Category Archives: People

People: ‘You need to be a fighter’: living with CRPS (Paige Rodbard-Brown)

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TUESDAY 21 JANUARY 2014 UK

‘You need to be a fighter’: living with CRPS

The response to the story of one girl’s battle with complex regional pain syndrome has been huge. Here, sufferers tell Channel 4 News how Paige helped shine a light on a much misunderstood condition.

Eleven-year-old Paige Rodbard-Brown has a condition so painful it is rated above having an amputation without an anaesthetic.

She has lost the use of one arm and it is only in the swimming pool that she can at least move her legs freely. It is too painful for her to stand, and her knees are rubbed red because she uses them to get around.

When Channel 4 News brought Paige’s story to the airwaves on Saturday, there was a huge response from sufferers who shared her frustration about the lack of awareness about the condition. It took doctors months to correctly diagnose her with complex regional pain syndrome – an agonising condition with dramatic symptoms, but that is triggered by a very small injury.

In Paige’s case, the condition was triggered by a minor injury she had while playing football. Many did not believe she could be in such pain – another common complaint from sufferers, who make up one in 4,000 people.

Experts agree that there is a lack of understanding about the symptoms and treatment. One said in December that diagnosis was far too slow, which was resulting in a delay to treatment. Gill Thurlow, consultant nurse at the Royal National Orthopaedic hospital (RNOH), which offers a specialist CRPS programme, said:

“They’ve often been through a journey by the time they get to us. It can be a difficult journey. Some of the symptoms are very particular. I would imagine most GPs don’t see one [case] in their career, let alone often. It is unusual. It’s fair to say it’s poorly recognised.”

There is treatment available. After a two-week therapy course, Paige went from having no independent movement to being able to run on a treadmill. But the pain remains, and the after effect of the activity is often more pain.

@Channel4News My Daughter of 20 has had CRPS since Oct 12 from a knee injury, it’s been he’ll for her, we had to go private to be diagnosed!

— Cheeky Latte (@cheekylatte) January 18, 2014

@Channel4News Thank You for this report. The pain we feel is REAl, you cannot see it but we can feel it. Go Paige!

— AFMCG (@afmcg_uk) January 18, 2014

‘It’s all in your head’

Paige’s mother Nicola Rodbard-Brown, who described the condition as “heart-breaking”, toldChannel 4 News that there has been an overwhelming response from viewers wanting to donate money to the charity, For Paige. It is raising money for a wheelchair for Paige, and equipment, such as crutches, for other sufferers.

“Within two minutes of the news finishing, we had a donation of £500,” Ms Rodbard-Brown toldChannel 4 News. “We’ve had another single donation of £100. People don’t realise just what this means – that’s a good six or seven pairs of crutches.”

And aside from the money, the family has been contacted by fellow sufferers who said that Paige telling her story, helped them to articulate the severity of the condition.

Chelsea, 20, a CRPS sufferer in Liverpool who stays in a residential hospice, showed the report to her nurses and carers. Previously they had told her the pain was “in her head”, and the report was like a lightbulb moment – they finally understood what she was going through.

“She wants to meet Paige, and thank her in person, as she’s shone a light on to CRPS,” said Ms Rodbard-Brown. “There’s a lack of understanding – a constant thing of ‘it’s all in your head’,” she added. “Everyone has good days and bad days. For Paige, a bad day is a wheelchair, day, and that’s even if she can get out of bed.”

“We want to bring more awareness of the situation that Paige is in, and the many people out there having to live with this condition.”

Here are some of the responses Channel 4 News has received:

Lindsay Langdon: “I have CRPS. I am an adult and it is incredibly tough to live with. I am just so thankful that more people are getting to hear about it. Pain is invisible. And that makes living with it even harder. You need to be a fighter.”

Elisa Bayliss “My daughter is 13, and has CRPS in her leg. We went through hell, but she has come out the other end – not better, but coping with good and bad days. But much better than she was.”

