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Monday, May 10, 2010
Wednesday, February 03, 2010
My twelve year-old, Matthew, was screaming in pain, as he had been doing for the past few weeks. In November of 2008, Matthew was diagnosed with a little known and even less understood neurological condition, now referred to as CRPS: Complex Regional Pain Syndrome. In simple terms, pain signals from his foot are constantly being sent to his brain, even though no injuries are outwardly apparent.
He was originally misdiagnosed with a broken ankle, prompting doctors to place his foot in a cast for several weeks. When the cast was removed, the pain continued to escalate and it took a team of physicians and trips to the emergency room, a series of MRI's and X-Rays, to finally settle on this one diagnosis.
Matthew's pain is so severe that he is unable to touch any part of his foot without triggering spasms of intense, burning agony. I fashioned a foam pillow for his calf, allowing him to rest his leg on top of the covers, safely supporting his foot well above the bed. Even his ceiling fan had to be turned off because it created a draft of daggers against his foot.
It is difficult to express the feeling watching your son cry and scream and experience so much pain that they say they wish they were dead. Even though he later admitted that he did not mean it, those words still pierce the air with severity and seriousness.
As parents, our first instinct is the overwhelming desire to protect our babies. The inability to relieve the pain by even the smallest of degrees is, to this father of three, a helpless and horrible feeling. A twelve year-old's days should not be spent in bed, away from school and his friends, and traveling to physical therapists, psychologists, neurologists and psycho-pharmacologists.
His initial battle with this syndrome and his "cure" less than two months later prompted me to write the chapter "Miracles" in my new book, The Last Day of My Life because his recovery was, simply put, sudden and miraculous. Ironically, while I was in New York, promoting this book of gratitude and hope, Matthew had a full relapse. His world and ours were once again shattered. The debilitating pain, which we all thought was gone for good, now frightened and angered him. CRPS was once again testing the resolve and strength of this wonderful boy. As his father, it humbled me and clearly reminded me that, even during that full year when Matthew was well again, I had fallen into a typical trap: I had taken his health for granted.
If you are a parent, be grateful if your child is healthy. Because nothing tests your spirit and faith like watching your child suffer. I know that my boy will recover. I have to believe that because, right now, it's the only thing that bridges the hope and knowledge of his recovery.
Wherever you are right now, take a moment and honestly consider the blessings in your life. Big things, small moments. It's never too late to count your blessings.
Click Here For The Original Article Online.
Compiled by Editor at 2/03/2010 02:16:00 PM
Tuesday, February 02, 2010
'Immune jab' treatment blocks chronic pain
A treatment already used for immune diseases like rheumatoid arthritis appears to also work for chronic pain, scientists have discovered.
One small dose of intravenous immunoglobulin (IVIG) reduced pain in just under half of patients treated.
The pain relief lasted five weeks, on average, with few or no side effects, Annals of Internal Medicine reports.
The Liverpool University experts now plan bigger trials on more patients with Complex Regional Pain Syndrome.
Also known as Reflex Sympathetic Dystrophy, Complex Regional Pain syndrome (CRPS) involves a malfunction of the nervous system that causes often unrelenting pain.
It usually develops after an injury or trauma to a limb, and continues after the injury has healed.
Experts are not entirely sure why some people develop CRPS, but the latest discovery of how to treat it suggests it might be partly down to inflammation and a heightened immune response to the damage.
The immunoglobulin treatment contains blood antibodies that help dampen inflammation.
We have seen the same in our patients in more acute stages of the disease
Pain expert Professor Franz Blaes
The team at Liverpool's Pain Research Institute tested the treatment on 13 of their patients who had been experiencing chronic pain for the past six months at least.
Although the treatment did not work for every single patient, for many it provided significant relief.
Lead researcher Dr Andreas Goebel said the real effect of this treatment in clinic may turn out to be even greater because the therapy can be given in higher doses, and repeated treatment may have additional effects.
"IVIG is normally repeated every four weeks and we are working to develop ways which would allow patients to administer the treatment in their own home," he said.
Professor Franz Blaes, of the University of Giesseu in Germany, has also been trialling the treatment in CRPS patients.
He said: "We have seen the same in our patients in more acute stages of the disease. Some of the patients really do benefit - probably between thirty and fifty percent of them.
"It may be that stopping the inflammation stops the problem.
