Current and Future RSDSA Initiatives on Behalf of the RSDSA Community

Written by Jim Broatch, RSDSA’s Executive Vice President, Director

This month, RSDSA is partnering with The Coalition Against Pediatric Pain and The US Pain Foundation to co-sponsor a free camp for children living in chronic pain: THE CENTER FOR COURAGEOUS KIDS in Scottsville, Kentucky. The camp is July 14-17, 2015 for children ages 7-17. The goals of the summer camp are FUN, FUN, & FUN! It is the first time we have ever found a camp for children living in pain. The camp is totally FREE for all participants and a parent/guardian who will stay at the camp with his/her child. Please go to tcapp.org and fill out an application today!!! Space is still available. Act now before it is too late!

The recent June conference in Denver was an outstanding success. Our attendance topped 110 individuals and caregivers. One couple drove 14 hours from Arkansas to become more educated about current treatment options. Another traveled from Massachusetts! We are currently editing the presentations for viewing on our YouTube channel. We have uploaded 78 videos with more to come! Plans are underway to host the Integrated Solutions to CRPS in Cherry Hill, New Jersey on September 11, 2015 and in Orange, California on February 27, 2016. If you have any questions, please email Samantha Barrett at [email protected].

Bob Lane, a member of RSDSA’s Board of Directors has pioneered the development of a 1-credit hour CEU for nurses on Complex Regional Pain Syndrome (CRPS): Causes, Diagnosis and Treatment. If you are interested in teaching the course in your area, or want to see where a course may be coming next, please contact Bob Lane at [email protected].

RSDSA is also tackling the thorny issue on how individuals with CRPS are treated by Emergency Department (ED) staff when they go to obtain pain relief for an unbearable pain flare. The answer may be IV Ketamine. ED staff are very familiar with Ketamine, but not as a rescue agent for breakthrough neuropathic pain.  We are exhibiting at the American College of Emergency Physicians in October to “broach” this intervention.

In the CRPS research arena, RSDSA via its International Research Consortium (IRC) has recruited over 35 established and productive CRPS clinics around the world to join the IRC. The IRC wants to encourage multi-center clinical trials of novel therapies. Just planting a seed of hope!

The RSDSA Board of Directors in May approved a pilot genetic study of CRPS. This project will address a fundamental question regarding CRPS: Why do some individuals develop CRPS and others do not despite experiencing similar injuries?  Specifically, this project will examine whether individuals who develop CRPS differ from those who do not in terms of a wide array of genetic differences (in DNA), differences in how genes are expressed, differences in the proteins that make up the body, and differences in how chemicals are metabolized by the body.

This project will examine a vast amount of highly detailed genetic, protein-related, and metabolism-related information collected as part of a previously completed Department of Defense research study of 116 military veterans experiencing pain following traumatic injuries that required limb amputation.  This information has never previously been examined.  Study patients have been categorized as having CRPS, non-CRPS residual limb pain, or no limb pain.  The study will examine whether development of CRPS rather than non-CRPS limb pain (or no pain) after amputation is linked to genetic differences in broad regions of the DNA sequence never previously explored in terms of CRPS risk.

It will also examine whether CRPS risk is related to differences in how a broad array of genes are expressed, as well as differences in proteins or metabolism. The study will additionally test whether severity of CRPS symptoms is associated with these genetic or other factors. This project will provide highly detailed information on a range of potential risk factors for developing CRPS that have never previously been examined.  Results may help provide new directions for future research seeking to understand the mechanisms of CRPS and potentially suggest new possibilities for treatment of CRPS.

It is a very exciting and hopeful time for RSDSA and the CRPS community. Stay tuned! Don’t forget to follow us on all of our social media platforms for live updates:

Twitter: @rsdsa

Facebook: facebook.com/rsdsa

Instagram: @rsdsa_official

YouTube: youtube.com/user/RSDSAofAmerica

Biofeedback for CRPS: Why Haven’t I Tried That?

Written by Kenneth R. Lofland, PhD

CRPS is a painful disorder that continues to challenge the medical community. The cause, course, treatment, and outcomes are highly variable and remain a source of vigorous debate among the brightest professionals specializing in chronic pain.

Biofeedback is a non-drug intervention that is used to treat patients with a variety of medical conditions. Taken simply, biofeedback can be defined by breaking down the word as “bio,” referring to the body, and “feedback,” receiving information about the body, that one would ordinarily not be aware of. A simple example of how biofeedback can work is the case of a patient with poor circulation to the extremities, often referred to as Raynaud’s disease. When this disorder is severe, coldness, pain, and poor healing results in the extremities due to decreased blood flow. It can increase the risk of frostbite and minor cuts to fingers or toes becoming infected, not healing properly, and even requiring amputation. Improving blood flow to the extremities through thermal biofeedback is one of the most effective treatments for this condition.

