Call to Action

Special Report: The Take Care of Maya Trial – CRPS, Ketamine, Parental Rights and the Battle Over $220 Million

October 30, 2023

Written by James Doulgeris for RSDSA

The following opinions are those of the author and not necessarily those of RSDSA, its management, board, or staff.

Take Care of Maya is a blockbuster Netflix documentary about a teenage girl named Maya Kowalski suffering from CRPS taken to Johns Hopkins All Children’s Hospital for treatment during a flare-up. Doctors there were unfamiliar with CRPS, accused the parents of child abuse, took Maya into protective custody eventually ending up with the mother, Beata Kowalski, committing suicide. After 87 days in the hospital’s custody, Maya was released back to her father six days after her mother’s suicide. If you want the details, watch the excellent documentary. Bring tissues. It is heartbreaking.

The father sued the doctors, winning millions and is now suing the Hospital in a blockbuster trial for $220 million and, according to the Hospital, CRPS, ketamine and now the lying, faking, manipulated by her conniving and mentally ill mother and greedy father, teenaged Maya are the ones on trial. The Hospital also claims that they must respond at trial because the case has created a nationwide “chill” on mandatory reporting of child abuse cases.

Let me explain:

There is an adage in trial law: if the facts are on your side, pound the facts. If the law is on your side, pound the law. If neither is on your side, pound the table.

But first, a disclosure. I have CRPS. It is all over my body. I have been independently diagnosed by four leading specialists. I am biased. This disease is no figment of anyone’s imagination.

With that out of the way, why are CRPS, ketamine and Maya herself the ones on trial? When the facts and law are not on your side, you put CRPS, ketamine and Maya on the table and pound them relentlessly and 220 million dollars hard. Why? Win or lose and regardless of the damage you cause, you are going to create a trail of doubt to protect your reputation and end the chill on reporting child abuse as the hospital has claimed as its noble motive.

So back to pounding the table.

CRPS on trial:

The Kowalski’s brought forth four world class experts in diagnosing CRPS, one of whom personally diagnosed Maya before the Johns Hopkins incident. I know three personally and they are fine people.

The Hospital cited numerous academic, scientific, and medical peer reviewed papers, studies and compilations validating CRPS.

The Kowalski’s cited CRPS’ official status as a rare disease recognized with its own ICD10 codes by the AMA and other official medical and governmental recognitions and validations and that the hospital actually billed under those codes.

The Hospital played video tapes showing Maya in positions that would be unlikely of someone with CRPS in the legs claiming her father and mother manipulated her to act like she had CRPS for their own gain.

Ketamine on trial:

The Kowalski’s cited numerous academic, scientific and medical peer reviewed papers, studies and compilations showing how daily dosages of ketamine works in the brain to ease the symptoms of CRPS and its two most common co-morbidities, depression and PTSD alone or as an opiate sparing drug, making opiates last longer and be more effective at lower doses.

The Kowalski’s showed how ketamine infusions slowed, stopped, or reversed the progression of CRPS, depression and PTSD for months or sometimes a year or more before a booster is required.

The Hospital presented expert witnesses claiming that ketamine is experimental and that there are no formal studies confirming its long-term safety or effectiveness implying that it is dangerous. They also presented other expert testimony claiming that positive ketamine results and purported theories about how it works are just that, claims and theories that remain unproven until clinical trials settle the matter definitively. They have done their best to cast doubt on the safety and efficacy of ketamine usage for CRPS.

Maya and her parents on trial:

The Hospital contends that Maya’s parents were abusive and mentally unfit, using her to feign CRPS symptoms to gain notoriety and money through donations for her care, and that they had a duty of care to separate her from them. The medical term is Munchausen’s by Proxy.

The Kowalski’s, including Maya, strongly disagree. The jury either does not know or has been directed to disregard that the Kowalskis were awarded millions of dollars from the doctor in charge of Maya, Sally Smith, and others working on her case after brief trials.

Please draw your own conclusions about CRPS and ketamine. The facts are available on the RSDSA website and by simple Google searches.

Regardless of how this trial ends, it should be about Maya, her family, and whether the hospital was responsible for what happened, not about the validity of a disease and its treatment. Laying carnage and sowing the seeds of doubt to rare medical conditions and their treatments that are already not well understood by the medical community to win a trial is an irresponsible, irredeemable tactic. It offsets the hospital’s ethical claim of protecting hospitals rights to ensure the safety of children everywhere by protecting their duty to report child abuse and to protect the children from abuse.

In the end, it comes down to money and a hospital doing whatever it can at whatever cost regardless of the damage it causes to avoid admitting it was wrong and making that wrong right.

James Doulgeris is a frequent contributor to RSDSA. He Chairs its Advocacy Committee while spearheading two major initiatives that promise to benefit all CRPS patients. He is a CRPS patient with Parkinson’s and other diseases, and passionate about helping his CRPS community.

Do You Suspect You or Your Child Has CRPS? Here is How to Self-Diagnose to Know if You Need to Seek Help

July 10, 2023

The Netflix documentary Take Care of Maya has raised awareness of, and many questions about, CRPS. First among them is, “Do I have it.” Here is how to self-diagnose the signs of CRPS and where to look for the right medical help.

Written by James Doulgeris

CRPS, or Complex Regional Pain Syndrome, is so painful it is also known as the suicide disease. It is rare, but as more pediatricians become aware of it, it may not be so rare in children as it has been rarely diagnosed. That’s important because treatment within a month or two of onset can avoid long-term disability and a lifetime of misery in many cases.

The story of Maya Kowalski in the Netflix documentary Take Care of Maya has set off alarm bells among adults and parents with unexplained, acute chronic pain. Her forced custody by Johns Hopkins All Children’s Hospital in St. Petersburg, Florida by Florida’s Child Welfare Services eventually resulted in false claims of abuse by her parents and her mother’s eventual suicide. While tragic, suicides connected with CRPS occur an estimated twice weekly.

