Monthly Archives: May 2009

Rare syndrome causes long-term pain

Rare syndrome causes
long-term pain

Treatment available for CRPS

Updated: Monday, 18 May 2009, 12:10 PM EDT
Published : Monday, 18 May 2009, 12:09 PM EDT

LAFAYETTE, Ind. (WLFI) – She broke her foot more than three years ago, and Kathryn Gist is still using crutches.

“The pain basically, it’s always there. It’s a constant. Nothing really takes the pain away,” said Gist.

Still in pain…although her foot has healed.

“I kept getting told the pain would go away in 6 months, every doctor kept saying 6 months and it just kept getting worse,” she explained.

Gist was referred to Dr. Tonia Kusumi at the Pain Care Center, who diagnosed her with CRPS, or Complex Regional Pain Syndrome, formerly known as RSD.

“CRPS is an abnormal response of nerves following an injury. The injury can be minor, like a needle puncture wound, or maybe more significant like a sprain or fracture,” said Dr. Kusumi.

“Even though my bones were healed and my tendons were healed, the nerves were basically overstimulated, they weren’t recognizing that everything was healed. So they were sending out all the pain sensors to my brain saying hey this isn’t right,” added Gist.

“What happens is the nerves don’t recover in a normal way. Which leads to pain that is greater than and lasts a lot longer than would be expected for a given injury,” said Dr. Kusumi.

Dr. Kusumi said CRPS is rare, affecting about 15,000 Americans each year. Patients typically describe their pain as a continuous burning with increased sensation. Gist described it as “all the pain senses rolled into one.” Dr. Kusumi said there are treatments for CRPS.

“The first is physical therapy, and medications that decrease the sensitivity and responsiveness of the nerves. However, some cases are more complicated and will require medications injected into the affected area of the nerves as well as a possible implantation of a device that stimulates the nerves at the level of the spinal cord,” said Dr. Kusumi.

So far, Gist has not found an end to her pain. Another injury to the same foot aggravated the CRPS.

“It just seems like with my luck this thing is never ending,” said Gist.

She is continuing treatment in hopes of getting her normal life back. Dr. Kusumi said every case is different, but early diagnosis and treatment often leads to better outcomes.

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Senate OKs RSDS awareness legislation


Senate OKs RSDS awareness legislation

05/19/2009, 10:09 pm addthis_pub = ‘sngii’; addthis_brand = ‘mywebtimes’;

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SPRINGFIELD — The Illinois Senate on Tuesday, May 19, approved legislation that seeks to raise public awareness of a painful neurological disorder.

House Bill 9,sponsored by state Sen. Gary Dahl, R-Granville, passed without opposition. The bill targets Reflex Sympathetic Dystrophy Syndrome (RSDS), a chronic syndrome characterized by severe burning pain, changes to bone and skin, tissue swelling and extreme sensitivity to touch that, if untreated, results in permanent deformity and severe pain.

If it becomes law, the legislation would create an educational program to raise public awareness of RSDS, which focuses on the nature and possible causes of the syndrome, the risk factors that may contribute to its development, various treatment options, and the availability of treatment and support services.

Dahl has pushed the measure at the request of Bea Danko, a Streator resident who lives with RSDS. After meeting with Danko at an RSDS support group meeting in 2008, Dahl agreed to sponsor legislation to promote awareness of the syndrome stressing the importance of early detection, diagnosis and treatment.

“Bea deserves enormous credit in moving this bill forward,” Dahl said. “When similar legislation I sponsored last year got bogged down due to political games, she kept the pressure on lawmakers to do the right thing. It was an honor to work with her in getting this legislation passed.”

The legislation is subject to appropriation by the General Assembly, though it would allow state government to accept private gifts, grants and donations to help pay for the program.

The measure now heads to the House for its final approval.