"It is quite an expensive treatment and, as yet, we are not able to tell who will respond until we try it. But we are working on that."
Longstanding CRPS affects about 1 in 5,000 people in the UK.
Compiled by Editor at 2/02/2010 04:11:00 PM
Monday, January 18, 2010
W.L. family shares struggle to survive
Lost income leads them to skip medical treatments
Updated: Wednesday, 18 Mar 2009, 4:14 PM EDT
Published : Tuesday, 17 Mar 2009, 9:17 PM EDT
- Niccole Caan
WEST LAFAYETTE, Ind. (WLFI) - The Murphy family, Stephen and Sandie, lived their American dream--or at least were working to pay it off in a house in the Capilano subdivision in West Lafayette. For them, as for too many others, that dream is now disintegrating because of the challenging economy.
"After March, I'm not sure what I can do," said Stephen.
The move to the Lafayette area was a new beginning for the Murphys after Stephen lost his job in Ohio. He was unemployed for nine months when he found a management position with Wabash National. He became the Director of the Supply Chain, making sure trailers got to customers.
"In the last two years of the program, I made them $7.5 million," said Stephen.
That's why it was surprise when Stephen was told four years later he would be jobless--again. Wabash National gave him 10 weeks severance.
"I didn't have any indication I was going to be laid off," said Stephen.
Now, 14 months later, he's still looking for a job. The toughest part about being unemployed is Stephen's inability to provide for his children, especially his youngest, Bethany.
"She'll say dad can we do this? I say well, when dad gets a job. Well, one day she said dad are you ever going to get a job...I didn't know what to answer her," said Stephen with tears in his eyes.
A homemaker for 18 years, his wife Sandie decided to go to work to help the family through this second crisis.
"I was in complete shock, complete shock. I was in a panic," said Sandie.
But that never happened because Sandie had surgery on an ankle she hurt after a fall. Instead of recovering and getting back on her feet, she spends most of her days in bed. She developed a chronic, disabling, non-curable disease called Complex Regional Pain Syndrome after the surgery. It's a condition that worsens with stress.
"Tell me how to avoid stress given everything going on right now," said Sandie.
The disease makes Sandie's limbs feel like they are permanently on fire.
"Just to have my feet even resting on the carpet right now is extremely painful," Sandie said.
With no income, the Murphys' lifestyle is vanishing. They tried to sell their house, but couldn't find a buyer. Credit card bills, car loans, and a mortgage go unpaid as Stephen and Sandie struggle to provide necessities for their family of six.
"I got to the point it where it was either pay them or pay the electric and the food," said Stephen.
Finding help proved difficult.
"We're in kind of a gray area too, where we're not eligible for any government or state assistance because technically his unemployment, while its maybe a 10th of what his salary is, is technically too much to get food stamps," explained Sandie.
They pay $1250 a month for COBRA medical insurance, a priority due to Sandie's medical expenses. But even though they are covered, both Sandie and Stephen have forgone some medical procedures.
"You still have the copays and the copays are expensive," explained Stephen.
Stephen postponed a hand surgery and hasn't gotten an annual test for cancer. Cancer free for seven years so far, he hopes he continues to beat the odds until he can afford to be sure. Stephen spends his days searching for jobs. His resume lists executive positions at companies like GE and Colgate-Palmolive. He got a three-month temporary position, but all full-time prospects so far have fallen through. The Murphys say they no longer ask what else can go wrong.
"This sounds like a comedy of errors," said Stephen.
And they laugh, because they can't afford enough tissues to dry all the tears.
Compiled by Editor at 1/18/2010 01:29:00 PM
Monday, January 11, 2010
Friday, January 08, 2010
It was only a few years ago I ran into an old acquaintance named Silas. After catching up, he asked if I could help with a fundraiser for his wife, Amy, who suffers from Dystonia. It wasn’t too long after the encounter that I helped to organize the very first Shakey Amy event. During that time I learned more about Dystonia than you can ever imagine, so when my boss lady’s dad started telling me about a similarly little-known and understood disorder called CRPS or RSD, I was intrigued once again and wondered if there were any folks in Texas doing something like Amy and Silas, rather than just dealing with CRPS.
Enter Tricia Scott. Tricia was kind enough to tolerate my naivety and answer a ton of questions about the disease and her own organization, Triumph Over Pain.