How CRPS starts is usually a minor event. Here is one: Twelve-year-old Jorja suffered a seemingly minor fall during a PE class at school. She was diagnosed with a sprained ankle but despite undergoing physical therapy and wearing a cast for several weeks, Jorja’s pain and symptoms continued to worsen. Eventually, the pain spread to other parts of her body, including her hands and arms. She experienced constant pain, and her mobility was severely limited. Her doctors were stumped but her family did not have the resources to get her the specialized care she needed.

Jorja’s family struggled for months to gain access to a specialist who finally diagnosed her with CRPS. By then, the specialized care, support, and treatments that she needed were priced out of reach and came too late. Her disabilities will last a lifetime. Her family launched a fundraising campaign to help cover the costs of her treatment, and they became advocates for greater awareness and understanding of CRPS.

Jorja’s story is a reminder of the importance of early recognition and diagnosis of CRPS. Had she been diagnosed and received proper treatment within a few months of onset, her life may have turned out very differently.

Physicians are slowly becoming more aware of this condition that affects about 1 in 1,800 people, but, as parents, we know our children best. Furthermore, as more physicians become aware, especially children, more patients are being diagnosed. It could be that this rare disease is less rare than it is rarely diagnosed.

Here is what to look for, what to do, and where to find the right help in time to give your child and family the best chance to manage CRPS:

The Painful Facts

Complex Regional Pain Syndrome (CRPS), also known as Regional Sympathetic Dystrophy (RSD), is a chronic pain condition that affects one or more extremities, usually after an injury, surgery, or trauma. It may not have an identified cause at all. It can spread to affect the entire body.

It has no cure and gets worse over time. There are therapies that can slow its progression and in younger people, can even stop or reverse it into remission.

It is among the most painful conditions known to medicine and the most painful chronic condition known scoring a 42 out of 50 on the McGill Pain Scale.

Although CRPS is more commonly seen in adults, it is increasingly seen in children, typically girls ages 10 to 15 with a peak at age 12. Boys, however, get their fair share of cases and deserve their fair share of attention.

Treatment within the first two months of onset can make a lifetime of difference. And rare is a relative term. CRPS affects less than one in two thousand people.

Whether girls or boys and regardless of age, look for these telltale signs and symptoms:

If your child has pain that is getting worse, especially if it is more severe than one would expect from the original injury, trauma, or medical procedure, and that pain is:

– Described as deep, aching, cold, or burning, especially with increased skin sensitivity,
– Persistent and excessive and does not subside with healing,
– Moderate to severe caused by something that should not cause pain at all such as the touch of clothing, touching a room temperature metal or stone object, or taking a shower,
– In areas that should not be painful at all,
– Accompanied by abnormal swelling, sweating, skin color changes, hair and/or nail growth,
– Associated with abnormal skin temperature, that is, one side of the body, a foot, or a hand, warmer or colder than the other by more than 1°C or 2°F,
– Limited range of motion, weakness, or other motor disorders including paralysis or dystonia, which is involuntary, repetitive movement.

CRPS in children can be challenging to diagnose since children may not be able to describe their symptoms accurately. Therefore, a thorough evaluation by a pediatrician or a specialist in pain management is necessary.

Treatment for CRPS in children involves a multi-disciplinary approach, which will include pain management specialists and may include medication, physical therapy, occupational therapy, and psychological support. Every patient’s needs are different because their experience is different. Pain medications, such as drugs used to treat neuropathy and nerve pain, ketamine, non-steroidal anti-inflammatory drugs (NSAIDs) can help relieve pain and inflammation although stronger pain medications such as opiates in severe cases may be required. Non-invasive treatments such as mirror therapy and graded motor imagery have proven to be especially effective.

In severe cases, invasive treatments such as nerve blocks or spinal cord stimulation may be recommended. However, these treatments are typically reserved for cases that have not responded to other therapies.

It is essential to seek prompt medical attention if you suspect your child has CRPS or any chronic pain condition. Early diagnosis and treatment can help prevent long-term complications that can worsen over a lifetime and improve outcomes.

Because rare diseases are rare, they are not well understood, and researched nor do they have well-established treatment, drug, or therapy protocols, called best practices. That makes the healthcare provider landscape difficult to navigate. A trained physician may be miles away.

What to do when doctors dismiss your child’s symptoms or say they are at a loss?

Most doctors will see one or two CRPS cases in their lifetimes. If your doctors have not been able to diagnose the underlying cause of your child’s excessive pain, it can be a frustrating and challenging situation. Here are some steps you can take:

– Seek out a specialist in CRPS. They can perform a thorough evaluation and provide an accurate diagnosis. A pediatrician, neurologist, or pain management specialist may be a good starting point. Use Internet Search Engines, CRPS support groups and Pain Management Centers. Be tenacious and choose with care.
– Learn as much as you can about CRPS, its symptoms, and treatment options. This information can help you become a better advocate for your child’s care and treatment. An excellent resource for children with CRPS can be found on the RSDSA website by clicking here.
– Encourage your child to keep a diary of their symptoms, including when they occur, how long they last, and any triggers that seem to worsen the symptoms. Share this information with your child’s doctor.

– Take pictures of color, hair, or nail changes in the affected area, particularly when they are associated with spikes in pain.
– Keep a diary of signs of depression such as sudden mood changes, disinterest in hygiene, eating, or socialization. Get help if they worsen.
– Keep a healthy lifestyle and stay as active as possible: Encourage your child to adopt healthy lifestyle habits, such as getting regular exercise, eating a balanced, anti-inflammatory diet, and getting enough sleep. These habits can help improve overall health and reduce the impact of chronic pain.

Once you find the right medical team and effective treatment for your child’s chronic pain, keep an open mind to alternative therapies and emotional support in consultation with your doctor.

CRPS is a lifelong passenger.

CRPS is not going to go away, even if it goes into remission, so it’s important to remain diligent and to continue regular monitoring with your child’s physicians. CRPS is a complex and multifaceted condition, not only its diagnosis and treatment can be challenging but its changes over a lifetime can be as well. Remain very aware of your child’s emotional and mental well-being.

The chronic pain associated with the condition can and will be a significant source of stress and anxiety over time. Suicidal ideation (obsessive thinking about suicide) among CRPS patients is as much as 75 percent in some peer-reviewed studies. It is associated with severe depression and is a real-life problem in the CRPS community.