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Local teen overcomes debilitating disorder to finish high school at top of her class

Local teen overcomes debilitating disorder to finish high school at top of her class


BY CRISTINA TRAPANI-SCOTT

CLINTON — Imagine being a high school freshman. Those early days can be tough, navigating new hallways, new schedules and being the underclassman. Now, imagine that along with all the pressure of starting high school your body turns on you, swells and turns red or purple, so that all you can do is wear sweatpants and flip flops to school. A few kids around you do what kids will do when confronting difference. They tease you. On top of all of that the mere act of being in a crowded lunchroom is more than just emotionally painful. It’s physically painful.

For Clinton High School senior and valedictorian, Anabel Gilbert, the picture is all too real. At the start of her freshman year she was diagnosed with Reflex Sympathetic Dystrophy (RSD), a rare disorder that causes intense pain that is out of proportion to the severity of an injury. Little is known of the disorder and what causes its sudden onset, but unlike regular injuries the pain tends to worsen over time instead of get better.

Gilbert was 14 years old and at marching band practice when symptoms first surfaced. She put on her shoes and felt something in her foot pop. She said she didn’t think anything of it and made her usual trek home on foot. The pain worsened and she went to the emergency room that night. The doctor told her nothing was wrong, but by the next day her entire foot had turned purple. She said what followed was a series of trips to different doctors and specialists as her symptoms worsened. Finally, after nine weeks, a doctor at the University of Michigan Health System diagnosed her with RSD.

“I used to run six miles a night, and I asked the doctor when I would be able to run again. He said, ‘You’ll be lucky to be walking in a year,’” said Gilbert.

Early struggles with RSD
She was told that the disorder was rare and that there was no cure. She, however, wasn’t going to settle on losing her ability to walk at age fifteen. She turned to the Internet in search of more information on the disorder. “I still had dreams and hopes, but I found that most people who get this are in their 40s. Some were suggesting taking early retirement. I said, ‘But, I’m in high school,’” she said.

Gilbert did general Google searches hoping to find more people her age and found three other young women her age—one in California, one in Florida and one in New York. “The four of us started talking,” she said. “We said we should do something.”

What the four young RSD sufferers did was go where other young RSD sufferers might find them. They went to Myspace and started the Fight RSD page where they’ve invited those living with RSD and their friends and family to seek and offer support. Gilbert said that now the page has more than 1,000 friends supporting the cause.

In remission now, her road getting there has been long and fraught with huge hurdles that would seem daunting to anyone, let alone a teenager. She’s lived with pain so intense that she couldn’t even let her mother hug her, which for her added emotional pain since the two are extremely close. She said mornings were her best part of the day and by evenings the pain had grown so intense that often her mother had to write out her homework for her. She couldn’t do the things she’d normally done most of her life such as wrestle with her brother or even sit down. Gilbert said her breaking point was when she couldn’t even sit down with her family on Christmas and play cards because the pain was so intense. Her schoolwork suffered because she missed so much school. At one point, she was taking 70 pills a day to help with the intense pain. “The best description that I’ve heard from anyone is that you fill your veins with kerosene and light it on fire. I don’t remember where that came from, but that is the most accurate description,” she said.
Things changed for Gilbert when she decided to stop taking the medications after seeing a commercial that showed that people had been dying from one of the drugs she was taking. She said all of the pills weren’t working anyway. In addition to stopping medication, she spent two weeks in an intensive physical therapy program at Cleveland Clinic where she worked for eight hours a day to overcome the symptoms of RSD. “It was intense and really hard. They make you do the things your body is saying it can’t do, but they had me running again,” said Gilbert.

Life in remission
The senior, who is planning to attend Ohio Northern University to study forensic biology, has been in remission for two years. For her, that means she’s reached a point where the pain that she does feel is tolerable, and she’s able to maintain a relatively normal quality of life.

Gilbert has learned to adjust the way she lives so that she can deal with her symptom flare-ups. She’s made hundreds of trips to doctor offices and said that she’s had 300 X-rays taken throughout the past four years. She now also deals with other side effects such as scoliosis, because she’s had to walk differently to avoid pain. Still, she doesn’t let anything hold her back from doing what she loves to do and being like any other teenager. Because it was the act of putting on a shoe that caused so much pain, it took a long time for Gilbert to be confident in wearing shoes again. She, however, overcame her fear in her own way by buying many pairs of shoes. She also discovered that music can trigger episodes, but she has continued to participate in all of Clinton’s band programs. “I’ve been told to quit band a good 60 times. I figured I had two options. Go home and quit band and go into complete remission or stay in band. It will hurt, but I’m doing what I loved. Band has been great. Band is what saved me when I was going through the worst of this,” she said.

