CRPS/RSD is a chronic neuro-inflammatory disorder. It is classified as a rare disorder by the United States Food and Drug Administration. However, up to 200,000 individuals experience this condition in the United States, alone, in any given year.
CRPS occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain. The level of pain is measured as one of the most severe on the McGill University Pain Scale.
CRPS generally follows a musculoskeletal injury, a nerve injury, surgery or immobilization.
The persistent pain and disability associated with CRPS/RSD require coordinated, interdisciplinary, patient-centered care to achieve pain reduction/cessation and better function.
It has been shown that early diagnosis is generally the key to better outcomes. However diagnosing CRPS/RSD is not a simple matter and many patients search for months or years for a definitive diagnosis.
It is important to know that research has proven that CRPS/RSD is a physical disorder. Unfortunately, it has not been unusual for medical professionals to suggest that people with CRPS/RSD exaggerate their pain for psychological reasons. Trust your body and continue to seek a diagnosis. If it’s CRPS/RSD, the pain is not in your mind! But CRPS – is still a chronic pain disease that often goes underdiagnosed.
Dr. Billy Alexander, an internal medicine physician from West Monroe, Louisiana understands.
“Surprisingly, some physicians are somewhat skeptical about it,” he said. “But I know it’s real.”
Alexander knows CRPS is real because his daughter injured her hip as a 21 year old varsity college basketball player and developed it. It taught him much as both a doctor and a father.
He since has developed a relationship with the RSDSA which supports the CRPS community and has become vocal in helping educating physicians and other medical providers about it.
Dr. Alexander takes his message to the American College of Emergency Physicians annual meeting in Boston this week. He’ll be in the RSDSA booth meeting with as many emergency room physicians as he can. As a former E.R. physician himself, Alexander has two messages for the emergency room doctor.
- Understand that CRPS is Real
- Ketamine injections may help in treating CRPS
More on ketamine in a moment.
First, there is the diagnosis.
48-year old Linda Avallone of North Royalton, Ohio has had CRPS since 2011 and she knows the challenge that an emergency room setting can pose for CRPS sufferers.
A year ago, she had to go to the emergency room. She had suffered a Transient Ischemic Attack, which presents as a stroke and the patient is often disabled for a temporary period of time.
“I was in the emergency room and was babbling,” she said. “But I was trying to tell the doctors and nurses who treated me that I had CRPS, and kept pointing to my bracelet.”
But the doctors and nurses weren’t listening at first. After the TIA symptoms subsided, she tried to explain her CRPS.
“They were treating me like a drug seeker,” she said. “I was so frustrated.”
A paramedic was able to finally clear it up for the ER staff, but Avallone had sat in the ER for ten hours, with no pain medication. Because she her medical power of attorneys were finally able to talk to the pharmacy, finally they relented.
“Doctors and nurses should actively listen and don’t assume that the patient is nothing other than someone seeking pain medication,” she said.
Avallone actively educates medical providers and other who come in contact with the public like policy and EMTs through her work with the Ohio Fire and Ice Angels.
“It can help stop the stereotyping that we have to endure.”
Chronic pain advocate Gracie Gean Bagosy, who also writes for the National Pain Report, had a similar experience to Avallone’s.
“I recommend everyone with CRPS keep copies of the RSDSA CRPS ER Protocol and Hospital Protocol with them at all times. I keep copies in my purse,” she said. “These documents contain an easy to understand explanation of what CRPS is along with instructions on how you should be cared for. Be sure that your loved ones know where these documents are in the event of an emergency as well.”
RSDSA Vice President Jim Broatch is also attending the Emergency Room Physician Meeting in Boston with Dr. Alexander. They are passing out the following information to ER docs they meet at the conference.
If you have CRPS, are a medical provider or know someone with CRPS, you might want to print these and have them handy because as Lynda Avallone and Gracie Gean Bagosy can tell you, “you’ll never know when you need them.”
Now about that ketamine injection to help ER patients. Dr. Alexander says that he’ll be sharing with physicians he meets with that ketamine often works for the CRPS patient.
“The emergency room physicians are very familiar with ketamine,” he said. “They use it often when they treat pediatric patients who might have lacerations or broken bones. Educating them about the potential efficacy of ketamine on CRPS patients is something else we will be sharing this week in Boston.”
Alexander understands that one potential drawback for ER docs will be time, or the lack of it. Generally, he says a four-to-six hour injection works best with CRPS patients and ERs are trying to move their patients in and out of the emergency room in half that time.
“But doctors want their patients to get better. Our job is to share the information with them and see how they can better help their CRPS patients,” he concluded.