Complex Regional Pain Syndrome (CRPS), previously known as Reflex Sympathetic Dystrophy (RSD), is a disease of the Autonomic Nervous System characterized by sharp, stabbing, burning pain, with edema, allydonia, and temperature differentials. In approximately 78% of all cases, CRPS spreads from beyond the initial site to a secondary site. In approximately 8% of all cases, it spreads to the entire body, becoming systemic. Usually caused by trauma, it is unclear why it affects only some individuals. While currently there is no cure for CRPS, progress in its treatment is occurring continuously and there is hope that a cure will one day be found.
How and why did you get involved with Triumph over Pain?
After attending the USC Quench the Fire 5K in Long Beach, CA in December of 2007, I knew I wanted to do something like that in the DFW Area. There are well-known RSD/CRPS communities on both the East and West Coasts, but nothing significant in this part of the country. I created Triumph Over Pain to bring about awareness for RSD/CRPS. Special care went into every aspect beginning with our logo. I wanted an organization that embodied the spirit of living with RSD rather than suffering from RSD. In a bit less than one year, we have surpassed the 1,000 member mark.
I have a friend who was diagnosed with Dystonia and suffered long until she found a doctor to properly diagnose her, let alone take her seriously. Do you find that many people suffering from CRPS and RSD have found themselves in similar situations? I understand that many spouses and doctors have the knee jerk reaction of the pain being psychosomatic. What is your advice for those who suspect that they or a loved one may have CRPS or RSD?
Sadly, you are absolutely correct. This common experience is the reason there is such a need for education and awareness for RSD/CRPS. Most with RSD go through a lengthy process until they receive a proper diagnosis. Many primary care physicians, usually the first to hear the patient’s complaints of pain, don’t know the symptoms or signs of RSD. Because they aren’t familiar with RSD, once the battery of testing reveals no affirmative result, the patient is told the pain is in his head. The amount of pain the patient expresses is completely disproportionate to the original injury. At this time, many doctors believe the patient is simply seeking drugs.
Spouses and loved ones will often believe the pain is psychosomatic and/or being manufactured to receive attention. Worse still, the patients themselves often begin to question whether their pain is real or imagined. All of us are familiar with acute pain (e.g., ankle sprain, broken limb). With acute pain, there is significant pain and then the injury heals. Thus, eventually (within a few days to a few months) the pain subsides and life returns to normal. With RSD, the pain is constant. Sometimes the pain is excruciating while other times the pain is dull and achy. Even though the initial injury heals, the pain remains.
My advice to those who suspect they or a loved one has RSD/CRPS is to seek diagnosis as soon as possible. I would suggest going to RSDS.org and comparing their symptoms to the known symptoms of RSD/CRPS. Early diagnosis and treatment is extremely important. The longer treatment is withheld, the harder it is to reach a point where the RSD is manageable.
My inspiration in creating the TOP 5K/10K Run Walk & Roll was the 1st Annual USC Quench the Fire 5K in Long Beach, California in December 2007.
The TOP 5K/10K event planned for May 8, 2010 will be held in McKinney at the beautiful Craig Ranch. This will be an event for everyone! We will have a 5K/10K (USATF certified courses) and a 1 Mile Fun Run Walk & Roll for those that wish to participate. This is an opportunity for those with RSD/CRPS to come out and meet others who have shared similar struggles in the past and who may be able to share their future triumphs.
I remember how inspired I was when I watched those with RSD cross that finish line, doing something they thought impossible. Adidas says it best, “Impossible is Nothing”.
A portion of the money raised will benefit RSDSA. Triumph Over Pain is currently awaiting our 501(c) 3. Once received, we will reach out to UT Southwestern and/or Baylor Medical to explore future pain research opportunities. Because the money is raised in North Texas, I would like to see a university in the North Texas area benefit by giving them a research grant for pain research.
Online registration for the TOP 5K/10K Run Walk & Roll will open in January 2010.
Registration will be available on triumphoverpain.org. We are looking for volunteers in addition to participants. If any of your readers would like to be involved in the planning or in volunteer opportunities the day of the event, we would love the help! They can contact me at firstname.lastname@example.org.
Click Here For The Original Article Online.
Compiled by Editor at 1/08/2010 01:00:00 PM
Austin man suffers from rare pain condition that has altered his life and his family's
Daughter hopes to educate public that early treatment can prevent cases as bad as her dad's.
in the home he shares with daughter Adrienne and wife Lynn.
