Teaching the Physician About CRPS

Teaching the Physician About CRPS

By Ed Coghlan

Ask a CRPS patient about his or her experience with physicians and you’ll probably hear something like “It took months for me to get a diagnosis.”

It’s true.

In fact, the average CRPS patients sees four doctors before he or she can get a diagnosis.

RSDSA, a national non-profit, has partnered with the American Academy of Pain Management to offer two accredited educational courses on CRPS.

“Our goal is to minimize the time between onset of CRPS symptoms & diagnosis,” said Jim Broatch, RSDSA Executive Vice President. “We firmly believe that an earlier diagnosis will lead to better treatment outcomes.”

Dr. Phillip Getson, a New Jersey physician, will teach the courses. He feels strongly that CRPS is still badly misunderstood.

“There’s a lack of understanding about the disease,” he said. “In fact, there are some who don’t even think it exists.”

CRPS/RSD is a chronic neuro-inflammatory disorder that affects an estimated quarter of a million Americans, although most think the number is higher. 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.

But first, it has to be correctly diagnosed.

Dr. Getson and Broatch are hoping the courses will educate physicians, psychologists, and nurses for the next three years about CRPS, and its often comorbid conditions

“Dr. Getson is passionate about treating CRPS and his lectures were jammed packed at the last Academy meeting,” Broatch said.

For Getson, it’s understandable why it is often underdiagnosed.

“Doctor don’t see a lot of it. And the way that medicine is practiced in the 21st century also hurts the effort,” he said. “We just don’t take enough time with the patient. We can do better.”

It’s about education.

Broatch has been pressing the medical community to better under CRPS. He went to the national meeting of emergency room physicians recently to educate them about CRPS. (Here’s the National Pain Report story on it)

Now this opportunity with the AAPM is designed to help others, like orthopedists, podiatrists and family physicians to learn more.

“We are strongly urging members of the CRPS community to share this educational opportunity with their treatment team and especially those health care professionals who are not very familiar with CRPS,” said Broatch.

For advocates like Gracie Gean Bagosy-Young, a patient having to educate a physician is a necessary task that can be frustrating.

“We get tired of going to our appointments loaded down with brochures and documents, prepared to teach each doctor we encounter.”

Dr. Getson’s message to the physicians is to slow down and listen to the patient.

“We’re in rush mode which is not what medicine is supposed to be,” he said. “I’ll remind them what we learned in medical school which is to make someone better of get them to someone what can get them better.”

Sounds like a good plan.

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Authored by: Ed Coghlan

There are 6 comments for this article
  1. Gracie Bagosy-Young at 8:09 am

    Hi Dave! Thank you for all of your efforts! I had no idea, particularly since you only identify yourself as “Dave.” No, my comment was not directed at you. I would have used your name if it had been. My comment was in appreciation of Jim and Dr. Getson’s efforts. It was also to inspire action.

    Hi Tamme- It isn’t so pretty on this “soapbox” right now. I have a ruptured disc and sciatica along with CRPS and Lyme Disease. Taking action doesn’t have to be big, such as the actions that Dave has taken. Advocacy and awareness can happen in very small steps. We can email Jim Broatch at RSDSA and he will send us a package of RSD/CRPS awareness materials for free. These are nice to hand out to friends, family, or just leave them in doctor’s offices. I like to silently hand them to people when they give me dirty looks for using my handicapped placard on sub-zero days. You can contact US Pain Foundation and they will send you informational material on chronic pain as well. I love their Patient’s Bill of Rights. I have had the chance to give that to a doctor that I was battling because he was being a complete jerk and treating me poorly. But that is another document that you can simply hand out, or leave it strategic places to “pay it forward” to help the next chronic pain patient. You don’t have to be loud or public to advocate and create awareness. Sometimes just having the courage and confidence to say NO when you are too exhausted is a huge step in advocating for yourself! That was a big lesson for me to learn. Honestly, I still struggle with it. #warriors

  2. Tamme at 9:14 pm

    It’s easy to get on your soapbox and say “what are you doing to make a difference?” Please. There are plenty of people out there that would love to be able to make a difference like you, but they cant. So happy you’re doing well though.