Rebecca Grant: “Thank you for raising awareness of this condition, and of other invisible, chronic pain conditions as a result. Paige’s story is very sad, but also inspirational, as she seems like such a wee fighter.”

Natasha Knight: “My 10-year old-son suffers from CRPS in both feet and ankles and uses a wheelchair full time. He has been suffering for the last year, he was admitted to Great Ormand Street Hospital for a two week rehab program last February and went into remission for four months but unfortunately relapsed in June and has been back in his chair ever since.”

Louise Hilborne: “
My sister is in constant agony and she shouldn’t be. She went into hospital for what should have been a simple operation to remove a small growth under her toe. A neuroma. Her life has now changed beyond comprehension. She can’t work, can’t walk far, can’t do much at all… Who would have thought that such a minor procedure would or could trigger this debilitating condition?”

* Click here for the original article online.

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Community invited to fundraiser for HCFR paramedic with painful condition

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Community invited to fundraiser for HCFR paramedic with painful condition

Posted: Sep 23, 2013 4:31 PM EDTUpdated: Sep 24, 2013 7:59 AM EDT

By WMBF News Staff

HORRY COUNTY, SC (WMBF) – Local firefighters and paramedics are banding together to raise money for one of their own, a firefighter who is afflicted with a painful and debilitating condition.

Joe Coons has spent the last 12 years saving lives and helping others as a paramedic with Horry County Fire Rescue, according to Andy Brown with the Myrtle Beach Fire Department. Coons has been diagnosed with Parsonage Turner Syndrome and Complex Regional Pain Syndrome, debilitating conditions that have left him unable to work and with mind-numbing pain.

He spent two weeks in the hospital in July, and now he’s stuck at home while doctors say his prognosis is on the hinge, Brown says. His condition could get better, or the pain could spread.

Coons is a father of five and “is probably the best paramedic I’ve ever worked with,” Brown says.

On Tuesday night, his friends and colleagues from Horry County Fire Rescue and Myrtle Beach Fire Department are holding a fundraiser event to help the Coons family with their growing pile of medical bills.

The community is invited to a fundraiser dinner at Ron Jons Beer and Burgers Restaurant in Myrtle Beach from 5 p.m. to 8 p.m. It’s $7 for adults, and $5 for kids. There will also be to-go boxes available and a silent auction.

Those who cannot attend can still donate to the Coons family atwww.gofundme.com/coons-family

Copyright 2013 WMBF News. All rights reserved.

 

 

* Click here for the original article online.

 

 

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San Antonio RSD sufferer making remarkable recovery (Jonathan Haig)

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* * * * * Click here to watch the video on KSAT.com * * * * *

 

 

 

 

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People: A Prison of Pain

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Aug 13, 2013

A prison of pain

A prison of pain

Nikki Wesley / Metroland Media Group

Burlington teenager Megan Brown, 16, was recently diagnosed with Reflex Sympathetic Dystrophy (RSD), a condition that causes her such extreme sensitivity to touch, she said even a feather brushing against her foot feels like lava dripping onto her skin.
Burlington Post

 

The pain had gotten so bad Megan Brown wanted to end it all.

“You’re laying in bed and you’re touching the sheets and the sheets feel like they’re made of barbed wire,” she explained, her voice wavering.

The 16-year-old suffers from Reflex Sympathetic Dystrophy (RSD), a condition that causes her such extreme sensitivity to touch, she said even a feather brushing against her foot feels like lava dripping onto her skin.

According to the RSD Canada website, RSD is a debilitating disorder where the sympathetic nervous system becomes overactive and may cause numerous symptoms including burning pain, swelling, temperature change, skin colour change, diminished motor function and severe sweating. Symptoms may vary with each individual.

Brown sat on the couch in her Burlington living room, a room in which she has spent most of her time lately, she said.

Her right foot was swollen and purple and was propped up on a pillow on the floor. Her crutches, her main mode of transportation these days, were set at her side.

