If there is one thing I have learned from this, it is to never give up hope.  I might not ever be completely rid of the pain, but hopefully I will be able to walk again.  Any minor injury for the rest of my life could cause another episode of RSD, but I am stronger now because of what I am going through.  I did not choose to be afflicted with RSD, but I have chosen to deal with it and make something of my life in spite of it.

Brandy N. Sachs
August 2008

Brandy Sachs is an amazing 22 year old.  In 2007 she graduated from Millersville University of Pennsylvania with a double major in English and Philosophy and a minor in Criminology.  She’s also started graduate school at the University of Pittsburgh working toward a Masters degree in Social Work.

Amazing enough, but Brandy has accomplished all this since being diagnosed with RSD / CRPS since she was 13.

But there’s wonderful news about Brandy today.  To find out more go read all about Brandy at her website Hope For Brandy.

Then read about Brandy’s Ketamine treatment for RSD in Germany written by her awesome parents Lisa and Gordy.

Thank you Brandy Sachs for being such an inspiration to all those who are battling RSD!

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Although RSD can affect anyone, there is some evidence that in teenagers it affects those that participate in sports more often.  Part of this is because injuries are more common for someone who is playing a sport and these injuries can lead to RSD.

Coaches, trainers and school nurses should be made aware of the symptoms of CRPS / RSD so that the athlete can be referred to a sports injury doctor who knows about RSD.

CRPS/RSD is believed to result from a malfunction of part of the nervous system that develops in response to an event the body regards as traumatic, such as an injury or surgery. Nerves misfire, sending constant pain signals to the brain. In addition to moderate-to-severe pain, tell-tale symptoms include hypersensitivity to touch, abnormal swelling, abnormal skin color, changes in skin temperature, sweating, limited range of movement, and movement disorders in the affected area.

RSDSA has an excellent brochure: CRPS/RSD and Sports Injuries:  Prevention is the Name of the Game.  Print it out and give it to your coaches and school athletic departments.

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Mike is a 24 year old student at Pitt studying Business.  He is also a salesman at Circuit City.

After recently undergoing knee surgery, he began to develop classic symptoms of RSD.  Fortunately for Mike, his doctors are knowledgeable about RSD / CRPS and have already begun treating him.

As most of you know, it is extremely important to begin treatments for RSD immediately especially the desensitization treatments.  When the diagnosis of RSD is made right away the outlook is good for a complete recovery.

Please visit Mike at Mike n’ Mad’s Adventures and leave him a note of encouragement for his battle with RSD.

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Senior volleyball player Kayani Turner has returned to play for her University of Illinois volleyball team after missing more than a season while battling RSD/CRPS.

Kayani Turner’s fight with the excruciating pain associated with RSD began in 2005 after acquiring a stress fracture in her left leg.  The injury healed, but during the 2006 volleyball season she began to experience severe pain in the same leg.  Everyone immediately suspected another stress fraction, but X-rays and MRI did not reveal that this was the case.

“In medicine, it’s something we call a diagnosis of exclusion,” said Dr. Jerrad Zimmerman, the team physician. “Before we could come up with a diagnosis of complex regional pain syndrome, we had to rule out anything else that could cause it. It can take months to diagnose because of all the testing it takes to rule out other possible etiologies of her pain.”

As her doctor explained, with CRPS, in very basic terms, even though an injury has healed, some of the pain fibers never shut off and continue to send signals to the brain as if the injury is still present. In Turner’s case, the pain she experienced from RSD became more intense than the pain she experienced from the original stress fracture.

The RSD took playing through pain to an unimaginable level, but Kayani Turner continued to play during the 2006 campaign.  Read more about Kayani Turner’s amazing comeback.

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RSD and You

by Emily

There are many good resources on the internet where people are willing to share their experiences with RSD and offer help and inspiration.

One of these is RSD and You.

RSD and You is an online support group that was started to help people with RSD/CRPS find hope, courage and strength through interaction with other members, positive communication, creating a solid support system and friendships that will motivate you and challenge you to truly live positively with RSD.

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Although the two terms are used interchangeably, the medical community refers to it as Complex Regional Pain Syndrome (CRPS).