  3. Dave at 5:32 pm

    I trust MS Bagosy Young is not refering to my efforts to iprove pain care- as I have gotten 3 pieces of legislation in NYS requiring education in pain care along with 26 leislators sined on. And despite certain pain well-known pain specialists in NYS claiming they care about education in pain care- they didnt get a single one to in on to uch legislation. In addition some of the well known pain specialty pain organization alo were approached to support legilation in NYs on education in pain care-and failed to do so. Talk is cheap in the world of pain care- Ive wlaked the walk- and unlike pain specialits- i am under no obligation to try and improve pain care and am not compensated for such. In addition all of my state and federal repreentatives have signed onto legislation to improve pain care- 5 year in a row- what a coincidence. I dare say yhere are few districts in the U.S. where that is true.
    It is yours truly who has dared to talk about the four letter word in pain care- cures. And i have dared to call for lowering the prevalence of all painful conditions. The pain specialists have repeatedly stated they dont believe in cures- they lack ideals. Callig for education in pain care- is easy- doing something about it is more of a challenge-and getting government and expert to start the converation about cures and lowering the prevalence of pain care-that goes beyond the naive realism of the experts who created the NAtional Pain Strategy-and thoe pain advocacy organization that supported the NPS.
    Mr Broatch and Dr Getson should talk of preventing RSD, curing RD and lowering the prevalence- for as i frequency say- “To see without a vision is a terrible thing”. Education is all too little to address the needs of people with RSD. They should have energetic rights to curative an preventive treatment and they should demand the government require the health care industry to develop a plan to lower the prevalence of RSD substantially in the next 5 years- how do you like them apples.

  4. Gracie Bagosy-Young at 5:00 pm

    We, the pain patients, won’t give up. We won’t stop trying to educate our doctors. Sure, in a perfect world we wouldn’t have to do do that. Is there anyone reading this that thinks we live in a perfect world? I always advise other pain patients to find a doctor that is willing to learn and teach them. This offering is the perfect tool for exactly that! I have emailed this opportunity to many doctors. I have even sent it to doctors that are already familiar with CRPS. NO ONE knows it all-why not collaborate and learn from each other? I commend Jim Broatch at RSDSA and Dr. Getson for trying to make a difference. There are plenty of people sitting at home complaining. What are you doing to make a difference?

  5. DAve at 1:19 pm

    Dr Getson should know doctors prefer not to know about or deal with people in pain. They still try to miss that hour lecture in medical school-and the fact this article suggests RSD is a contested illness- all the more reason doctors don’t wish to be bothered with RSD. They are likely to refer them to the pain specialists or quickly and sloppily diagnose and treat them- or should I say misdiagnose and mistreat them.
    Broach and Getson, should realize that the problems with RSD and pain care involve more then an educational fix. I would ask both of them since when did any doctor say they could not afford education on conditions like RSD? When those large medical organizations met with Obama and agreed to have education on pain meds- where was the leadership in terms of calling for complete education in pain care. And after all-isn’t pain the main reason why people seek medical care. So what’s the problem. The problem is clear- moral and mental laziness on the part of the health care industry. And its inexcusable. Lets not excuse away the poor behavior that is the stuff that Zimbardo studies are made of. Lets not pawn it off to lack of education. Lets call it like it is- irresponsible and inhumane. Has it been so long since the FDA reported on Opioid REMS- and found that less then 20% of doctors received education on opioids? And they both know there is free education available on pain. So education, alone is likely to do all too little to change how doctors view and treat RSD.
    Doctors need to see things as they are and they are not pretty when it comes to how people with RSD and other painful conditions are all too often mistreated. As William James said healthy mindedness serves to blind us to the realities at hand. Those in the house of medicine who would call for reforms need to see clearly-however painful what they see may be.A pain persons bill of rights is needed to prevent health care providers from being conscientious objectors when it comes to treating people in pain properly-failing that others in medicine will defend thir ignorant and uncaring colleagues as just not knowing any better.

  6. Julie at 9:08 am

    As someone with CRPS, I applaud Dr. Getson and Jim Broatch from RSDSA for trying to educate the medical community about this disease. I can’t tell you how frustrating it is for us, the patients, to go to see a doctor and have them not understand or even try to understand what this disease is all about with it’s many complexities. I actually just left from one of those appointments feeling so frustrated that the doctor wasn’t even trying to understand or even willing to make an extra effort to try and understand how this disease works. It’s completely baffling to me the lack of knowledge but more importantly the skepticism which seems to come with this disease. I was one of the lucky ones. I was diagnosed after only 6 months of many doctor’s appointments. Funny to have to feel lucky for having to wait months to be diagnosed. Keep up the good work Dr. Getson and Mr. Broatch! We need all the help we can get.