“There was a moment for almost two or three weeks where I was ready to give up,” Brown said. “I was telling them, just cut it off, shoot me, do whatever, just make it stop.

“I sort of withdrew and went into a depression. It was bad,” she continued. “What made it worse is that I knew I was hurting my mom because I was spending a lot time crying and telling her just kill me. I wasn’t joking, I wanted to die.”

But then she got a call from the Burlington Humane Society and her outlook changed drastically. The shelter said they had just found four week-old kittens at the side of the road and would Brown mind fostering them?

“I thought maybe this is what I need,” she said. “So I said, ‘Yes.’ We went down, we picked them up and they’ve been here ever since and, next to my parents and my sister, they’re my safety line.

“They are what I live for at the moment.”

As she bottle fed Baby Doll, the smallest of the kittens, Brown acknowledged the fact the kittens would soon grow up and would have to go back to the shelter. “But they’re my kittens. They’re my babies,” she said with a smile.

Before she was stricken with RSD, Brown hoped to pursue a career working with animals, possibly as a veterinarian or a conservation officer.

“I was looking at becoming a conservation officer and that would require weeks of being out in the wilderness, being able to run, being able to do all sorts of things,” she said.

“I’ve had to give up on a dream but I’ve got a new one and that’s what counts,” she added holding up one of the squeaking felines.

Brown started feeling the symptoms of RSD three years ago. Her first indication anything was wrong was the difference in temperature between her right and left foot.

“One was warm and the other would be freezing cold,” she said. “We just put it off as a circulation problem.”

Then she started getting pains in her legs and her foot, which doctors wrote off as growing pains or sprains.

However, in April the symptoms worsened. Brown had somehow injured her back and was resting at home when she asked her sister Amy to get her a pair of socks because her feet were cold.

“She looked and said, ‘Your foot is completely blue,’” recalled Brown. “And it looked like I’d been out in the snow for an hour.”

She said her mom, Barb Brown, rushed her to the hospital where doctors performed a battery of tests but could not determine the cause of the discolouration. She was then referred to several specialists.

“All the doctors were saying basically the same thing, ‘There’s nothing wrong,’” she said. “I know there’s something wrong, it hurts and it’s blue and it’s swollen and you’re telling me there’s nothing wrong. I had one doctor say, ‘Maybe it’s all in your mind.’”

Eventually the Browns were referred to a specialist who was able to diagnose her with RSD. Despite the diagnosis, the doctor said there was nothing they could do except pain management, Brown said.

Brown described RSD as an “invisible disease” because not many people know about it, including those in the medical profession, making it difficult to diagnose.

Recently, the family met with Sandy Smeenk, the founder and executive director of Improving the Life of Children (ILC) Foundation, which advocates for young people suffering from chronic pain illnesses and promotes peer support.

“Because best practices in medicine do not exist for complex chronic pain, they continuously fall through the cracks of care,” said Smeenk. “They are moved through the healthcare system specialist by specialist with no answers and largely they suffer in silence at home.”

Smeenk said the ILC Foundation is helping Brown better navigate the healthcare system and is working to put the teen in touch with other young people going through similar circumstances.

“That will allow them to connect and not feel isolated and alone,” she said.

 

 

 

Click here for the original article online.

 

 

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Brown’s mom, Barb was grateful to have been put in touch with the ILC Foundation because she said the last few months have been “hell.”

“Moms are supposed to be able to make stuff better,” she explained. “To know I can’t do anything, it hurts, and to see her in pain…”

Brown’s father, Barry, said he hoped his daughter telling her story would raise the profile of complex chronic pain illnesses within the community.

He said, “The more people who are aware of it, maybe it will push people to perhaps look for it because they’re more aware that there is this thing out there.”

