Keith and Betsy also moderate the RSD Hope Teen Yahoo Group.  It is a very active group of teenagers with RSD.  Everyone in the group is incredibly helpful and understanding.

Keith and Betsy have been through a lot wit their RSD, but with their determination and perseverance they have gone on to help so many people of all ages who have RSD.

If you are a teenager who has RSD or whose RSD is in remission or if you have a brother or sister or friend who has RSD and want to help them out by understanding what they are going through, please join this group and become active in it.

You don’t have to participate if you don’t want to.  Just by reading the post from other teens with RSD you will know that you are not alone.  And that is the most important thing to remember – You are not alone in your fight against RSD.

So please check out RSD Hope Teens and join the RSD Hope Teens Yahoo Group.  You will help yourself and others by sharing your own story about RSD.

Her story is typical of many who have developed CRPS.  She developed reflex sympathetic dystrophy over two years ago after injuring her ankle.  Her ankle injury actually healed but then the pain came back worse than ever.

Since then she has devoted herself to promoting the awareness of RSD through her awesome blog Rellacafa.  Caf is an excellent writer and artist and she tells much of her story with the use of video.

Caf’s positive outlook and her sense of humor gives hope to all those suffering from RSD / CRPS.

Caf thank you for being such an inspiration and for promoting the awareness of RSD!

By the way, you can follow Caf on Twitter too.

Her parents became frantic contacting local doctors who had no answers and some who even said that her problem was all psychological so all they did was prescribe high doses of ibuprofen.

It wasn’t until three years later that doctors at the Pittsburgh Children’s Hospital diagnosed her with Reflex Sympathetic Dystrophy (RSD) or Complex Regional Pain Syndrome (CRPS).

As Lacy’s mother Vicki Walker said,”Physicians are not in tune with RSD.  That’s a huge problem.”

And this really is a huge problem that many kids with RSD are still not being diagnosed early.  Of course its difficult to diagnose RSD / CRPS because there are no easy blood tests or x-rays that can tell that a person has RSD.

The good news for Lacy was that once she was diagnosed with RSD she began months of intensive physical therapy which was necessary to “reboot” her nervous system.

Lacy’s RSD is now in remission and she has resumed a normal life of a thirteen year old.

But Lacy’s story reminds us that we should help make people aware of RSD/CRPS so that it can be diagnosed quickly so that treatments can begin immediately.

Soon after she started having a pain in her hip that moved to her feet and then to her knees.  Her skin became so sensitive that the slightes touch caused pain.  As is common with these cases, her doctors were not sure what she had and prescribed light physical therapy.

Her RSD pain became so intense that she had to be carried to physical therapy by her parents.

Finally in 2007 she was diagnosed by Dr. David D. Sherry, director of clinical rheumatology at Children’s Hospital of Philadelphia.

Delaney made incredible progress in Dr. Sherry’s program.  Read the rest of Delaney’s story here.

When she was 12 years old she was diagnoses with fibromyalgia by doctors at Emory University Hospital in Atlanta.  When she was 15 she noticed that the pain was becoming more frequent.

Tonya who lives in Bermuda has been able to find relief from the pain by doing physical therapy in a swimming poo where she performs a variety of stretches and exercises.

Tonya’s hope is to overcome the pain so that she can continue her studies.  She is looking for an indoor pool in her areas to continue her physical therapy.

Click here to find out more and to register for the 2008 Quench the Fire 5K Run/Walk/Roll.

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.

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.

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.

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!