS) but Tara has undergone a procedure which it was hoped would help – unfortunately her symptoms have worsened.
Now, she is speaking out in advance of a global awareness day on November 7, which takes place during CRPS Awareness Month.
Tara, from Beeston, Leeds, said: “We need much more awareness and understanding – there are many people in the world that suffer from this but there are also people who don’t even know this exists and it can change your life in a split second. All it takes to trigger it is a fall or a sprain.
“I am unable to work anymore and I’m unable to be an independent young person like I was before CRPS. I can not leave my house without a carer with me due to severe anxiety.”
She first started suffering symptoms in April 2012 when she thought she’d sprained her foot. Over the next few months, she had treatment but nothing helped.
Eventually she was referred to a pain management specialist who found she had nerve damage, and then diagnosed CRPS.
“It was daunting because I’d never heard of it before,” she said.
She said that the condition “feels like the body has been set on fire inside”.
It often develops after an injury, although Tara doesn’t know what caused it for her, and the temperature of affected limbs can fluctuate from red, with a burning pain, to blue and feel freezing cold.
“It affects my left foot, leg, back, left shoulder blade, left collar bone, left arm and hand,” said Tara.
“I’ve recently been diagnosed with a heart condition. I also now am waiting for a full diagnosis of CRPS in my bladder.”
Initially Tara went into remission, but then it flared up and last year she underwent surgery to implant a Spinal Cord Stimulator.
However since the procedure, Tara’s symptoms have spread and she can no longer work as a supply teaching assistant.
“I had my hopes set up of it working – when it failed, they came crashing down,” she said.
She is now waiting for a further procedure, but is currently in constant pain and uses a wheelchair when out of her house.
“I feel like a burden – I can’t do anything to help my mum,” she said.
Tara said she wanted to raise awareness, especially among doctors as she frequently had to explain the condition to them.
“I should not have to do that – they should read notes and read up on it.”
* Complex Regional Pain Syndrome is often triggered by an injury, which it is thought that the body reacts abnormally to.
This results in severe, debilitating pain which can affect one limb or other parts of the body. The UK charity Burning Nights supports sufferers and the global Colour The World Orange awareness day takes place on November 7.
A fundraising event organised by 16 year-old sufferer Laken Wilkinson’s takes place on Friday at Pudsey Liberal Club from 7pm.
For more: Visit www.burningnightscrps.org