How does biofeedback work?
Although it sounds amazing that anyone can learn to alter blood flow, it is actually quite easy to learn. We all have a “flight or flight response.” If I am to give a presentation in front of 500 people, I will notice my hands get cold and clammy. When physical or psychological stress occurs, our bodies instantly secrete adrenaline, our breathing rate changes, our blood pressure increases, our heart rate increases, and our blood flows away from the periphery toward the core of our body, thus the cold, clammy hands. When the stressor is over, our bodies relax and these physiological responses reverse. Learning deep relaxation techniques, in combination with receiving feedback from machines measuring small changes in temperature, can advance this process and allow the blood vessels to dilate (open up) even more, allowing more blood to flow out to the periphery. So in the case of the Raynaud’s sufferer, learning deep relaxation techniques and biofeedback allows for increased blood flow to his or her hands. This improved circulation increases hand temperature to normal levels, decreases pain, and improves the body’s ability to heal any cuts or injuries naturally.

How can biofeedback help my CRPS?

Changes in blood flow often accompany CRPS. Learning deep relaxation techniques can be paired with a biofeedback device which measures skin temperature in order to help a CRPS sufferer learn to relax deeply, increase blood flow to a part of the body with a restriction in blood flow, increase the temperature of that part of the body, and decrease the pain.

What does the science say?
Biofeedback has not been subjected to the same level of scientific scrutiny as many medications. More, larger scale, and better controlled research studies are needed in this area, as is funding to support this type of research. Several studies have been done evaluating biofeedback for pain and found positive effects. For example, Grunert et al (1990), found that 20 patients with documented CRPS for 18 to 60 months and who failed to respond to a variety of treatments underwent thermal biofeedback with relaxation training as a part of counseling treatment. The results found that patients were able to significantly increase their blood flow and significantly decrease their pain levels (p<.0001). This pain reduction was maintained at 1-year follow-up assessment and 14 of the 20 patients had returned to work. The conclusion was that this intervention was effective to reduce pain in CRPS/RSD for the long term, even in patients who had failed prior treatments. Multiple other case studies exist but I reiterate that additional well-controlled treatment outcome studies are needed with larger sample sizes.

As a clinician I am very enthusiastic about the use of thermal biofeedback for the treatment of CRPS. Specific sources for this enthusiasm include:

1. The number of case reports indicating successful outcomes, even in cases where other treatments have not helped the CRPS patient (see above)

2. The common sense aspect that at least one hallmark symptom of CRPS, namely decreased blood flow and temperature in the affected area of the body, can be reversed with thermal biofeedback

3. My own clinical experiences, which have demonstrated positive results using thermal biofeedback with CRPS sufferers

4. It is one of the few treatments in medicine that has essentially no known negative side effects. There are very few other treatments available to chronic pain sufferers with no negative side effects.

How do I find a biofeedback provider?

First, some caution must be taken when identifying a biofeedback provider. While being a licensed clinical psychologist requires a specific doctoral degree and a license, and being a licensed physician requires a specific medical degree and a license, being a biofeedback therapist does not require a specific degree or license. Therefore, practitioners at much different levels of training and experience may be presenting themselves as biofeedback therapists. It is always best to ask a prospective provider to tell you about his or her training in general, specific training in biofeedback, and what conditions he or she specializes in when treating with biofeedback. Knowing the individual’s level of training, specialization, office practices, etc., can make you a more informed client.

Several states have biofeedback societies with web sites, such as the one in Illinois www.biofeedbacksocietyil.org. These sites generally have a list of practitioners that are members of the state biofeedback society. Membership in these organizations does not indicate any level of training or expertise. However, health care professionals with an interest in biofeedback can be found there.

Also, a national organization exists, the Biofeedback Certification Institute of America (BCIA) that certifies some individuals who chose to learn biofeedback through this particular organization. Being a member of this organization does indicate a certain basic level of biofeedback training, but it does not guarantee the degree to which a provider has specialized or the amount of experience a provider has had. Further, not being certified by this organization does not indicate a lack of training or experience of those who may have gotten trained via other routes, such as in graduate school.

1. Grunert, BK, Devine, CA, Sanger, JR, Matloub, HS, Green, D. (1990). Thermal self-regulation for pain control in reflex sympathetic dystrophy syndrome. Journal of Hand Surgery. 1990; July 15(4): 615-618.

