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 

A New Beginning – How CRPS changed my Life (S's Story on her Road with CRPS)

CRPS – Complex Regional Pains Syndrome - 2017

 

Most doctors I have come across and still come across have never heard of it, let

alone dealt with it.

What is the first thing that comes to my mind when I hear someone has been

diagnosed with CRPS – get ready for the fight of your life, literally. It’s not called

Suicide Disease for no reason.

My new beginning began when a car hit me on my motorbike. It wasn’t a big

huge fast speed accident. I was going slowly around a roundabout. A broken

ankle is all I suffered at the time but along with that was also a crushed lower leg.

As I was told at the time, it’s a broken ankle, surgery and a few pins, six weeks in

a cast and you’ll be as good as new. Although the ambulance officers advised me

they believed that had I not been wearing my leather pants and high leather

boots I most likely would of lost my lower leg. That kind of gives you and idea of

the impact my leg took along with being pulled between a moving car &

motorbike.

Boy oh boy, the Doctors couldn’t of been more wrong!!! If my injury had been

dealt with better and had my crushed leg not continued to be crushed for 6

weeks while in a cast, then who knows what the outcome could have been. I do

believe that had I had a split cast for the whole 6 week period not just the final

few days that maybe, just maybe my CRPS may have not been as severe as it was

about to become over the next 12 months. But I didn’t and that is when my life

changed. Over the next weeks/months the pain was to become unbearable,

absolutely excruciating. I had 6 casts in 6 weeks. When the final cast was taken

off the damage the casts had made to my leg along with it already being crushed

and broken by a car was horrendous. The pressure of the cast against the sole of

my foot had caused it to become one big callus. This was just the beginning of my

2yrs of being a 24/7 drug dependent CRPS sufferer.

No one would listen, it was as if the professionals in the medical fields thought I

was imagining the pain, just pretending., being dramatic. I was basically treated

like I was someone who couldn’t deal with a little pain. I can tell you, pain give it

to me. I have always had a high tolerance for pain but this was no ordinary ache

or pain. I was even told at some stage during my initial treatment that I needed

to do a psychological assessment as I could be suffering from a head injury from

the accident. This makes you feel like you are actually losing your mind. I did not

hit my head during the accident other than a slight tap, and I had a helmet on. It’s

my left leg your treating people – hello!!!!

I ended up having to go on 12 months leave from my job. I was on 32 painkillers

a day, these included; paracetamol, ibuprofen, codeine, morphine, tramadol,

amitriptyline, a pain patch and last but not least the dreaded gabapentin, and yes

I was on all of these at the same time. I was absolutely mortified that I had to

take these drugs. I have never even tasted alcohol, never done drugs, never

smoked let alone taken a drug of any sort on a daily basis. I rarely even took a

paracetamol even if I did have a massive headache, but now there was no other

option. It was survival. I no longer had a choice. I was also booked in for cancer

treatment, as the pain meds I was on didn’t seem to be helping and the medical

professionals were at a loss to what to do with me. Due to the horrific side

effects that I could of ended up with this treatment I declined it and went with

my gut instinct.

I was on all of these prescribed pain meds for months, until I got things under

control and increased the gabapentin to a level that allowed me to cope day to

day so that I could stop using the other meds as well. Now when I say cope I

don’t mean cope pain free. I mean I no longer had to slide along on my bum on

the floor to go to the bathroom, as just a slight movement was enough to turn me

into a blubbering shaking mess with the electric shocks that would jolt through

my body due to movement. Showering was a nightmare, the pain caused by the

water touching my skin was unexplainable………..CRPS pain at it’s extreme, is just

unexplainable!!!! Sounds crazy I know, but it’s very real!

Along with the pain also comes all the side effects of the drugs. And with CRPS as

it is your nervous system it causes you to have the severest side effects. Every

side effect listed for every medication I was on I got. Dizziness, nausea,

diaohoera, constipation, blurred vision, headaches (migraines), loss of balance,

hair loss, memory loss, you name it I got it. The hardest side effect to deal with

was my short term memory loss, which I still to this day struggle with. To the

point after 12 months of leave from my job I had to resign. After a 23 year career

I had to accept I would never be able to return. It’s as if someone has removed

that part of my brain, but I have learnt to live with that.

When you read that living with CRPS is like filling your veins with lighter fluid

and setting yourself alight, this is no exaggeration. This was to become my life

24/7 for 1 1/2yrs. I would have so many electric shocks that my body would

convulse with uncontrollable movements, it was as if I had Tourette’s syndrome.