In 1994, researchers and physicians from the International Association for the Study of Pain (IASP) reclassified the terms. These are:

  • CRPS type-I, which used to be called RSD (Reflex Sympathetic Dystrophy).
  • CRPS type-II, which refers to people previously diagnosed as causalgia, who also have sustained nerve injuries.

The National Pain Foundation goes on to say that the actual cause of RSD/CRPS is still not known and while many people develop the syndrome in similar ways, there is no single known explanation. Symptoms may come and go in the early stages and it is unknown whether some individuals are more susceptible to CRPS than others.

A number of factors are linked to CRPS, but the leading culprit appears to be mild to severe trauma such as injuries or surgery. Something as simple as a sprain can lead to CRPS. Many people who sustain some type of injury may show signs of CRPS, while others become affected after surgery or after experiencing a painful event, such as a heart attack or an infection in an extremity such as an arm or leg.  People with neurologic disorders, such as multiple sclerosis, can also develop CRPS, as can those with more chronically painful conditions such as carpal tunnel syndrome.

A severe type of this disorder, CRPS type II, may develop when people injure a nerve or nerves in an extremity such as an arm, leg or foot. Examples of this type of injury are gunshot wounds and crush injuries. Nerve injuries often are characterized by numbness or tingling and/or sharp, shooting and aching pain in the skin supplied by the injured nerve. This kind of pain is described as “neuropathic” pain and can be confined to a small area of the body. CRPS is likely to be occurring when that pain spreads to other parts of the extremity and beyond and the autonomic nervous system becomes disordered.

People with CRPS can experience a wide variety of symptoms besides pain and autonomic dysregulation, especially in the early stages of the disorder. These may include skin discoloration, muscle spasms, swelling and stiffness, feelings of heat or cold, dryness or excessive sweating in the involved area, excessive hair growth and xcessive skin sensitivity to even the light touch of clothing (a symptom doctors call allodynia).  There also can be extreme sensitivity to temperature and joint movement. In the later stages severe complications, such as persistent pain, muscle atrophy and a decrease in regional bone density, occasionally with fractures (osteopinia), may occur.

According to the Reflex Sympathetic Dystrophy Syndrome Association of America (RSDSA), the future is looking brighter for people with CRPS due to promising research underway at institutions in the United States and throughout the world. This research involves studying the basic processes that cause the disorder as well as developing more effective treatments for CRPS.

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Lindsay Wurtenberg was a typical 14 year old when she was diagnosed with RSD in November 2003.

After undergoing many treatments and therapies, Lindsay was able to start college this August 2008.

Read about Lindsay’s courageous battle with RSD on the website RSDBreathe.

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According to the National Pain Foundation, although the actual prevalence is unknown, CRPS is not a rare disorder. According to the Reflex Sympathetic Dystrophy Syndrome Association of America (RSDSA), CRPS may affect millions of people in the United States. Unfortunately, because symptoms vary so widely many people are not quickly diagnosed with CRPS.

Occurrence In Children

In children, the syndrome occurs in girls four times more often than in boys. Average age of onset of CRPS / RSD is 12.5 years. Most children with CRPS type I are from upper middle class families and are athletic.

A typical pediatric patient with CRPS type I is a female who participates in ballet, soccer or gymnastics. Researchers have hypothesized that there may be a genetic predisposition to CRPS type I.

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Meagan is a Senior this year at O’Connor High School in Helotes, TX. She has had RSD for at least two years now.

Meagan’s RSD has taken a turn for the worse. John Van Pay in his blog The Venture is requesting that anyone who suffers from RSD or knows someone who does please add Meagan to your prayers.

To read more about Meagan go to The Venture.

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Keith Orsini is a 34 year survivor of CRPS as well as one of the Directors and Founders of RSDHope a non-profit organization that promotes the awareness of RSD/CRPS.

In Keith’s personal blog, ‘Pain is A Four Letter Word‘, Keith continues to recount his experience with Hyperbaric Oxygen Therapy. Keith notes that CRPS patients have been seeing success with these treatments.

Best wishes to you Keith!

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