Monthly Archives: December 2012

People: CWMBRAN BOY BATTLING CHRONIC PAIN SWIMS TO RAISE CASH (Lewis Perham)

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Cwmbran boy battling chronic pain swims to raise cash

11:20am Saturday 21st July 2012 in NewsBy Andy Rutherford – Health correspondent

 

MAKING PROGRESS: Lewis Perham, nine, with brother Leo, seven, and parents Claire and Iestyn
MAKING PROGRESS: Lewis Perham, nine, with brother Leo, seven, and parents Claire and Iestyn

 

UNTIL a few weeks ago, Lewis Perham could not bear to feel water on his legs and feet.

But now the nine-year-old from Cwmbran, who has Complex Regional Pain Syndrome (CRPS), has completed a sponsored swim in aid of the hospital that is treating him.

Lewis gritted his teeth to complete a one kilometre swim at Llantarnam leisure centre, an effort that has so far raised more than £1,600 for the Royal National Hospital for Rheumatic Diseases, in Bath.

His health problems began last May with a slight knock on the ankles while playing rugby, which triggered a gradual physical reaction leaving his lower limbs so sensitive that more than a year on, he still cannot bear the weight of his bedclothes.

He has been wheelchair-bound since last August, and although he can now bear to touch his toes and has resumed swimming, he remains prone to excruciating pain in his legs, ankles and feet, caused by knocks, pressure or even wind and rain. Temperature changes are also a problem.

CRPS brings neuropathic pain, caused by nerve problems. Why or how it starts remains a mystery, though a simple injury like a sprained ankle can trigger it, even without nerve damage.

Incidence estimates vary from one-in-4,000 to one-in-18,000, but it is rare in children. Lewis is believed to be Wales’ youngest CRPS patient.

“We were lucky, we got a diagnosis pretty quickly. Some people wait years and the damage is harder to treat,” said Lewis’s mum Claire.

“Treatment was arranged at Bath, a specialist centre for CRPS, and he’s had two week-long stays.

“A lot of it is touch therapy, getting limbs moving, and there’s a lot of psychological input, to help cope with the pain.”

Further sessions have been postponed by administration delays with specialist NHS funding, but Mrs Perham said they have made a big difference.

“This will take a long time to treat, and he might not get back to how he was,” she said.

“He’s been very down, but he’s much more positive at the moment, because he can see the progress.

“He can bear to touch his toes, there’s more movement, and he’s thinking about things like swimming again.”

 

 

Click here to read the full article at the original site online.

 

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Research: CRPS wound healing study (link to participate)

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We recently received an email from a Clinical Researcher collaborating with doctors at St. John’s Providence Hospital in Southfield, MI on a study relating to CRPS.

The basis of the study is whether or not CRPS patients heal differently (more slowly?) than non-CRPS patients.

They have created a short survey in order to begin collecting data for this study (Link below) and have invited readers of this site to participate.

Thank you.
CRPS Wound Healing Study

 

 

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Mindfulness | Developing understanding of the concept and the science (Video)

 

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Daily Archives: July 16, 2012

JULY 16, 2012 · 1:31 PM

Mindfulness | Developing understanding of the concept and the science

Those who have come to the clinics for treatment of persisting pain including CRPS will have heard me talk about mindfulness. Introducing mindfulness into a programme offers an opportunity to create a potent ability to be aware and hence develop control over pain, anixety and stress. I teach simple exercises and encourage practice similar to the movement based training. Understanding why this can be an immensely valuable skill is important as a motivator to drive the continued practice that is necessary. To that end, here are several videos:

 

 

Click here for the full original article online and to watch the videos.

 

 

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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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People & Books: Jae De Wylde: Tragedy inspires novel

Tragedy inspires novel

Author Jae De Wylde with a copy of The Thinking Tank which she was inspired to write after the death of her daughter and a debilitating illness.Author Jae De Wylde with a copy of The Thinking Tank which she was inspired to write after the death of her daughter and a debilitating illness.
Published on Monday 5 March 2012 20:00

A MUM from Morton has dealt with the pain of losing her teenage daughter by releasing a novel in her memory.

Jae De Wylde, of Church View Close, lost her 15-year-old daughter to Sudden Adult Death Syndrome in 1999.

When a routine operation in 2004 left Mrs De Wylde with Complex Regional Pain Syndrome, the recovery process had to begin again.

Inspired by these events and channelling these negatives into something meaningful, she has now released The Thinking Tank.

She said: “The book deals with bereavement, betrayal and the rare opportunity for a second chance.

“I wanted people to see your past does not have to dictate your future.”

The title relates to the hyberbaric oxygen tanks that she spent many hours a week in to recuperate from her CRPS.

Mrs De Wylde wrote most of the book in Dubai.

She said: “The thing all the reviews have in common is that it’s a real page turner.

“It deals with difficult topics, but it is very accessible to everybody.”

The book can be bought from all Walker Bookshops or online at http://www.amazon.co.uk

Click here to buy the book.

Click here for the original post online.

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Technology: Calmare Pain Featured on Today in America TV with Host Terry Bradshaw (Video)

 

Technology: Calmare Pain Featured on Today in America TV with Host Terry Bradshaw (Video)

 

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Technology: Calmare Pain Featured on Today in America TV with Host Terry Bradshaw (Video)

 

 

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