Overall, the key to managing CRPS in children is to stay informed about the condition and treatment options and provide ongoing support and care to help your child manage their symptoms and maintain their quality of life.

Lastly, as someone who has lived with CRPS for decades, have and be that family that never lets the patient be a victim. Life will be hard enough. Live it together.

For more information on CRPS, visit the RSDSA website, and please consider a donation to this important cause.

Jim is a healthcare professional and CRPS patient with whole body involvement. He chairs the Population Health Advisory Board for RSDSA and provides content about treatments and living with CRPS. Since medically retiring after 35 years in CEO roles in hospitals, medical device companies and value-based care providers, he stays active by advising healthcare companies and systems in the AI and analytics spaces. He also works to improve care and treatments for the rare disease community including the first initiative to use clinical and claims analytics to identify, diagnose and treat rare disease beginning with CRPS/RSD. As award winning novelists for “The Dyodyne Experiment,” Doulgeris is hard at work on its sequel, “Sentience.” He is also an active journalist writing articles and providing background and interviews on healthcare for national publications and news outlets.

CRPS Awareness Day 30: Awareness Must Become Our 365 Day Activity

November 30, 2017

By Jim Broatch, MSW, Executive Vice President, Director RSDSA

Executive Vice President and Director of RSDSA, Jim Broatch, details why it is crucial that we continue our CRPS awareness efforts beyond November. Awareness is a 365-day effort that we must push forward with in order to make positive change in the world of chronic pain.

First, a standing ovation for all who participated in the fourth Annual Color the World Orange (please visit their page by clicking here). It was an outstanding success and is growing exponentially each year. Billboards in Times Square, New York were just one of more than 100 locations in six countries that turned orange for Color The World Orange. Other locations included Niagara Falls and the Trafalgar Square Fountains in London. In addition, a record breaking 76 proclamations were granted in the US and Canada recognizing Color The World Orange and CRPS/RSD awareness. This is truly an astonishing accomplishment that could not have been made possible with people with CRPS and caregivers who proactively pursue opportunities to promote CRPS.

Hats off to RSDSA’s bloggers who shared their personal journeys each day this month. What an inspiration. I was also amazed at the many selfless individuals who asked family and friends to give to RSDSA in lieu of a birthday gift. We are immensely grateful to everyone who helped to increase awareness of our very little known, rare syndrome. These November events continued the momentum of years past and brought new hope and support for CRPS

My dream, my unceasing prayer is that someday, Complex Regional Pain Syndrome will become a household name, a name as easily recognizable as fever or measles. It is so disheartening to receive emails and phone calls from individuals with CRPS who have traveled to countless doctors searching for a diagnosis for their unrelenting pain that should have been diagnosed as CRPS by their medical providers. We must do better.

How do we begin?

We must continue to share our stories. One very effective suggestion is to approach your daily, weekly, regional newspaper and radio and television station and request to speak with the health editor or a reporter about CRPS, explaining that this is the most painful but least known chronic pain condition in the world. It has been my experience that once reporters become engaged, they are fascinated by CRPS. As a media resource, you can often remain anonymous or only share your first name if you prefer to maintain your privacy. At RSDSA, we can provide information about diagnosis, treatment, and emerging research. Ask your health care professional to help too. RSDSA volunteers and staff are always available for media interviews. We are always looking for writers as a part of our blog series, #TheTuesdayBurn. It is a great way to start sharing your story (email us your story at [email protected]). Through our partnership with The Mighty, we are also always looking for submissions there that will broaden our reach to those that may not know they are affected by CRPS yet.

Our print and broadcast media are consumed with the opioid epidemic with little mention of people suffering with chronic pain; yet one in three Americans is in chronic pain. It’s a national tragedy that those living with chronic pain conditions such as CRPS, are misunderstood, lumped together as potential “drug seekers” rather than people living with the highest-rated pain on the McGill pain scale and CRPS is often not recognized as a true medical condition in need of solutions rather labels. We must amplify our voices and specially call attention to CRPS.

Another way we are helping to create awareness of CRPS is with RSDSA’s two free accredited courses that we have developed for physicians, nurses, and psychologists. We can provide you with flyers about the courses to share with health care professionals in your community or just click here!

Education needs to include not only the health community but also our legislators. We must dissolve the myths and stigmas associated with chronic pain which is a real condition and the number one reason for doctor visits or to seek care in the Emergency Department.

We have also developed easy-to-understand educational brochures which can help you promote CRPS awareness among other professional or lay audiences, such as your employer, local library, religious institutions, etc.:

An excellent synopsis of treating CRPS with physical and occupational therapy

This brochure details the signs and symptoms of CRPS and presents some treatment options

This card describes CRPS from the point of view of a person with the syndrome and some suggestions on how others might help. Cards are free. We only ask for a small good-will donation to defray costs and to support our mission

Make other aware of CRPS by posting RSDSA’s car magnets and proudly wear our t-shirt that’s available in our online store, which you can visit by clicking here. These make thoughtful and inexpensive holiday and birthday gifts for you and loved ones who support CRPS.

I do not have all the answers, but together we can drive awareness, improve research, and help others struggling with CRPS. Please share with me your ideas on how we can promote greater awareness of CRPS. You may email me anytime at [email protected].

RSDSA: The People and Programs Behind the Website

October 24, 2017

By Jim Broatch, MSW, Executive Vice President, Director

With CRPS/RSD Awareness Month approaching, we wanted to feature a message from our Executive Vice President and Director, Jim Broatch. So many people rely on RSDSA for resources. Here at RSDSA, we want to be able to best help you and best support you. We want to create a hopeful environment. Every day, we look to see what we can do better for our community. Jim Broatch too the time to write up a bit of what we do daily. We will continue to move towards progress. Please join us in shedding more light on CRPS/RSD, not only in the month of November, but every month of the year.

I would like to introduce National Pain Report readers to the many programs and activities of the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). Too often, people are referred to our website or find us via a link during an exhaustive internet search. They see that our site houses a tremendous amount of helpful information but may lose sight of the fact that RSDSA is a vibrant organization which has been serving the CRPS community since 1984. Two moms with children with CRPS started our organization.