In addition to keeping up her activities, she rallied her grades back to finish at the top of her class. She said she’s learned to accept that RSD is part of who she is and embrace what it has given her. “In some ways,” said Gilbert, “I consider it a blessing in disguise. I’m a much better person for it. I’ve been able to take this and use it to help others.”
She has helped others. She’s not only created the Fight RSD Myspace page, but Gilbert has held fundraisers, selling buttons at school to raise money that she’s donated to the organization RSD Hope, which funds research on treatments for the disorder. She’s even been recognized by RSD Hope as an RSD Angel for creating a support network for the RSD teen community. “They [RSD Hope] are great. They really embraced the fact that I was reaching out to the teen audience,” Gilbert said.

Now that she is in remission, she said she has one rule. She insists her friends and family don’t ask her how she’s doing. She said she just wants to be treated like a normal teenager.

“It’s been a long road,” said Gilbert. “I’m very thankful to be where I’m at today. I shouldn’t be graduating or walking even, but I’m here and I’m honored to be a valedictorian.”

To learn more about RSD visit Gilbert’s Fight RSD Myspace site at www.myspace.com/fightrsd or visit the RSD Hope website at www.rsdhope.org.






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Autoantibodies in Complex Regional Pain Syndrome bind to a differentiation-dependent neuronal surface autoantigen


Autoantibodies in complex regional pain syndrome bind to a differentiation-dependent neuronal surface autoantigen

Danielle Kohra, Marlene Tschernatscha, Katrin Schmitza, Pratibha Singha, Manfred Kapsa, Karl-Herbert Schäfere, Martin Dienerc, Janina Mathiesa, Oliver Matza, Wolfgang Kummerg, Christian Maihöfnerf, Thorsten Fritzb, Frank Birkleind, Franz BlaesaCorresponding Author Informationemail address

Received 27 December 2008; received in revised form 3 March 2009; accepted 10 March 2009. published online 17 April 2009.
Corrected Proof

Abstract

Complex regional pain syndrome, which is characterised by pain and trophic disturbances, develops frequently after peripheral limb trauma. There is an increasing evidence of an involvement of the immune system in CRPS, and recently we showed that CRPS patients have autoantibodies against nervous system structures [6]. Therefore we tested the sera of CRPS patients, neuropathy patients and healthy volunteers for surface-binding autoantibodies to primary cultures of autonomic neurons and differentiated neuroblastoma cell lines using flow cytometry. Thirteen of 30 CRPS patients, but none of 30 healthy controls and only one of the 20 neuropathy sera had specific surface binding to autonomic neurons (p<0.001). The majority of the sera reacted with both sympathetic and myenteric plexus neurons. Interestingly, 6/30 CRPS sera showed binding to undifferentiated SH-SY5Y neuroblastoma cells. However, differentiation of SH-SY5Y into a cholinergic phenotype induced a surface antigen, which is recognised by 60% of CRPS sera (18/30), but not by controls (p<0.001). Our data show that about 30–40% of CRPS patients have surface-binding autoantibodies against an inducible autonomic nervous system autoantigen. These data support an autoimmune hypothesis in CRPS patients. Further studies must elucidate origin and function of these autoantibodies in CRPS.







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Woman, 20, paralysed for life after twisting knee while playing children’s game ‘stuck in the mud’


Woman, 20, paralysed for life after twisting knee while playing children’s game ‘stuck in the mud’


By Daily Mail Reporter
Last updated at 2:39 PM on 30th April 2009

A woman who twisted her knee while playing the children’s game of ‘stuck in the mud’ has been left in constant pain and paralysed for life.

