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Category: Guest Blogger for RSDSA

Centers For Disease Control And Prevention CDC Guidelines For Long Term Opiate Use

Prepared for RSDSA by James Doulgeris – for more information or with questions, contact him directly at [email protected]

The restrictive guidelines for opiate prescribing of the past have been relaxed substantially, leaving decision making to physicians and their patients. Here are the details:

The new guidelines for prescribing opioids, as outlined by the Centers for Disease Control and Prevention (CDC), have evolved to address the opioid crisis while ensuring appropriate pain management. These guidelines were updated in 2022 and focus on several key areas:

  • Determining the Need for Opioids: Healthcare providers should carefully evaluate the necessity of opioids for pain management. Non-opioid alternatives should be considered first, especially for conditions like chronic pain [2].
  • Patient Assessment: Before prescribing opioids, healthcare professionals should assess the patient’s medical history, risk factors for addiction, and pain intensity. They should discuss the risks and benefits with the patient and establish treatment goals [1].
  • Prescribing Opioids Responsibly: When opioids are deemed necessary, providers should start with the lowest effective dose for the shortest duration, particularly for acute pain. For chronic pain, they should use a gradual titration approach and regularly reassess the patient’s progress.
  • Monitoring and Follow-Up: Ongoing monitoring is essential, with regular follow-ups to evaluate the patient’s response to opioids, their adherence, and any signs of misuse or addiction. Adjustments to the treatment plan should be made as needed [1].
  • Education and Informed Consent: Healthcare providers should educate patients about the potential risks and benefits of opioid therapy and obtain informed consent. They should discuss the safe use, storage, and disposal of opioids [1].
  • Flexibility: The guidelines emphasize flexibility, recognizing that each patient’s situation is unique. The approach to opioid prescribing should be tailored to individual needs and circumstances [4].

It’s important to note that these guidelines aim to strike a balance between providing pain relief for those who need it while mitigating the risks of opioid misuse and addiction, contributing to efforts to combat the opioid epidemic.

Sources:

Overall, while CDC guidelines are more liberal, many state guidelines have failed to be updated to reflect more modern medical viewpoints. Some states such as Colorado are so restrictive that they have only begun to update their ban on opiates when confronted with hard evidence of a direct link to the ban and suicide rates.

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Take Care Of Maya Verdict Commentary with The Cochran Firm Texas’ Bryan Pope, Esq. and RSDSA’s Jim Broatch

Bryan Pope, Esq. spoke to the RSDSA community during our virtual conference on Tuesday, November 7, 2023 to discuss “Lessons We Can Take Away from the Tragic Story of Maya Kowalski from Take Care Of Maya” right as jury deliberations began.

You can watch that discussion on our channel here.

Just 48 hours later, it was announced that Johns Hopkins All Children’s Hospital was found liable for the abuse claims against them by the Kowalski Family.

Watch as Bryan provides commentary on the verdict along with Jim Broatch, RSDSA’s Executive Vice President & Director.

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

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.

It Was Easier to Judge Me Than to Try and Understand

Written by Andrea Eaton for the 5th Annual Long Island CRPS Awareness Walk & Expo

Five years ago, I was diagnosed with Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy Syndrome (RSD). I was playing airplane with a 4-year-old. Two other children wanted to play as well, so they jumped on top of us. In that moment, I had two choices. I could allow the children to fall and potentially get hurt or break their fall. I chose the latter and ended up dislocating my elbow, breaking my radial head, tearing my tendon and both ligaments.

It was the most excruciating pain I ever felt.

I went straight to the ER where they knocked me out and relocated my elbow. I was not able to move, bend or straighten my arm. The orthopedist couldn’t believe the severity of the injury. He told me I may never have full range of motion of my arm again, and my response was, “watch me!”

I had to take a leave from my job as a kindergarten special ed teacher as I was physically unable to do my job. I went to physical therapy three times a week for three hours a day. The therapist would literally sit on my arm to make it bend and straighten until I cried. I was so determined to be ok again I was willing to do anything. It took four months of hard work and an elbow manipulation to break up scar tissue to reach my goal of finally having full range of motion back.

During that time, I had also gotten into a car accident and began physical therapy for my shoulder and neck. When I went back to the orthopedist, he told me all was healed, but the pain was still there; it was even worse than the day of the accidents. A little puzzled I went for a 2nd, 3rd and 4th opinion until finally I was sent to an elbow specialist at Hospital for Special Surgery (HSS).

After examining me, the doctor sent me to a pain management specialist who diagnosed me with CRPS. The burning, numbness, deep, sharp bone, muscle and tissue pain was/is unbearable. My skin felt/feels like it was/is paper thin and the mere touch could send me flying. I was affected from the tips of my fingers up through my shoulder blade and into my neck. It is so bad in my hands they almost always feel like they are on fire, literally. I went into a pretty bad depression, not being able to work and getting a lot of slack from my job. Very few people or doctors understood; I felt so alone and hopeless.