Our mission is to provide support, education, and hope to everyone affected by Complex Regional Pain Syndrome (CRPS), formerly known as Reflex Sympathetic Dystrophy (RSD) while we drive research to develop better treatment and a cure.

In terms of the first part of our mission, RSDSA has established two funds to support those with CRPS.

The Maria Lane Fund is designed to help individuals navigate the public/private insurance landscape and to promote greater professional awareness of CRPS. This fund also helps to sponsor the development of education programs for healthcare professionals in an effort to increase awareness of CRPS.
Our second fund is the Patient Assistance Fund in honor of Brad Jenkins. It provides emergency financial grants to individuals in distress. Since 2015, the fund has provided over forty thousand dollars in emergency financial aid. Sadly, at times, our fund is the only available source which keeps families from living on the street.
For the past three years, RSDSA has co-sponsored a free week-long camp for children in pain. One child remarked that the camp experience had literally saved her life. She had already tried suicide.
This summer, RSDSA also developed a young adult’s weekend retreat to help those aged 18-29 transition into higher education, the workforce, and or living on their own. Read about Melissa’s experience here.
Later this year, we will publish the third edition of an invaluable financial and social services directory called In Pain and Agonizing over the Bills.
Our staff and board of directors are always available to help individuals navigate this scary, perplexing diagnosis and begin their recovery journey. People can call us via our toll-free line 1-877-662-7737 or send an email, [email protected]. Whether you have had CRPS for decades or just months, we’re here to help and listen. One young adult just diagnosed, thanked us and wrote, “I have been completely overwhelmed and frustrated, but you gave me some hope and inspiration to research and fight to get better.”

Spreading awareness in the medical, legal and insurance fields, as well as to the community at large, is an integral part of our mission. Each year, RSDSA hosts regional educational conferences for people with CRPS and their care givers. Each conference is filmed and archived on RSDSA’s YouTube channel and we have also complied hundreds of peer-reviewed journal articles in our web library.

Philip Getson, a New Jersey physician who has treated hundreds with CRPS is featured in two free accredited courses for physicians, psychologists, and nurses
We also have developed a ketamine protocol for emergency departments on how to manage CRPS flares
A free accredited pediatric CRPS course for pediatricians, nurses, and physical therapists is currently being authored

The third leg of our mission is research. Since 1992, RSDSA has funded more $3 million dollars in pilot studies and pain fellowships. Three years ago, we established the International Research Consortium with the goal of fostering increased collaboration amongst CRPS researchers worldwide. Their mandate is to promote research directed at relieving the pain and disability of CRPS, facilitating its prevention, and ultimately, finding a cure. Read about RSDSA’s current-funded research.

RSDSA exists to serve your needs, no matter how you are affected by CRPS. We are here to help and are guided by the thoughts of Henri J.M. Nouwen, “Often we are not able to cure, but we are always able to care.” RSDSA is so much more than a website. It truly is a community of caring. We invite you to look beyond our website to see the people and programs which give it life.

Please consider making a donation to RSDSA today!

SPPAN Tracking State Issues- How Can We Help CRPS/RSD?

April 18, 2017

This blog was originally titled “How SPPAN Went From Tracking A Few State Issues A Year, To Monitoring 1,900- And Changing the Rules in Several States.” It was initially posted on Connectivity.

At RSDSA’s Nashville conference, pain-related legislation was a major hot topic. Some of the most frequently asked questions were about pain legislation and how to move towards change. RSDSA was offered this blog by CQ Roll Call to help explain a little bit of what SPPAN does and how one person can make a difference. How can this help people with CRPS/RSD? How can we move towards progress? The article starts below:

“Here’s how one organization (for whom policymaking is currently on fire in the states) moved from managing a handful of pieces of legislation at state level four years ago, to keeping on top of 1,400 different bills and 500 regulations, in all 50 states, D.C. and Puerto Rico. Without missing anything of importance.

And it’s all done by ONE policy director.

Katie Duensing is the assistant director for legislative and regulatory affairs at the Academy of Integrative Pain Management. Like many busy policy directors, a huge part of her job is juggling federal and state tracking for which she has CQ’s StateTrack to see what’s going on with her issue. But four years ago pain management, and patient access to it, wasn’t yet treated as a legislative and regulatory issue of top priority in the states. Then came awareness of the opioid crisis. Suddenly states all across the country were being confronted with huge spikes in prescription pain medication addictions and overdoses. Lawmakers needed to legislate fast regarding the prescribing and dispensing of opioid analgesic medications. But that led to a lot of knee jerk policy being written.

Need to watch what’s happening in the statehouses? Check out StateTrack

Enter the State Pain Policy Advocacy Network (SPPAN), set up just five short years ago as the policy department of the Academy of Integrative Pain Management, to tackle the policy barriers relating to optimal pain management.

The Academy of Integrative Pain Management has nearly 4,000 members that represent the various members of a “pain care team” necessary to provide effective integrative or multidisciplinary care. Half their members are physicians, but other disciplines include nurses, behavioral health specialists, physical therapists, pharmacists, acupuncturists, physician assistants, chiropractors, massage therapists, and more.

The Recent Shift in Action

‘I’ve been doing this for four years, and the first year it was just a handful of states dealing with pain management regulations and opioid prescribing,’ says Duensing. ‘Now it’s really every state on some level. It’s a constant deluge. There used to be a break in the summer, when the legislatures were out of session, but now that’s when the regulations start coming fast and furious, and the pain management rules are written.’

The Dilemma

The sheer numbers Duensing has to stay on top of are staggering: ‘I track all legislation and regulation related to pain management in all 50 states and in D.C., as well as federally. It’s intense to say the least. We don’t work on all of them in-depth, but we still track each one, and I go through them all to decide if it’s relevant or not. If it is, I categorize it in case we need to look it up quickly. We track by issue and by jurisdiction, and there are 13 different issue trackers we’re watching with StateTrack.’

