Pain victim finds she's not alone
Sarah Allsopp is thrilled with the number of responses she's had in her search for other people in the region suffering chronic regional pain syndrome, or CRPS.
"It's been amazing and heartbreaking, the number of replies we've had," the Nelson 32-year-old said. "I really don't think doctors can keep calling this a rare condition."
After a story in the Nelson Mail last Thursday, about 20 people with CRPS, often called "the suicide disease" for the intense and unyielding pain it causes its sufferers, have got in touch with her.
The respondents, from all over New Zealand and even the UK, have offered her help and support, and told their own stories of their health struggles.
She had heard from a former classmate at Christchurch's Shirley Intermediate, who was diagnosed two weeks ago, and from another former classmate's mother, who was diagnosed last year.
"Just imagine all the ones out there that are still undiagnosed not even realising what's happening to them, as my journey took five years to get diagnosis," she said. "Now others can connect with other sufferers and get a better understanding, and hopefully find ways to cope better and [be] less lonely." She will meet several people this week.
Several respondents to Ms Allsopp's story have told of their own battles to escape CRPS' constant pain, and similar struggles to find a diagnosis.
A 22-year-old Nelson woman, who did not want to be named, said she was "desperate" to find someone else like her. She has been unemployed since 2010 because she has not been able to work. "Nobody wants to help," she said. "I am having a very hard time seeking any treatment; doctors here assume because I am young it can't be that bad."
Another Nelson woman said her 17-year-old daughter developed CRPS after a fall while playing sport two years ago, causing her nervous system to "flip its switch".
"It was almost like she had had a stroke, with numbness and loss of muscle function, coldness and blueness to her extremities and then the awful pain," she said. "We were constantly made to feel like she was a hypochondriac and it was all in her head."
"She was off school for a very long time and my beautiful, motivated and outgoing girl had just disappeared into a scared, fragile, tearful mess who couldn't be left alone and was on a lot of medication." Now her daughter was fighting to get her life back through "sheer determination".
"It's an illness that turns you mental, to be honest," she said. "We were very lucky to have a huge support team of extended family and friends, my work colleagues, paediatricians, psychologists, nutritionists, teachers and tutors and the amazing nurses in the paediatric ward behind us once we got the diagnosis and things progressed."
She worked in the medical industry and said she knew she had to "push" to see her daughter treated.
"It requires a multifaceted level of care in order to cope with such a debilitating illness and the heartbreak of constantly going to health professionals who don't seem to want to look into the symptoms further is incredibly soul-destroying."
Richard Clement, of Tasman, suffered trigeminal neuralgia, also nicknamed "the suicide disease", for 23 years. He had similar symptoms to CRPS, with "horrendous searing pain" and "electric shock stabs".
He has been pain-free since he underwent a micro-vascular decompression (nerve surgery) nine years ago, though had six operations before that to try to correct the condition. He said he often heard the same comments Ms Allsopp received by people who did not understand his condition. "[They] therefore think ‘it's in your head' [or] ‘you're depressed, just get over it and the pain will go away'," he said.
The Nelson Mail