Published: 7:35 p.m. Friday, Jan. 1, 2010
Seth Greenblatt of Austin had a full life as a mathematical scientist with a busy travel schedule, cycling to stay fit and attending his daughter's school plays. But in the past two years, his world has shrunk to a quiet room in his spacious home and the confines of a recliner where he laboriously taps out e-mails and sleeps.
He rides in a car only when necessary because road vibrations wrack his body. A vacuum cleaner in another room or a truck rumbling by outside cause him pain. Even a flutter of air across his skin hurts when someone walks by.
"All the normal things of day-to-day life cause some sort of misery for me," said Greenblatt, a married father of two.
Greenblatt, 49, has a relatively rare condition, known as Complex Regional Pain Syndrome, or CRPS (pronounced crips). It is a neurological condition that causes chronic, burning pain and can develop after an injury or surgery. It generally starts in a limb but can spread to other parts of the body, causing swelling, discoloration and the inability to move the most affected part of the body. Greenblatt's arms, legs, temples and back are now in constant pain.
"If someone doused you with gasoline and set you on fire and it never went out — that's the way it feels," he said. He has other pains, too: the sensation of wasps crawling and stinging him; a feeling of a glass shard or metal stake being thrust into his flesh; a sensation that his limbs are bent into an unnatural position when they are straight.
The disorder, also known as reflex sympathetic dystrophy, has been documented since the Civil War, said Dr. David Kloth, director at large for the American Society of Interventional Pain Physicians and president and medical director of Connecticut Pain Care. Between 200,000 and 1.2 million Americans are believed to have it, according to the Reflex Sympathetic Dystrophy Syndrome Association. No one knows what causes the pain to persist in people with the condition, but for some reason their nervous system malfunctions. Nerves misfire, producing a cycle of pain. It has no cure, so doctors treat symptoms, and sometimes, patients spontaneously get better and go into remission.
The longer people go without seeking care, the harder CRPS is to treat, Kloth said. But some patients go many months without a diagnosis because the illness is not well known, even by some doctors.
Nothing much has helped Greenblatt. He has tried a neurostimulator, which use electrical impulses to stop pain signals from reaching the brain, but it only made him feel worse, Greenblatt said. He takes 20 pills a day, including anti-seizure drugs and other medicines to slow down his nerve activity. He takes painkillers and wears a pain patch that is so strong his family members would risk poisoning if they touched it, he said. But the medications aren't helping much, he said.
"Nobody can touch my foot," he said.
"Someone touched him gently on the foot, and it hurt for days," said his wife, Lynn, 51.
Neither Greenblatt nor his doctor are sure what caused his right toe to swell one day in February 2008. The pain persisted and spread until he had to quit working six months later. Greenblatt said he had broken his right toe and stood on it for four or five hours at a concert five years earlier with his son Alek, now 22. He also suffered nerve damage in the leg from repeated bites from a brown recluse spider. "Any of these things could have possibly precipitated it," he said.
When the pain began nearly two years ago, his general practitioner thought it was a sprain. But when soaking his foot didn't work, his doctor referred him to an orthopedic surgeon, who thought he might have nerve damage, Greenblatt said. He tried physical therapy, which he said felt like "medieval torture." It wasn't until Greenblatt saw Austin neurologist Dr. Craig DuBois, a pain management specialist, in July 2008, that he got the diagnosis.
Greenblatt "is the worst (case) I've ever seen," DuBois said. His practice, which includes four other doctors who also treat patients with CRPS, sees about 15 to 20 cases a year, and while it's rare, "it's more common than one would think," DuBois said.
"We keep piling on more medications and treatment, and God bless his wife and daughter," DuBois said. "This ruins your social life. If somebody brushes up against you, they might as well have stuck a prod in you."
His 14-year-old daughter, Adrienne, is determined to educate people about the condition "so they don't end up like him." She has taken up the task as a Girl Scout project and spoken to groups and created a Web site (crpsawareness.ning.com) about the disorder. Adrienne, a freshman at Bowie High School, notes on her Web site that people who are treated within the first three months get the best results.
Her father's foot is now turned inward and is swollen from a lack of circulation. The skin is dry and blistery. It turns purple if he doesn't keep it elevated. He tries to move it every day, even though it hurts, and gets around on crutches when he has to get up.
