Year End: The State of CRPS

Year End: The State of CRPS

By Ed Coghlan.

Jim Broatch is the long-time Executive Director of the RSDA—a non-profit that works to raise awareness and improve treatment of CRPS. It’s been an eventful year—and we wanted to get his perspective of where we’ve been and where we are going in the treatment of CRPS.

National Pain Report: “Jim, how would you characterize the progress that has been made in the diagnosis and treatment of CRPS?”

Jim Broatch: “First, Ed, I want to thank you for publishing the National Pain Report. You are providing a vital service for people suffering in pain.”

“It appears that more physicians are familiar with pediatric and adult CRPS. However, we still hear the horror stories of individuals who have spent years searching for a diagnosis and have finally learned of RSDSA’s existence.  Sadly, treatment of chronic pain conditions such as CRPS is still fragmented.  Too often, individuals may receive medication or a nerve block but are not referred for the necessary physical and occupational therapy designed to help restore functioning or to learn valuable techniques for managing their pain.  Too many treatments which may help are deemed “experimental” and not paid by insurers.  Although opioid therapy is not a first-line intervention for people with CRPS, too many individuals stabilized on long-time opioid therapy have been abandoned by their physicians because of the CDC Guidelines and state laws.  We must continue to fight that battle. I’m optimistic that within a few years, there will be new bisphosphonate therapies.  Currently, there are two ongoing clinical trials.    More physicians and pain specialists are utilizing low-dose naltrexone and ketamine to treat CRPS.  Hopefully, the National Pain Strategy will eventually be implemented.”

National Pain Report: “Has your work with the Emergency Room community resulted in more awareness of CRPS?”

Jim Broatch: “The results have been mixed. Some Emergency Departments have been receptive to managing neuropathic pain/CRPS flares with ketamine as suggested by Dr. Ducharme,

“One of RSDSA’s board members, Dr. Billy Alexander, a former ED doc is helping us intervene directly on behalf of individuals with CRPS who have received abusive treatment in the emergency department.   We are also developing a protocol for first responders on how to care for people with CRPS.”

National Pain Report: “Where are we w/ the use of Ketamine to treat CRPS?”

Jim Broatch: “Ketamine is increasingly being used to treat CRPS and some individuals have been successful in getting it paid for by insurers. Most are unsuccessful.   In 2015, RSDSA conducted a survey of more than 350 medical professionals on their usage of ketamine for the treatment of the pain associated with CRPS. Respondents answered questions about in-patient treatment, out-patient treatment, children versus adults, safety, and basic demographic information.”

“Subsequently, an expert group met to reach a consensus for the development of inpatient and outpatient reference protocols.”

“The reference protocols do not represent guidelines for ketamine infusion for CRPS; rather they are a reference/orientation by which practitioners can access the consensus of highly experienced practitioners. Importantly, this consensus can provide a starting point for statistical validation to formal guidelines and a more uniform approach to research protocols that will validate the safety and efficacy of ketamine through controlled clinical trials.  The survey and reference protocols are due to published in Pain Medicine.”

National Pain Report: “If we do this interview again a year from now (which I hope we will) –what do you hope the highlights of the year will be for people who have CRPS?”

Jim Broatch: “RSDSA is developing an accredited course with Dr. Elliot Krane at Stanford for school nurses and pediatricians on how to diagnose and treat pediatric CRPS. We are currently working on a marketing plan to maximize its availability.”

“We are exploring the development of an externship program with selected expert CRPS clinicians and an interdisciplinary treatment facility in California.  We must ensure that more clinicians are trained to treat CRPS.”

“We are committed to fund more clinical research in CRPS.  The treatments available today cannot be those of tomorrow.”

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Authored by: Ed Coghlan

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6 Comments on "Year End: The State of CRPS"

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HAS anyone noticed a link between TMJ and CRPS? Treating the TMJ can help to treat/ alleviate symptoms, and in my daughters case, help put RSD into remission.

Research continues for CRPS and other types of neuropathies using Calmare therapy. There are some positive results clinically. While studies at well known Hospitals are being published regarding a variety of neuropathies. We are hoping this non invasive treatment will continue to be studied and be a treatment that eliminates the need for the more invasive procedures.

I have been sexually assaulted and assaulted with wounding for life by A&E ie ER Nurses. They did not say but clearly thought I was an addict despite my legal paperwork. They have got the police to lie to cover for their criminality. Fortunately hosp intetviewed their pharmacist about this and he said any of 5 pathways should have been checked all things I had asked them to do and they refused to. I have a witness with a Law Degree from Cambridge, My lawyers are after these criminal Nurses. You at right ER abuse must stop untreated and under treated pain is a metabolic emergency The cortisol released kills brain cells and damages organs plus makes pain levels worse.

I am a 21 year warrior fighting the beast (CRPS) and now many other mixed connective tissue disorders which in turn have developed other issues (full body). I was excited to hear about the Emergency Department studies. Too often it was after hours or weekends and treated as a drug addict as opposed to a human being needing help to be turned away with sorry we can’t help. I just stopped going and suffered in silence. I am also excited to hear that y’all are looking for other treatment options. Too often we are turned to surgery to implant this devise or that one. These surgeries too often turn to additional CRPS development or complications to surgery. I applaud y’all for your direction. May 2018 be a great year for RSDA. We are Warriors!!

This all so well said! Too bad you couldn’t get an appointment time with the President/Trump.

Unfortunately, I’m allergic to ketamine. Approx 3 weeks ago,
Jane Pauley, on “60 Minutes”, had a segment on CRPS.
In the 24 yrs. that I’ve had this, it was the first time I’ve
heard it mentioned on any news/magazine channel.
Kudos to them! I truly believe that those of us, who experience this form of constant torture, need to be more
vocal to the medical community and the public, in general.