ARTICLES FOR PATIENTS, LOVED ONES, & FRIENDS OF CRPS PATIENTS

ARTICLES ABOUT PATIENTS AND LOVED ONES 

SPOUSAL COMMUNICATION IMPACTS PARTNERS PAIN COPING 

INCURABLE PAIN LEADS PATIENT TO HOPE, FOR HIMSELF AND FOR OTHERS – Interview with Keith Orsini, Part One

CHRONIC PAIN COMPLICATES EVEN THE SIMPLE THINGS – Keith Orsini Interview, Part Two

Living With CRPS  or RSD Impacts Every Facet Of Your Life
NEW TO THE DISEASE? NEW TO THE WEBSITE? 

THE BEGINNERS GUIDE TO CRPS AND THE RSDHOPE WEBSITE TAKING YOUR LIFE BACK FROM CHRONIC PAIN 

Interview with American RSDHope Founder Keith Orsini

Hickory Daily Record

Posted: Wednesday, November 13, 2013 12:00 am

By SKIP MARSDENHICKORY NC – Imagine plunging your hand into a pot of boiling water – and leaving it there. Imagine a hot knife being thrust into your eye without being withdrawn. Imagine not being able to tolerate intense light or loud noises because of the pain each causes.

That’s a short list of the daily challenges Keith Orsini faces every day.

Orsini has what is called Complex Regional Pain Syndrome – aptly referred to as CRPS by acronym.

Symptoms of the condition began after Orsini was severely injured playing baseball. A freshman pitcher for his high school baseball team, Orsini was struck in the face by a line drive.

At the time, Orsini and his coach wanted him to shake it off and return to the game. His dad prevailed, however, and the young athlete went to the hospital.

“ It broke my nose and shattered my cheek bone,” he said. “I lost sight in my left eye.”

That was in the spring of 1974.

Orsini said he began to experience sensitivity to light and sound almost immediately. He also complained of constant pain and touch sensitivity.

His doctors told his father that Orsini was drug-seeking or a complainer. His efforts to get medical help were frustrating, he said.

“ Some people will tell you that God never gives you more than you can handle,” he said. “I don’t believe that. I always felt that God helps you turn things around.”

Orsini was not diagnosed with CRPS until 1993 – 19 years after his accident. He is 53 and has lived with his condition 39 years.

Turning things around

In 1995, Orsini’s family founded American RSDHope, a nonprofit organization dedicated to educating the public about this little-recognized condition. The family did not want others to experience what Orsini had gone through in getting a diagnosis.

“ At one time a patient with CRPS had to see around 10 doctors before getting a diagnosis,” he said. “Now, the average is three doctors.”

Their efforts were to reach physicians as well. Orsini said amputations of limbs occurred as a result of doctors thinking the pain would end with the removal of the painful site. The problem is CRPS can spread.

“ You have someone whose leg or arm has been amputated to end the pain, only to still have pain – minus the limb,” Orsini said.

To read the rest of the article – CLICK HERE 

There was also an accompanying piece written to this piece which you can read below;

Chronic Pain Complicates Simple Things

​From an interview done by Skip Marsden with Keith Orsini
Hickory Daily Record

November 12, 2013

For complex regional pain syndrome patient Keith Orsini, even the simplest things can be painful or complicated:

Showering:

Showers can be very painful, even with the right temperature. The needles of water are painful in themselves. A soak in a tub of warm water with Epsom salts is far better, but not so easy when you are a big guy. Tubs were designed 75 years ago and never updated for today’s larger people. Aqua therapy is the best form of physical therapy for CRPS patients but it has to be in a heated pool where the temperature is 86-90 degrees. Cold water works the same as ice (for CRPS patients). It causes pain by constricting the blood vessels, and damages the protective sheath surrounding the nerve.

Exposure to illness:

We take a lot of precautions; always using antiseptic wash whenever we get back into our car from school, the store, church – pretty much any time we are out in public. We are sure to get our flu shot each year. Still we get sick more than most people, but if we worried all the time about catching something we would never go anywhere or interact with anyone. It is simply the cost of living life. I tell the patients we talk to, you can seal yourself in a cocoon and try to protect yourself completely from harm. But that is no life. Don’t let CRPS steal your life away. Simply adjust your sails a little.

Clothing:

This is a big deal for us. I try to wear the softest clothes possible whenever I have to wear clothes. I wear shorts as much as I can. In the evening, I try to have my feet out of the end of the bed so the sheets don’t touch them. The light touch of clothing, sheets, or even a loved one on an affected area can be excruciatingly painful.

Dental:

Dental issues are a big problem. We cannot have root canals, and most of us suffer from severe dry mouth from the disease and the medications. Cavities are often a result. If the tooth gets bad enough it is too painful to have it worked on oftentimes and it has to be pulled instead. I have to be put under gas just a simple dental cleaning because of the pain involved in a dental cleaning; pain for me not for an average person. I have quite a few teeth that have been pulled over the years. I hope one day to have dental work done. Unfortunately, Medicare does not cover dental.

Food temperatures and spiciness:

Spicy foods can trigger a pain flare for me. Most people would find nearly all of my food to be bland.