"I told Adrienne I'm growing flippers," he joked. Greenblatt maintains a sense of humor and throughout a long interview didn't look like a man in agony. That is a challenge of the disorder; convincing people the pain is real and not psychological, doctors and family members say.
Greenblatt, who still has health insurance through his former employer, started an online discussion group for patients and loved ones, and it has grown to a few hundred people worldwide, Lynn Greenblatt said.
Suicide rates are high for people in chronic pain, DuBois said. CRPS usually is not fatal, although it can spread to the internal organs, including the heart and lungs and stop them from working, Greenblatt said.
He has little hope for remission, he said, but credits his ability to go on to a strong, loving family.
Checking his daughter's geometry homework at night is "the only thing keeping me sane," he said.
Adrienne said her dad's illness "had kind of turned me upside down."
She wrote on her Web site: "This disease controls my family's life ... It wasn't until my dad was diagnosed, that I realized how great my life is. I can dance, move, take showers, wear whatever I want and sleep normally. My dad can't. ... I realized I had to get the word out before anyone else got CRPS like my daddy."
She has written to some members of the Legislature asking them to sponsor a bill in 2011 to promote public awareness of CRPS and establish a research program with a goal toward early diagnosis and better treatments.
Lynn Greenblatt, whose father died in April 2008 while they were trying to figure out what was wrong with her husband, said she tries to stay positive.
"It's been a tough couple of years for my family, and you either sink or swim," she said. "I refuse to sink."
Compiled by Editor at 1/08/2010 11:07:00 AM
Corunna woman finds relief for “untouchable” pain
With community support, a Corunna mother has found some relief from the relentless pain she has suffered for years.
Angela White returned last week from a clinic in Florida where she received large infusions of ketamine, an anesthetic that is offering hope for the first time.
After three days of treatment, White's mother said she could see her daughter relax a little.
"I could see the difference," Jackie White said. "Even her face looked more relaxed. She's not perfect yet, she's still broken, but we now know she's a good candidate for this kind of treatment."
Angela White, 27, suffers from an uncommon condition called Chronic Regional Pain Syndrome, or CRPS, which is believed to be a disorder of the central or peripheral nervous system and produces constant pain and burning.
Apart from a two-year remission, she's felt acute pain since she was 13.
In desperation, the single mom and her mother appealed for financial help in November to get to the CRPS Treatment Centre and Research Institute in Tampa, Florida for treatments not available in Ontario.
The Ministry of Health agreed to pay the $8,000 price tag for the drug but not travel expenses.
After an article appeared in The Observer, many people called the Whites with prayers and money, Jackie White said.
"I went to pick up donations from a number of older ladies and they are absolutely wonderful people," she said.
The Shell station in Corunna where White regularly fills up surprised her with a $500 cheque. Her granddaughter's sledge hockey team contributed $200.
In total, the family received $2,000 toward the trip, which cost them $3,000 plus.
"It's wonderful," said Angela White who is spending a few more hours every day out of her bed thanks to the treatment. "I put the rest on my credit card and will pay it off as soon as I can."
Above all, the treatment in Florida has given her optimism, she said.
"I have more movement in the upper extremities and my pain threshold is a bit better. I know we're going in the right direction."
On the second day of treatment, her daughter Taylor celebrated her eleventh birthday and was able to hug her mom for the first time since she was a toddler.
"It was a really light hug but it made us both really happy," White said. "There aren't a lot of changes yet but there are changes to come. Taylor is ecstatic."
Ketamine is available in Ontario to CRPS sufferers in smaller doses, but patients like White require heavy doses for it to make a difference.
Some with CRPS are participating in experimental treatments in Mexico where patients are put into a coma while they receive massive amounts of ketamine.
That procedure is both risky and expensive - a $50,000 deposit is required - and White doesn't think it's within her reach.
The family is appealing to the Ministry of Health to allow pain clinics in Ontario to provide the same ketamine treatments currently available in Tampa.
Short of that, they hope the ministry will approve another four-day treatment in Florida within a few months when it's expected the first treatment will wear off.
The anesthesiologist at the Florida clinic, Dr. Anthony Kirkpatrick, assessed White and called her one of the "untouchables," her mother said.
"But after a few days of ketamine, Taylor could give her a gentle hug. Just knowing that there's an option that works makes a big difference for all of us."
Compiled by Editor at 1/08/2010 11:01:00 AM