No relief in life of chronic pain

04:14, May 24 2013
Sarah Allsopp
ONGOING STRUGGLE: Sarah Allsopp has been battling chronic regional pain syndrome for years with mixed support from health authorities.

A Nelson woman who has spent half her life suffering from what has been dubbed "the suicide disease" wants to find other people with her condition.

Sarah Allsopp, 32, has chronic regional pain syndrome, or CRPS. Its sufferers have to live with unrelenting burning, stabbing pain, swelling, sweating and skin changes.

It's called the suicide disease because of the intense, unyielding pain it causes - and Ms Allsopp says it has driven her to try several times.

The condition, formerly known as sympathetic reflex dystrophy or causalgia (Latin for ‘burning pain') tops the McGill pain index, an international yardstick for measuring pain. It beats both amputation and childbirth.

Ms Allsopp has been living with it since she was 19. She spends her days at her Tahuna home, feeling stabbing pains when she moves or touches things, making it impossible for her to work, travel in a car, or even hug her partner of 15 years, Brendan Hollyman. Even the vibrations from a truck rumbling past are too much for her to bear.

"I go outside and birds are like needles, ramming in my brain," she said. "For the last decade I have given up a social life . . . I spent all my energy going to the doctors."

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Mr Hollyman said: "It's pretty hard seeing her. I can't do a lot to help her, just try and make her comfortable."

She cannot sleep for more than two hours at once. She has tried every medication available but has developed intolerances to most of them. She has struggled with depression and anxiety brought on by her condition. There is no cure.

But Ms Allsopp has suffered a triple whammy. She also has the BRAC1 gene mutation - the same as actor Angelina Jolie - which puts her at high risk for breast, ovarian, and bowel cancer. In 2007, she discovered a lump in her breast was cancerous, and she had a double mastectomy and reconstruction.

She has also had operations for endometriosis, which took eight years to diagnose. But because CRPS spreads through sites of injury, she has now developed the unrelenting pain at the sites of the operations.

Initially, she struggled to figure out what was wrong with her, seeing multiple doctors for her various conditions.

"Everyone kept telling me it was all in my head," she said. "You're being thrown to all these different people and they're just like, ‘I can't help you, I can't help you'."

She was particularly angry that it took so long for her endometriosis to be investigated when she had suffered severe pain and heavy bleeding every month from when she was 13.

"For eight years I asked to have a camera inside me but I was told that women just have to put up with pain every month," she said. She finally had the investigative procedure eight years later when she refused to leave her GP's office until it was organised. Multiple adhesions were then found on both sides of her cervix, both ovaries, bowel, bladder, appendix and kidneys.

She discovered she had CRPS in 2004, after visiting dermatologist Monty Hornbeck. He said Ms Allsopp was the only case he had seen in New Zealand, though he had several patients in the United States.

"[New Zealand] is a small country and this hasn't even been worked out in countries the size of America," he said. "She was so frustrated because everyone said she was just depressed."

Thoughts of suicide were common in patients with the condition, he said. "It's almost as if every movement is painful."

He believed some form of relief from CRPS would be developed some day, but that was a long way off.

In the meantime, Ms Allsopp said she tried to keep as calm as possible in order to cope.

She said finding some other people with the condition to communicate with would help a lot with that.

Contact naomi.arnold@ nelsonmail.co.nz if you would like to get in touch with Ms Allsopp.

Nelson