How SPPAN Has Translated That Tracking Into Big Wins

In Florida last year the Board of Pharmacy was looking at redoing their dispensing guidelines for controlled substances in response to a big patient access issue. A couple of years previously, there had been a significant push in the state to shut down what are referred to as “pill mills”, the so-called clinics where patients could get prescriptions for large numbers of opioid analgesics without getting a proper evaluation. While the clinics were forcefully shuttered in Florida, the unintended consequence was that the scales tipped too far in the other direction, says Duensing. ‘Even patients that were getting legitimate prescriptions from legitimate practitioners, couldn’t get them filled. Pharmacists were so terrified of the backlash from all of the rules, and from the fear of the DEA looking at them very carefully, that they essentially said, ‘we’re not going to fill these prescriptions.’ So all these patients couldn’t get their medications. Even the media reported on it, which was a testament to the efforts of a coalition of patients and providers in the state highlighting these terrible disparities.’ Duensing picked up on the Florida prescribing-issue using StateTrack, and used it to get updates as the rules were amended. ‘The rules were published in proposed form three different times, so it was quite the process. But we were able to keep up to date, keep tracking the changes, keep putting in our comments and pulling together the necessary stakeholders,’ she says.

The states are a whopping 17 times more productive than Congress. How are you staying on top of state legislation? Check out StateTrack!

‘We wrote numerous letters to the Board of Pharmacy and had suggestions on how they could deal with the issue. But we also attended hearings and convened many interested stakeholders to really discuss the issues. We spoke with the DEA at length, the Florida Attorney General’s office, and really tried to work the issue from within. Florida can be a difficult state to crack if you’re not on the ground.’

The Result

For SPPAN and their stakeholders, their constant tracking and commenting meant the resolution was a clear win as they effectively ended up completely rewriting the Board of Pharmacy rules. ‘The new rules really enabled pharmacists to practice the way they wanted and should be practicing, to give patients their medications. That was a really huge win in Florida, with a lot of stakeholders who worked closely together. Luckily everyone saw that there was a problem and that doesn’t always happen,’ says Duensing. The icing on the cake came when Florida’s attorney general, known to be tough on crime, and who had been behind the push to get the pill mills shut down, came out and said the pendulum had swung too far in the opposite direction, and the issue of patient access needed to be addressed.

Spotting The Trend In Delaware

Thanks to those almost 2,000 pieces of legislation and regulations Duensing is keeping an eye on, she was also able to spot bothersome regulations in Delaware. In August 2015, the Delaware Control Substance Advisory Committee released the first draft of their rules related to safe prescribing of opioid analgesics. Duensing saw that bubble up from her StateTrack alerts. ‘The first draft was worrisome for us, and we submitted seven pages of comments in response, proposing alternate language and explaining why some language might not be correct,’ she says. While the final proposed regulation is expected any day now, SPPAN can mark things down as another solid win. ‘They ended up adopting a good amount of what we suggested verbatim, which was really very exciting,’ says Duensing. ‘I found this originally using StateTrack, tracked it all the way along, and have been alerted to each new proposed version. StateTrack has been very reliable through the whole proposed regulation, and we’re anxiously awaiting the final version any day now!’

How Having a Tool Makes Life Easier

Having a tool that tracks diligently state by state, means Duensing and her small team can stay on top of the multiple pieces of legislation that have spiraled relating to pain management throughout the states. ‘Because we’re a national organization, and the fact our field covers legislation and regulations that are both federally and state controlled, it would be almost impossible to do this without a tracking tool like CQ StateTrack. I certainly wouldn’t get the coverage or depth needed. Or the timeliness.’

Legislative Tracking – The Quiet Man On The Team

‘We used to be a three-person department, but the director of policy and advocacy became the executive director of the organization, so we like to call ourselves a two and one third department now,’ says Duensing. ‘I know some people that track manually, but they usually only target a few states, or for a very narrow issue. When I tell people how much I’m tracking, they’re blown away. The sheer amount is ridiculous.’ ‘I still track a lot more than what our top priorities are, because we do deal with other issues,’ Duensing says. ‘If I see a hearing has been scheduled for a bill having to do with pain rules, or a piece of legislation having to do with a prescription monitoring program, I’ll do a deeper analysis to see if it’s something we need to support or oppose. If so, I start writing letters.’

Advocacy With A Twist

Those letters sometimes take the form of giving the perspective of pain physicians, and show unintended consequences for patients, and how they might be resolved. ‘Other times we’ll reach out to our stakeholders and try to do sign-on letters. If you can get 70 organizations to sign onto a letter, you’re going to get much further. The way we depend on action getting done is by finding and disseminating legislative and regulatory updates to the SPPAN network organizations, and reaching the leaders of these organizations.’ SPPAN has a long list of network organizations, such as the Center for Lawful Access and Abuse Deterrence, the American Medical Association and American Cancer Society – bodies concerned, but not necessarily directly involved with pain management. ‘We try to be both a warehouse and a distributor of pain policy information, keeping stakeholders up to date on the most important issues that need action,’ she says. ‘In my opinion the most important aspect of my job is the letters I send out to policy makers because for us that’s where the rubber meets the road, and how they hear from us. A hugely important part of my and my colleagues’ jobs, jointly, is outreach to other organizations, because that’s also how things get done, too.’ While Duensing’s organization has been at the eye of a hurricane of policymaking for the past few years, it’s not showing any signs of letting up. ‘When I first started, our field was such a kind of niche one off to the side. No one really talked about it and getting any media attention was next to impossible. But in just a few short years, policies related to pain care have quadrupled! It’s a really intense time. I can’t even imagine not having a tool like StateTrack. It’s really vital to what I do.'”

CRPS/RSD warriors, be sure to find SPPAN online and follow their efforts. See how you can help make a difference for people living with chronic pain syndromes, such as CRPS/RSD. It is important to get involved!

The Importance of People – Friends with CRPS

January 24, 2017

By Samantha Barrett, Special Events Coordinator

I started my CRPS journey when I was a teenager. Of course, then, it was known as RSD, but a lot has changed over the years. I remember being diagnosed with “Reflex Sympathetic Dystrophy,” which instantly made me think that the doctor thought I was faking to get people’s sympathy. But, I soon found out it was so much more.