Dr. Lofland is the Director of Pain Studies and the Director of Psychological Services at the Pain and Rehabilitation Clinic of Chicago. He is past President of the Biofeedback Society of Illinois and the current President of the Midwest Pain Society. He is both a dedicated clinician, treating individuals with pain syndromes such as CRPS, and an active scientist, researching the most effective treatments for many chronic pain syndromes. He can be reached for follow-up questions at [email protected].

The Cynthia Penaskovic Memorial Fund

Cynthia Penaskovic Memorial Fund picture of Cynthia. CRPS/RSD

Pain is a more terrible lord of mankind than even death himself. – Albert Schweitzer.

Too often, life changes on a dime as my pastor frequently tells our congregation. Just ask any person suffering with CRPS when they developed CRPS/RSD and they can immediately relate the date and time. So it was with Cynthia Penaskovic, a vibrant naval pediatric flight nurse who developed CRPS/RSDS 25-years ago after a car accident in southern California. Her doctors at Scripps Torrey Pines in San Diego called it “one of the worse cases of widespread RSDS they had even seen.”

Joan Penaskovic, Cynthia’s sister spoke of her subsequent “solitary life spent creating exquisite beaded art which she often donated, until she could no longer hold the threads. She was blessed with extraordinary grace and courage, providing loving support for her widowed mom, family and friends, when she was the one in dire need.”  Sadly, Cynthia lost her 23-year-old battle with CRPS in November 2013.

Joan Penaskovic and Veronica Meyers, Cynthia’s mother wrote to RSDSA to inquire about establishing a Cynthia Penaskovic Memorial Fund. Cynthia envisioned a fund that would “serve as a lightning rod for CRPS/CRPS Research Only so that “no one would ever suffer the way I did.’  The RSDSA Board of Directors unanimously accepted a very generous donation to establish The Cynthia Penaskovic Memorial Fund. It was stipulated that the funds would be donated to promising laboratories and scientists through fellowships and grants targeting research for a cure.

Serendipitously their gift arrived at the right time. RSDSA has recently established an International Research Consortium with the goal of linking laboratories worldwide to foster greater collaboration amongst scientists researching CRPS; thus producing more robust studies leading to better treatments and hopefully a cure.

Joan Penaskovic asked us to encourage the CRPS community to join in this effort. Her simple plea is, “Do not let Cynthia’s suffering be in vain. It was her last wish to help drive funding for Research Cynthia Penaskovic Memorial Fund picture of Cynthia. CRPS/RSDand with your help we can cure RSDS/CRPS. Donate now.”

  1. Everett Koop, former Surgeon General of the United States cautioned us that the treatments of today cannot be the treatments of tomorrow.” Consider that the National Institutes of Health only invests less than one percent of research dollars into pain research. It is up to us.

To donate to The Cynthia Penaskovic Memorial Fund, visit https://rsds.org/donate/ and give generously in Cynthia’s memory (make sure that you write in memory of Cynthia in the box on PayPal’s second page) or in the memo line of your check.  Thank you for your generosity.

New U.S. Clinical Trial of Neridronate

In the last fifteen years, only two randomized, placebo-controlled trials for CRPS have been conducted in the United States. Sadly, both were unsuccessful.

Our optimism is rising, however, with the U.S. Food and Drug Administration’s declaration in 2014 that Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), is officially a rare disease. The designation is a strong catalyst for new drug development. Developers qualify for clinical trial tax incentives, may sell the drug without competition for seven years, and may enroll fewer patients in a trial (as recruiting is more difficult in small populations).

Four pharmaceutical companies are now considering clinical trials for CRPS in the United States.

The first out of the gates is Grunenthal, a Germany-based, family-owned company. The trial medication is neridronate, an amino-bisphosphonate. Attention mounted for neridronate after a startlingly successful small trial in Italy, which was was published in the journal Rheumatology at the turn of 2013. The Italian trial’s inclusion criteria were strict; individuals whose CRPS onset was greater than four months were excluded. The American trial inclusion criteria are not as strict, with the exception that individuals with CRPS Type 2 are excluded. (The diagnosis of CRPS Type 2 is made when specific nerve damage can be detected, whereas for Type 1 such damage is not evident.

Grunenthals’ recruitment for the neridronate trial started in early April 2015.

The bisphosphonate class of drugs has been used overseas to treat CRPS for years. Querying PubMed for bisphosphonates for CPRS will reveal a small trove of published research (more than 20 papers) dating back to 2002. (PubMed is a great website to bookmark to search the latest scientific research. Again, this search engine indexes published research, which may not prove fully accurate after deeper scientific investigation.)

Currently, two other pharmaceutical corporations are submitting plans to the FDA for clinical trials that will evaluate therapies for a CRPS indication. It’s an exciting time for all individuals affected by CRPS. Stay tuned!