Imagine feeling like there is boiling gasoline in your blood, burning you from the inside. That’s the way a Nelson woman describes the pain of the condition she lives with. Sara Hollyman reports.
Sarah Allsopp was just a teenager when she suffered a minor injury that would lead to a debilitating illness that will affect her for the rest of her life.
Years after her initial injury, that started simply as severe swelling, Sarah was finally diagnosed with Complex Regional Pain Syndrome (CRPS) – a rare but chronic pain condition that affects every aspect of her life.
It has been dubbed the “suicide disease” by many, as those who suffer from it have been known to take their own life in an attempt to find relief from the pain.
“I’ve learnt what my triggers are. For me it’s noise, so I try and protect myself from that, but for others it can be something like the pressure changes from weather.”
She describes the disease as a malfunction of the nervous system which sends the wrong messages from your brain telling a part of your body it’s in extreme pain.
“There’s a connection issue in the network, so your brain is getting all these messages which you don’t understand.
“Your brain can see that visually there’s nothing wrong but yet you actually want to chop the limb off because it is so painful and debilitating,” she says.
She says it took 13 years to find a support group that allowed her to begin to understand CRPS.
“You start to feel like you’re going crazy because normal stimuli of touch, sound and vibration actually become harmful to you. So you start protecting yourself from these things, not understanding why.”
Sarah says she has struggled to find a doctor who understands the condition, a battle that is echoed by many who suffer from CRPS.
“You’re basically told that the wires in your brain are wrong, there’s nothing you can do, learn to live with it. But when your body feels like gasoline is being injected into you and it’s so bad you actually want to cut that limb off … there’s no escape from it.”
She says the illness, which has no cure, and is still not widely understood, has affected every aspect of her life.
“Due to my noise affliction I can’t sleep with my partner, we sleep in separate bedrooms.There’s no way I’d be able to have children, because I can’t look after myself, so how could I look after someone else?
“It’s affected my friendships; I basically feel like I don’t have any friendships left.
“The way you eat, the way you breath, the nausea.”
She says she can’t get more than two hours sleep at night.
“You can’t function enough to work because your brain is always distracted because you’re always in pain.”
November is CRPS Awareness Month with Paint the World Orange Day held on the first Monday in November.
CRPS is considered a rare disease, but Sarah says there are more than 300 people in the New Zealand support group.
She understands there are more than 20 people in the Nelson Tasman region who suffer, and she wants to see a local support group set up to connect them.
“Every aspect of your life is different, it’s not a life you’d wish on your worst enemy; they call it the suicide disease for a reason.”
Sarah’s wish is for more people, GPs included, to understand chronic pain.
She would love for people to acknowledge the suffering from the condition, that it’s not in their head, and to set up support groups and education.
“It sounds so crazy but yet I’m living with it,” says Sarah.