People: Nothing routine about this Mt Eliza student (Elise Robinson)

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Nothing routine about this Mt Eliza student

12 May 08 @ 10:01am by Heidi Bergmeier

Nothing routine about this Mt Eliza student

Nothing routine about this Mt Eliza student

THE “no pain, no gain” adage doesn’t quite cut it when describing the odds that Elise Robinson has beaten to seal a spot in the interschool state aerobic finals on May 31.

The year 12 Mt Eliza Secondary College student, who suffers from the debilitating neurological syndrome reflex sympathetic dystrophy, accomplished mission impossible when she fought extreme pain and asthma to take out second place of the senior female singles state preliminary finals in Moorabbin on May 4.

The star student with an A-grade average said she was called to the stage at 8.45pm, a time when the syndrome usually forced her into bed.

“I can’t believe that living with what I have you can do it,” Elise said. “Determination will get you there. If you use all of your resources around you, you can get there.”

Elise acquired RSD during surgery to repair ankle ligaments in 2005.

RSD is characterised by burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling and extreme sensitivity to touch.

Details: http://www.ozrsd.org.

Click here for the original article online.

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People: Gina’s Story (from TheChive.com)

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A brave Chivette needs our help. This is Gina’s story

FEBRUARY 19, 2013


It all began in March of 2011, when Gina Mercieri was t-boned by a Chevy Truck that ran a red light going 45 miles per hour. Luckily, 27 year-old Gina walked away with only a hairline fracture to her left arm. After 8 weeks, Gina’s bone had healed but the pain in her arm had grown worse. Doctors told her the pain was in her head. Gina knew better, “It was as if somebody was filling my arm with lighter fluid and lighting a match.”

After bouncing around from doctor to doctor for a year, Gina finally got a diagnosis. The fracture to her left arm had triggered the onset of a disease so rare and sinister, its nickname is the ‘Suicide Disease.’ Complex Regional Pain Syndrome (CRPS).

Complex Regional Pain Syndrome is a chronic nervous system disorder that can affect any area of the body. It often occurs with a minor injury to the arms or legs. When left undiagnosed or untreated it can spread to the vascular systems, cutting off circulation to all parts of the body, including major organs. There is no known cure.

On the McGill Pain Index CRPS is ranked 45. The burning pain somebody with CRPS experiences trumps not only childbirth, but also the acute amputation of fingers and toes. Gina experiences this degree of suffering on a daily basis. The episodes are so excruciatingly painful she will often black out.

If CRPS is caught early, it can be contained. The year Gina lost in misdiagnosis cost her dearly; living with CRPS has become increasingly difficult. The disease spread from her left arm to her left leg, then quickly to her right shoulder. It wasn’t long until CRPS began its assault on her immune system. Gina’s immune system tries to fight CRPS as if it were some sort of infection. The disease has invaded her respiratory system, causing shortness of breath and absent siezeures. Even worse, it prevents her from sleeping. Gina no longer experiences REM sleep. Without sleep, Gina’s immune system cannot recover. Her body is fighting a war against an invisible enemy and the gas tank is perpetually empty.

Three months ago CRPS accessed Gina’s nervous and circulatory systems, which causes progressive damage to her internal organs. Gina’s digestive tract is obliterated. The physical act of eating food is nearly as painful as its digestion. Her short term memory is fading. Gina will randomly lose her sight completely and without warning.

Living with CRPS is a contradiction in terms, it’s not really living at all.

For many with this disease, the only release they see is suicide. Last year, Gina joined a support group for patients with CRPS. At the time, the group was 11 people strong. That number has since whittled down to eight. The last incident, a man ended his life by throwing himself in front of a bus.

I was nervous to meet Gina. I worried that her flight from her home in New Hampshire the evening before would have exhausted her. Do I hug her? Would that hurt her? Can she walk ok? Gina arrived at theCHIVE offices with her boyfriend, Marine Corps Captain Jason Back. She walked up and gave me the biggest hug, “I’m a hugger” she said. The only thing I could think to say was to tell her: “Hi, Gina, we’re here to get you the help you need.”

 

 

 

Please click here to read the full article on the TheChive’s Website.