I literally had 100’s of electric shocks on an hourly basis. As you can imagine this

was extremely tiring. This is also when things started to go down hill…….my

CRPS started to spread……..

I ended up having CRPS in both legs and arms. It crept the whole way up my left

side including my neck and face. I was even getting CRPS in the back of my head.

This is very scary………..It’s bad enough when you are trying to cope with one

limb but when it involves the rest of your body you think ……I can’t do this

anymore. Please just someone, please make it stop!!!! As my body became even

more sensitive I also got a rash….every where. Just wearing clothes was painful

to the point I ended up having an open sore for months on my mirroring CRPS

leg. It felt like I had tiny shards of glass stuck all over my body in my skin, at

times it was just unbearable and I’d often break down. It was just too much to

cope with. There were some pretty dark days.

Now I’m a pretty stubborn woman and I will admit that even I had my moments

when I was ready to give in. I asked my partner on several occasions to please

just cut my leg off. I cannot bare this pain anymore…..it just gets too much, it’s

overwhelming. But reality is, this still wouldn’t guarantee the CRPS would go as

the nervous system works in mysterious ways and the chances of suffering from

a phantom limb was highly likely. I was also advised by my surgeon that worst

scenario could be amputation, at the time I was told this it made me even more

determined to fight CRPS, but living with it is a very different thing.

But then I’d think F**k you CRPS, I am not letting you beat me. This is my body

and I’m not going to let you win. That’s when I decided I was going to give CRPS

what it gave me. 12 rehab sessions a week, I pretty much made rehab my full

time job and F**K did it hurt!!!!! But I gave CRPS back what it gave to me, it’s the

only way I found I could beat it. Hands on treatment, even if it means that that

night the swelling is so severe you can’t even move. Even if it means it causes

more shocks, burning sensation, excruciating throbbing, pins and needles,

cramps etc. Because CRPS eventually realizes that you’re in control, you do start

to desensitize. Your nervous system doesn’t react as it had previously. But man

does it take it’s time to figure this out. I did full on rehab for 1 1/2yrs then slowly

as the symptoms decreased it I dereased the rehab.

I threw everything I could into rehab. Physio (gym based & hands on), water

therapy, gym (with physio), body massage, sports deep tissue massage. I did 2 of

these every day, 6 days a week. And it worked, slowly over time my CRPS

symptoms decreased. I was still having symptoms but instead of having 100’s of

electric shocks an hour it was 100’s a day, then a few a day, then a few a week,

swelling slowly decreased, the fire went out and things started to get better. I

was starting to feel normal again.

There was still months of rehab to come, not just for CRPS but also for what CRPS

had created. Due to the damage from the accident and CRPS I ended up getting a

club foot (damaged bones, tendons, ligaments etc) it had caused my foot to curl

under and my toes had become hammer toes (stuck straight up) also due to the

damage but also because of the excruciating pain. My toes had fixed themselves

in this position.

From the time my life changed I was bedridden for 4 months, on cruches for 6

months, in a moon boot for 8 months, off work for 1 ó years, couldn’t wear a

shoe on my left foot for 10 months (and when I did it was excruciating –

orthodics only), I lost career, put a huge strain on my relationship (we no longer

live together), and yes I am still a CRPS sufferer. I am in remission. I know it’s

there, it reminds me every day but after 2 years I was finally able to come off

pain meds. I was no longer drug dependent.

It has now been 3 ó years since my accident, my life will never be the same but I

didn’t let CRPS win.

What would I say to someone who has been diagnosed with CRPS - You are not

imagining your pain, it is very real, you are not losing your mind. Stay in control

of your body and fight with all your might. You can beat it, you just have to be

willing to do to your CRPS what it does to you. Fight!

I honestly don’t believe I would still be alive if I didn’t take pain meds

(Gabapentin), it is a horrible drug and yes it zombifies you but you learn to

cope/live with it. It allows you to bring the pain level down to a point that day to

day is an acceptable struggle. It allows you to do rehab and it allows you to live.

Complex Regional Pain Syndrome is incomprehensible, the pain is

unexplainable and to this day, remembering my journey with CRPS still

makes me cry. I will never forget that pain, you cannot forget it. It is

unimaginable but definitely beatable.

This is just a fraction of my journey with CRPS, but I hope it helps others

understand even if just a little what it’s like to be a CRPS sufferer and gives CRPS

sufferers hope…..even just a little.

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.