Doctors didn’t give me much hope. They actually told me I would never walk again. But, I’ve always been a determined little monster. I did everything in my power to battle the beast that is CRPS/RSD. Physical therapy, acupuncture, medications, desensitization, and anything that was in experimental phases that I possibly could. But, there was something that endlessly frustrated me. If there were other people out there with this, and people were allegedly getting diagnosed more frequently, why hadn’t I heard of it before? Why didn’t I know anyone with it?

That’s when I started to want to find others with it. The very first person I met with CRPS/RSD is a great friend of mine to this day. Jodi and I found each other ultimately by accident. I had a fundraiser and she was from a surrounding town. Her mom, the notorious S-U-E, brought her to my fundraiser and we got to connect. It blew my mind that someone that was close to my age (and lived near me) was going through everything I was going through. She went off to college while I was still in high school, so communication became limited to Facebook. But, I always knew if I needed to talk, she’d be there. Now that we’re both older, we get to chat a little more frequently. Our schedules don’t always align, but we cheer each other on and try to check in on each other. We’ve been through some incredible moments and some of the lowest moments of life together. We have inside jokes that no one would understand. We’re able to discuss anything and everything. Topics that could make other people uncomfortable we openly chat about, since we’re both still constantly learning about living with chronic pain syndromes among other things. Her friendship is not something I take for granted. She is truly a lifelong friend.

I had a Twitter account for my concert series. I was constantly meeting people through it. I would chat back and forth with people, and then realized there were a fair amount of people that were close to my age and living with this. One of these people was Emma. Emma lived in a town with the same name as mine, but over in Michigan. We laughed about traveling to the “other” town name to see each other. We eventually became texting buddies and got each other through a lot of life changing events. We called each other “twin,” because our stories and lives were so incredibly similar. I knew that I could text her to talk about the show “Total Divas” just like I could text her during a moment of anger/sadness because of pain or life. In “Total Divas,” the Bella Twins are the featured as some of the main cast members. Since we called each other twin anyway, she became Nikki Bella while I became Brie Bella. We had a bit of pseudo-twin telepathy. She would text me knowing something was wrong without me saying anything and vice versa. We were able to FaceTime a few times just to talk about live and how we hoped to meet each other one day. She was always a great friend to me. I don’t doubt for one second that she helped me get through some incredibly tough moments. We still haven’t been able to meet, but I’m optimistic about the future.

I have some other friends that I was able to virtually meet and then meet in person. Kerry, Ginger, Rachel, and Taylor are just a few. I’ll never forget meeting Kerry. We had always talked on Twitter, but then I heard her check in to the Achilles walk about 3 or 4 years ago. I turned around and felt like I was meeting a celebrity. I was so excited to finally meet this friend that I had been talking to online for so long. I met Ginger in person a year later at Achilles and instantly felt like I had known her forever. The three of us even united to do a live stream event, even though I FaceTimed into their Periscope session. We frequently discussed the three of us getting together, but schedules don’t always align. Rachel and I met through our CRPS/RSD Twitter accounts. We then became pen pals. We also always talked about meeting. I remember the day that I received a letter from Rachel with some very serious news about her health. I panicked for her and found her number so I could text her and try to be there for her in a way that was a little quicker than snail mail. She told me what she was about to endure, and we texted back and forth for the rest of the evening. I remember the first letter I received after her procedure. It had gone very well and she wasn’t experiencing the pain that she had been before. I was so happy for her. We also met at for the first time in person at an Achilles Walk. We didn’t get to chat much, but it was so nice to see her in person. She recently got married and I felt like I was living through her, I was so incredibly happy. And then there is Taylor. Taylor and I had been texting buddies because of things related to my work. I hadn’t known she was close to my age initially. Then, we found out we were going to meet and we were so excited. The day I met her, I felt like I met a long-lost sister. We ran (well, we hobbled) toward each other and gave the biggest bear hugs that we could tolerate. We talked, and talked, and talked some more. It was an instant connection. We text each other now when we can, since we live on opposite sides of the country, but I don’t doubt for a minute that the next time we see each other, it’ll be a lively reunion. Not only was she an instant friend, but instant family.

Now, what is the importance of all of this? People. People change people. Knowing even one person that can relate to or understand what you’re going through is so important. While none of us want other people to have to live with chronic pain, having another person that lives with CRPS/RSD that you know really can help validate what you’re going through. Once I met/started talking to other people living with CRPS/RSD, I felt much less alone. I felt like I had fellow soldiers in this battle with me. These people don’t judge, they help. It’s truly an overwhelmingly incredible feeling. Social media has become a great platform for this, especially with online support groups, but there is something about meeting people in person that makes it even more real. One friend can make a huge difference. That’s one thing I love about events- people get to meet and make these incredible friendships. The television “Girl Meets World” had the on-going lesson that people change people, and it’s so incredibly true. While I still have friends without CRPS that try to be understanding to my situation and are incredibly supportive, it is different to talk to someone that can truly understand what a text that says: “My body is on fire today, but I’m fine. How are you?” means.

I’m so excited that, for the first time, RSDSA will be helping young adults meet and interact. The first Young Adult Weekend will not only focus on forming these friendships, but will also help facilitate discussions about things that young adults are concerned about. It is going to be such an exciting time. This is the first time we’re doing something specifically for those people that aren’t children but are still getting used to the adult world. College, jobs, relationships, families, living independently, and anything else that runs through the minds of young adults is up for discussion. Plus, there will be some great activities to partake in. I am picturing people that have been virtual friends for years finally getting to meet in person and I already have goosebumps!

And then, of course, for teenagers and older, we’re bringing Treating the Whole Person: Optimizing Wellness to Nashville, TN. The reception the night before really allows people to get to mingle and make friends, while the conference is helpful with different tips and educational opportunities to try to help people with CRPS/RSD live their best lives. We even have a caregiver panel to help the amazing people that help take care of us day in and day out. We’re expecting this conference to completely sell out, and it’s doing so quickly, so do not hesitate in registering and booking your room!

If I mentioned you in this blog, thank you for being a friend. If you weren’t mentioned, it’s nothing personal. I’ve met so many incredible people that I had to cut part of my blog since I went well over 3000 words. To those of you that I haven’t met yet, I can’t wait to meet you. Connect with others! It’s more important than I can even explain. If you need a friend, you’ve got a friend in me.