Devastated Hannah Boyle, 20, thought she had suffered only a minor injury when she jarred her knee while ‘messing around’ with youngsters at a martial arts class.

But after two weeks of throbbing pain hospital scans revealed more than 20 blood clots had spread around her body and three potentially fatal pulmonary embolisms.

Hannah, of Plymouth, Devon, spent three weeks in hospital but the clots caused such severe nerve damage in her legs that doctors say she will never walk again.

She said: ‘I still haven’t come to terms with it – one day I was a normal girl, then I just twisted my knee while playing a simple game of stuck in the mud.

‘I can’t grasp the fact that every day, for the rest of my life, I’ll wake up in pain and not be able to walk.’

Hannah was injured in 2007 while working as a Jujitsu instructor and playing Stuck In The Mud with a group of children as a ‘warm down’.

As she leant back to allow a child to crawl through her legs she stubbed her toe and brought her weight down on her left knee.

She said: ‘I stepped back and stubbed my toe and went back on my heel. I just felt all my weight go on my knee and I lost my balance and my knee jarred.

‘I remember falling into a heap, feeling a lot of pain and then some of the instructors putting it on ice.’

Hannah went home with ice strapped to her knee and spent the next two weeks in and out of hospital complaining of throbbing pain and breathlessness.

Woman, 20, paralysed for life after twisting knee while playing children’s game ‘stuck in the mud’

By Daily Mail Reporter
Last updated at 2:39 PM on 30th April 2009

A woman who twisted her knee while playing the children’s game of ‘stuck in the mud’ has been left in constant pain and paralysed for life.

Devastated Hannah Boyle, 20, thought she had suffered only a minor injury when she jarred her knee while ‘messing around’ with youngsters at a martial arts class.

But after two weeks of throbbing pain hospital scans revealed more than 20 blood clots had spread around her body and three potentially fatal pulmonary embolisms.

Hannah Boyle

Tragic: Hannah Boyle, 20, will never walk again

Hannah, of Plymouth, Devon, spent three weeks in hospital but the clots caused such severe nerve damage in her legs that doctors say she will never walk again.

She said: ‘I still haven’t come to terms with it – one day I was a normal girl, then I just twisted my knee while playing a simple game of stuck in the mud.

‘I can’t grasp the fact that every day, for the rest of my life, I’ll wake up in pain and not be able to walk.’

Hannah was injured in 2007 while working as a Jujitsu instructor and playing Stuck In The Mud with a group of children as a ‘warm down’.

As she leant back to allow a child to crawl through her legs she stubbed her toe and brought her weight down on her left knee.

She said: ‘I stepped back and stubbed my toe and went back on my heel. I just felt all my weight go on my knee and I lost my balance and my knee jarred.

‘I remember falling into a heap, feeling a lot of pain and then some of the instructors putting it on ice.’

Hannah went home with ice strapped to her knee and spent the next two weeks in and out of hospital complaining of throbbing pain and breathlessness.

X-ray Hannah Boyle

Evidence: X-rays of Hannah’s lungs show the blood clots as dark spots. The blood clots spread round Hannah’s body and blocked the blood vessels in her lungs

‘I had X-rays but they weren’t sure why it was giving me so much pain, so I had to go back again,’ she said. ‘It was a constant, throbbing pain.

‘It was eventually found that a blood clot had formed around my knee and I also had other clots and pulmonary embolisms.

‘I can’t come to terms with the fact that I’ll have no independence and won’t be able to walk again – all that after an innocent twisted knee.’

Hannah suffered three pulmonary embolisms – blockages of arteries leading to the lungs – which could have killed her at any time.

She later developed post-thrombotic syndrome and complex regional pain syndrome and has to take 28 tablets each day, including morphine.

After two years of intense therapy Hannah has now been told there is no chance of her regaining the use of her legs.

She is appealing for help to to raise £5,000 for an electric wheelchair to help her in her daily life.

‘My life has been turned upside down by a simple game,’ she said. ‘I’ll never walk again and I’ll always be in constant pain, but I’m lucky to be alive.’







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