Complex Regional Pain Syndrome - New Zealand

Thought it was about time NZ had its own website on CRPS/RSD so welcome to the first CRPS-NZ website, here we will discuss all things about CRPS/RSD .

All the clips etc are in date order, with the most recent up the top, to get to the older ones, just keep scrolling down. 

Thank You 

Jackie 

November 2013

3rd Degree Story on CRPS

 

Imagine you stumble and hurt your foot. It’s just a minor knock but it triggers something in your body and in your head. Soon you are racked by pain, pain that becomes so severe you can no longer walk. Everyday tasks become unbearable and yet most people seem to believe there’s nothing really wrong with you
.

Natasha Utting meets some young sufferers who experience just that – a debilitating pain condition that many doctors have never heard of. Left undiagnosed and untreated, the results can be devastating.

Click "here" to view the video

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June 2013

 A really interesting easy video explaining CRPS

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May 2013

Nelson Woman raises awareness of CRPS Part 1 & 2 

 

Sourced from "here"

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."

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.

- © Fairfax NZ News

PART 2

Sourced from 'here'

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.

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April 2013

Documentary that discusses the neuropathic chronic pain condition Reflex Sympathetic Dystrophy (RSD) or Complex Regional Pain Syndrome (CRPS)

This trailer for a 20 minute documentary discusses the neuropathic chronic pain condition Reflex Sympathetic Dystrophy (RSD) or Complex Regional Pain Syndrome (CRPS). Patients with the condition discuss their hardships, getting the diagnosis and how this truly horrible condition changed their lives. Medical professionals dealing with chronic pain patients describe the condition, what the treatments are and discuss the impact of this condition.

This is an important story to be told, so please share this with a friend, or maybe two or three :) Thank-you for taking the time for watching this.

The full version will be released mid-April 2013. Go to rsdcanada.org for information on RSD/CRPS, and to find out ways you can help.

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July 2010

The following is a video from 2 New Zealand women living with CRPS. This video is available to New Zealand viewers only sorry.

Click the link below:

"CRPS: Pain so bad you can't move"

 

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Jan 2010

What is complex regional pain syndrome discussed by Dr. Joshua Prager 

 

Dr. Joshua Prager, Director of the Center for the Rehabilitation of Pain Syndromes (CRPS) at UCLA Medical Plaza discusses What is RSD.

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July 2009

 Complex Regional Pain Syndrome is a condition where pain never goes away after an injury and even gets worse. The pain becomes a disease in its own right.

Click "here" to view the video 

Laura Black lives in a world of agony. She experiences pain on a level most of us can’t begin to imagine.

Sometimes the pain is so bad that you know you can't think about anything but the pain and nobody can touch you, nobody can do anything to help you. You can’t do anything to help yourself.