New Year, New RSDSA Goals – Helping the CRPS Community

January 3, 2017

By Samantha Barrett, Special Events Coordinator

Welcome, 2017! So many of us were ready for a new year. With the new year comes expectations of resolutions, bettering oneself, and change overall. Not only is RSDSA no different than everyone else, but we also want to help people reach their goals/resolutions and then some!

As you may have seen in our emails, we have a set of initiatives for 2017 here at RSDSA. They include:

Co-sponsoring Camp for Courageous Kids- a camp for youngsters in pain for our third year
Continuing to transform lives with our “Treating the Whole Person Conferences,” the next one is scheduled for Nashville in April 2017, as well as utilizing our live-stream
Implementing our first statewide three-part Webinar for The Nursing Association of CT and the ARNP, Nurse Practitioners, whose pilot will be replicated nationally
Providing the CRPS community with cutting-edge scientific information readily available via our website and conference videos
Fostering self-advocacy with mentoring and peer-to-peer counseling
Updating a comprehensive resource compendium for individuals struggling to survive financially and to improve their quality of life
Continuing our college initiatives for students with CRPS, including publications geared specifically for them
Hosting a first-ever retreat for young adults, a pilot program which we plan to replicate nationally
Developing a reference protocol for professionals utilizing IV ketamine to treat intractable CRPS
Partnering with medical device manufacturers and pharmaceutical companies in their clinical trials
Offering complementary approaches to healing through our educational conferences
Facilitating support groups and raising awareness, promoting events across the country

So, how can you help this new year?

Follow us on social media to stay up to date with all things RSDSA. You can even share our updates with your social media friends and followers to help us spread the word. (Facebook, Twitter, Instagram, Pinterest, YouTube)
Donate to RSDSA and encourage the people you know to donate to help us work towards our initiatives
Attend RSDSA events- whether they are our educational conferences or our walks throughout the country, being at these events is so important. For many members of our community, it is the first time they meet others with CRPS/RSD. You can find out more about our events, such as our Nashville conference, on our website or on our social media pages. Some events are exclusively online, which makes it fantastic if you cannot make it out one day.
Adopt Penny Pig. Penny Pig helps us with our kids’ camp. This camp is for children living with various chronic pain syndromes, including CRPS/RSD. We co-sponsor this camp and have been lucky to do so for the past couple years. All you have to do is send us an email at [email protected] and we will send you a pig. We ask that you collect change and spare cash and send it in (via check or PayPal) and we will apply it towards the camp. You get to keep the pig.
Sign up to be a part of our 20-year study. This information is incredibly valuable to us and will help us learn even more about CRPS.
Hold a fundraiser. Contact Samantha, RSDSA’s Special Events Coordinator, to start planning your event. She will help lead you in the right direction. Whether you want to plan a walk, dance-a-thon, restaurant night, sales fundraiser, or anything else that you can dream up, we will do our best to help you!
Join or start a support group! Meet others with CRPS/RSD and become a part of each other’s support network. Information can be found on RSDSA’s website and by emailing [email protected]
Share the link to RSDSA’s accredited courses with your team of doctors and nurses. They will get credits that they need while learning more about CRPS/RSD.
Submit a blog for RSDSA’s hit blog series, #TheTuesdayBurn. Is there a topic that you’ve wanted to write about, but haven’t gotten a chance to do yet? This is your year! We ask that all potential guest bloggers send an email to [email protected] with their blog idea(s) and any sample of writing they’ve done in the past (if applicable). We will provide more information from there! You can also submit stories to The Mighty, whom we have partnered with over the past year. They link stories about CRPS/RSD back to RSDSA so people can find us as a resource!
Watch RSDSA’s YouTube videos and Livestream. YouTube features educational videos from past conferences while we Livestream conferences as they are happening. Our Livestream is very interactive and allows you to take part in the conference, even if the conference is in Tennessee and you live in Washington!
Donate extra medical equipment you have to our medical equipment exchange. Someone out there is looking for a wheelchair, a cane, a scooter, and even other things that you may have extra of. If you just upgraded to a different device, put the old ones to good use!

Do you have another idea on how the RSDSA community can help us reach our initiatives and can help make our 2017 a better year? Send us an email or comment on our posts! We’re always interested in hearing your ideas.

From all of us at RSDSA, we hope you have a great 2017 and we hope to see you out at one of our events!

Fighting Back: The War Against Chronic Pain Sufferers

December 11, 2015

By Suzanne Stewart, author of “Tears of Truth“

Think back to the Gun laws. Remember how some citizens were against taking guns away from the “people”? The reason being, that the “bad guys” will always have access to them and the “good guys” who are in need of protection; get killed in the meantime because their safety net, their weapons to fight against being robbed were taken away from them! Well, my friends, the same thing is happening now, this 2016; to “real pain patients” fighting against being “robbed” of their “safety net, their weapons” to fight against the chronic intractable pain, and nerve pain that “WE” live with day in and day out. Yes, I am one of those people suffering and trying to be a “pain warrior”. While I am fighting yet another battle to live maybe not “pain free”; but possibly with less pain and more living!

We are fighting a war against being robbed of the very weapons we need to fight. I have complex regional pain syndrome (CRPS) and I’m fighting to live not “pain free,” but with less pain and more living. Those in positions to help, need to take the time to do so. All 50 states now have proclamations that explain the burning, fire-like pain of CRPS. They discuss allodynia, or extreme sensitivity to touch, and the pain it brings.

But all of this means nothing if the government, FDA,CDC, physicians, and pharmacies take away the means of lessening our pain. We follow the rules, sign contracts with our pain doctors, and jump through hoops to get what we need to try and live some kind of life.

On the other side of the spectrum are those who don’t follow rules and who break laws. But they have a different disease called addiction and they ruin it for all of us. Only about 5% of opioid prescribed patients are addicted, yet they are making us all feel like criminals.