 

 

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People: Cynthia Toussaint: Drug-Free Remedies for Chronic Pain

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Drug-Free Remedies for Chronic Pain

Escape from pain — without drugs

by: Loolwa Khazzoom | from: AARP The Magazine | Jan./Feb. 2009 issue

In the early 1980s Cynthia Toussaint was a promising young dancer, close to snagging a role in the hit TV series Fame. But then she tore a hamstring in ballet class. Usually such tears heal on their own, but in Toussaint’s case the injury led to the development of complex regional pain syndrome—a little-understood disease characterized by chronic pain that spreads throughout the body and can be so excruciating that even the touch of clothing hurts.

“It felt like I had been doused with gasoline and lit on fire,” recalls Toussaint, now 48, who was a student at the University of California, Irvine. “I can’t imagine surviving something more devastating.”

Toussaint had become one of the many Americans suffering from chronic pain—as many as 76 million, according to the American Pain Foundation—who are dealing with everything from arthritis to cancer. And like many pain patients, she struggled to convince doctors her symptoms were real. Toussaint says she was refused X-rays, misdiagnosed, and dismissed as crazy. “One doctor patted me on the head, saying, ‘You’re making a mountain out of a molehill, darling. You need to see a psychologist,’” she recalls. Meanwhile her disease—often reversible if treated early—only got worse.

Bedridden and folded up in a fetal position, she was unable to brush her hair, shower, or use the bathroom unaided. She teetered on the verge of suicide. Finally, after 15 years, a switch in medical plans introduced her to doctors who believed her. But by that point, the pain medications they prescribed could not reverse her condition. Worse, the drugs left her with a slew of side effects.

Toussaint wanted to try physical therapy for pelvic pain, and a movement therapy called Feldenkrais, ideas her doctor initially dismissed. “He rolled his eyes and said, ‘It’ll never help,’” she remembers. Ultimately, however, the move led her into the world of alternative therapies—and saved Toussaint’s life.

When she first began working with a physical therapist, Toussaint was so sensitive that the slightest touch caused her intense pain. So the therapist, sitting at Toussaint’s bedside, used guided imagery, a deep-relaxation method scientifically proven to reduce pain levels.

In guided imagery, a therapist helps a patient imagine herself in a calming place. Many patients visualize going to the beach or the mountains. Toussaint conjured up a make-believe ballet class, where week after week the therapist followed Toussaint’s verbal cues to guide her through elaborate combinations that she “danced” in her head.

Her body quickly began unfolding. Within one month of starting the three-times-a-week guided-imagery sessions, she could sit up, walk around her condominium, and shower without help. Perhaps most significantly, she was able to receive hands-on physical therapy, which further reduced her pain. She later cofounded For Grace, a nonprofit that helps women with chronic pain.

How is it possible that simply by engaging her imagination, Toussaint began healing her pain? New advances in neuroscience shed light on the process, says Martin Rossman, M.D., author of Guided Imagery for Self-Healing (New World Library, 2000). “While acute pain appears in areas of the brain that are connected to tissue damage, chronic pain lives in other areas of the brain—the prefrontal cortex and limbic system, which the brain uses for memories, especially emotional ones,” Rossman says. In some cases “the pain lives on long past the time when the body tissues have healed.”

Repeated thoughts and emotions create nerve pathways in the brain. Chronic pain impulses travel along well-worn pathways. By using techniques such as guided imagery to build new nerve pathways, “the pain pathways can become less active,” Rossman says.

Guided imagery and Feldenkrais, the therapies that helped Toussaint, are only two out of more than a dozen alternative therapies that have been scientifically documented to ease chronic pain when drugs can’t. And they frequently can’t, says James Dillard, M.D., D.C., coauthor of The Chronic Pain Solution (Bantam, 2003). “Even if we prescribe medication as well as we can, on average we are still only going to take away between 50 and 60 percent of your pain.”

Click here to see the full article on the original site.

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