Would these same agencies and officials take glasses away from people who’s eyesight is not good? Would they take a white cane from the blind woman who needs that cane to make sure she is seen so that she won’t get hit by a car? Would they take anti-depressants from the hopeless, or Insulin from a Diabetic? Is this what is going to start happening? Are they going to also make the Deaf or the Blind feel “guilty” for using other methods of reading or “speaking”, by limiting braille or American Sign Language? Are we going back to the days of “tying the hands of the Deaf behind their backs” so they would be forced to learn to speak a language that they are unable to hear

But this year in 2016, it is going to continue to get worse unless we rally around and try to do something about this travesty! This year the new prescribing guidelines are getting more horrible. The Physicians who were once very good and capable at what they did and cared about people living with real and horrible chronic pain day in and day out; these same Dr’s are cowering and refusing to give medicine for pain where it is truly needed. Yet…once again…as I’ve said above; those who want it, and who are true “addicts” will be able to find a way to get what they need! While law abiding citizens, suffering daily, have no other means than trying to advocate for ourselves and continue to try and do what we can do…. in a calm, legal and respectful manner. We are not “addicts”! We are people who are suffering with a horrific daily pain and who are “dependent” upon a pill, a patch, a spray or a lozenges; to get through our daily routines. Some of those “routines” involve mostly sitting in a “Lazy Boy chair” for many hours per day, trying to be as free from pain as possible because moving too much means more pain later! It is so sad when taking a shower is so painful, that it is very draining and the rest of the day is pretty much left to doing not much of anything else after taking care of basic needs.

It is despicable that some pain doctors are being forced to push invasive surgeries on more patients. Physicians who pledged to “do no harm” will do surgery, instead of prescribing the medicine so desperately needed for the real chronic pain population.

There are new controversial prescribing guidelines coming and some already in effect. These are leading to more and more restrictions put upon our primary care physicians and even tying the hands of our pain management doctors. The CDC, FDA, and other groups think that they know more about pain and pain management, but when have they ever studied such things?

They are making a fake war on prescription drugs, when it’s really some kind of smokescreen for saving money!

Well, I say “Pick on the real criminals”, not the “weak or the ill chronic pain sufferers”! I feel afraid and “bullied”, even though I’ve not experienced most of this yet. I pray that I never do. I have experienced enough issues with my Dr. of 12 years leaving me and his entire practice after having written several too many pain prescriptions and padding his own pockets! But what he did was still not my fault! I did nothing wrong! I am a lay person who did what my Dr. told me to do to alleviate my CRPS pain, Chiari I pain and the pain of multiple herniated/bulging discs, RA and OA etc. I never wanted to take any of these meds. I never smoked, drank or took any drugs; not ever! I was just naive enough to think that I could finally trust someone in this life and then the rug was pulled out from under me. (you can read about this in my prior blog posts). I had this happen to me this past year and when I tried to go and see the pain Dr. who originally saw me for several years following the car accident, he said that he “didn’t want any part of that other medical office’s mess”. I guess that was referring to me as a “mess” that he didn’t want to deal with! How rude and inconsiderate of him! I am a real person with feelings and so much pain, that some days I don’t know how I will make it through.

I’ve read that they are taking most pain medications away from anyone with non-malignant pain. Who are these non-medical personnel, these agencies, to say that malignant cancer pain is worse than non-malignant pain? Unless they’ve experienced either, how would they know? CRPS is #43 on the McGill pain index, right next to childbirth or amputation of a finger.

The agencies are trying to also push exercise and healthy eating habits, along with PT and “behavioral therapy” as an alternative to “pills” to help pain. They are saying that the goal in all of this is to stop the overdoses and the prescription drug abuse. Well, I say to that and to them: “A person can only take the medication given to them by their Dr. and if the Dr. is a good one, he or she will only prescribe the amount needed. Then why take it away if the patient is doing everything right ? If I am doing what I am told and only taking what I am allowed to take, then why take it away from me when it gives me some kind of a little bit of so called “life”? There are only bad Dr’s and bad people who are hurting the rest of us. The innocents should not suffer because of the crimes of a few! The “addiction specialists” scream “HYPERALGESIA” to everyone on opioids for any length of time. They say the pain meds stop working and that we all get addicted! We are all individuals whose bodies may become physically dependent, but that’s very different from addiction. If it is working, then how can it be hyperalgesia? In all honesty, if the doctor is a good one, he or she will only prescribe the amount needed. Why take it away if the patient and doctor are doing everything right and when it gives some relief? The innocents should not suffer for the crimes of a few.

Many patient advocate groups have written to the CDC and the FDA and explained that they are not being transparent. They used biased teams of people to make up these new “rules” and guidelines. They didn’t listen to the voices of the Dr’s and people who live in the “Pain world”. They also found that many of the people who put these new rules together have a monetary gain in such matters! The government and these agencies are practicing inhumane treatment towards real and true pain patients. They allowed insurance agencies and others who would gain from these guidelines to make decisions for us.

One physician wrote in the Pain News Network that he has had patients on high doses of opioids for over 20 years and they have led quality lives. He also agrees that taking these meds from patients who’ve been on long term dosages is cruel and inhumane.

Sometimes people who want to change things to save a few dollars or get their products pushed, such as spinal cord stimulators and pain pumps, are not thinking of patients like me, who do not fit inside a nice neat box. My issues are different. I need these pain meds to survive.

So many lives have been lost because pain was not managed well! Chronic pain can kill you because it causes so many other issues and there’s a snowball effect when pain is not controlled.

Please use your voice and be heard! Help yourselves, help your sisters, mothers, fathers and brothers. Please lets everyone who’s suffering with long term chronic horrible debilitating pain, take a stand and rally around one another. We need to form advocacy groups that will work together for the common good! Not “my group” and “your group” but we need an “our group” that will help us and speak up for us and with us and take a stand against all of the knuckleheads who just want to make a profit and don’t care if we live a fuller or lesser life. They don’t even care if we actually live or die because if we are no longer a “productive member of society” in the eyes of our government, CDC, FDA and the others, then we will not be heard nor will get the help that we deserve. Please write to your State representatives, and to our Federal agencies, House of representatives…anyone who will hear us and not just let it be words to the wind! Please let us stick together and not allow ourselves to be treated so hurtfully and inhumanely for no common good whatsoever. But only for the lies!