I ended up on countless medications and started getting sympathetic nerve blocks and spinal epidurals every month for a year. Things started to look up and I was going to be able to go back to work. Then in late August of 2019, I was crossing the street and I was hit by a bicyclist riding up the wrong side of the road. He came from behind a parked van and neither of us saw each other. I was thrown into the middle of the street and fell onto the left side of my body. Sure enough, because that’s the nature of CRPS (it spreads from further injury), it not only worsened my arm, neck, and shoulder; it spread to my lower back. I was not able to use ice to help with the pain and inflammation, because that too makes CRPS spread.

That was a hard lesson I learned at physical therapy. I always felt so much worse after icing my arm, and never understood why, until I did more research. I then began physical therapy for my back as well. I basically lived at my therapist’s office. I started getting more epidurals and sympathetic nerve blocks, but to no avail. I tried to go back to work, but the pain was so bad, I couldn’t manage. I wasn’t able to sit, stand, reach or bend for any period of time without excruciating pain. I felt isolated and misunderstood. I always knew/know it’s not anyone’s job to understand what I was/am going through, but it hurt that so many didn’t even try.

It was easier to judge me than to try and understand.

I looked perfectly fine as CRPS can be an “invisible disease.” I ended up taking another leave and opted to get a spinal cord stimulator implanted in my spine and my hip, which is a major surgery. It took 10 weeks to heal in any capacity. I also had a radio frequency ablation and a medial branch block performed. Unfortunately, each procedure only made my CRPS spread. It went up into my head and face, down my spine, across my back, butt, down my leg, into my feet and toes as well as internally into my abdominal area. I was (am at times) a complete mess. The hardest part was and still is, there aren’t many or any doctors that understand or really know how to treat CRPS.

For any of you who watched the Netflix documentary, “Take Care of Maya,” you saw first-hand how misunderstood and debilitating this disease is. CRPS presents itself very different in each individual making it so difficult to treat and diagnose. So many doctors think it is all in your head and you are making up the pain. They cough it up to anxiety; leaving you angry, confused, unseen or heard. By February of 2020, I had no choice but to go back to work because I used up all my allowed leave time. I would have lost my health insurance and that was and still is my life line. Because of the nature of my job, I was reinjured by a child in my class. This caused me to go out on another leave after only a month and a half of going back to work. Because the injury happened on the job, I was given two weeks leave. It happened two weeks before the pandemic began and schools were shut down. I was then able to work from home and keep my health insurance. During that time, like so many others, I was unable to get the treatments or physical therapy I needed; only making my condition worse. I dealt with a lot of anxiety, depression and PTSD to the point that I ended up being hospitalized for a short period of time.

CRPS is known as the suicide disease because there is no cure, flare ups are constant, medications and treatments are very short-lived leaving so many people hopeless. Insurance doesn’t cover most of the treatments that actually work because so little is known about CRPS and the research isn’t there. In September of 2019, I continued to work remote as a kindergarten special ed teacher. It was one of the most challenging and rewarding years of my career.

In May of 2020, I had to get my spinal cord stimulator removed because my body was rejecting it. It was causing more pain than helping at that point; it just continued to spread. I have/had done so much research on CRPS and found how ketamine is a game changer to help with the pain. I also found that it is necessary to stop the spread of the disease whenever having a procedure. A procedure as simple as filling a cavity to the most invasive of surgeries. Ketamine stops the pain receptors in the brain and basically tricks the brain for the time being out of pain. I wish I had known about ketamine or had been informed by my doctor when I had the spinal cord stimulator implanted. I know it would not have spread so badly after the first surgery.

The removal was very successful with ketamine, no spread, but unfortunately pain again increased to unbearable proportions. My mental state was also very affected by the ketamine due to the large amount given during the four hour surgery. I was in a “K hole” as they call it, for about three weeks. It was one of the scariest feelings I have ever experienced. I didn’t think it was ever going to wear off. In September of 2021, I was thankfully able to work remote for one more year in an office position. At this point, I was grasping at straws. I was trying everything to find a doctor that could help me. No one seemed to know enough about the disease and didn’t know where to send me next. I had seen dozens of doctors with no resolution. I was seriously loosing my mind from the pain, isolation, ER visits from the pain, recurrent ketamine use and trying to learn how to be a person I didn’t want to be; accepting something I didn’t want to accept. I have always been so active and adventurous, and all of that had/has come to an end, period.

In August 2022, I went to Holistic Centered Treatment Center in Idaho to try another way. I met an incredible Doctor, Traci Patterson. She truly changed my life. I was there for three weeks and learned how to calm my nervous system and vagus nerve, which therefore lowered my pain levels. There are people, like Dr.Traci that were/are able to go into a remission. I unfortunately am not one of them… yet. I continue to work her program at home as well as to fight this horrible disease, because that is who I am and always will be.

In October of 2022 I received disability retirement from the New York City Department of Education. It was a very bittersweet day for so many reasons. Anyone who knows me knows how I adore and connect with children. Knowing that I couldn’t do my job anymore was a very hard pill to swallow, considering all that I had to take! To think of being retired at 41 years-old is mind boggling. These have been the most challenging years of my life, and if you know you know, I’ve had challenges!

I know I could not have gotten through any of this without the love and support of my fiancé Alan, who is my biggest cheerleader, researcher, nurse, therapist, caretaker and best friend. My family and friends have also been my sanity and my rocks. I have made many friends along the way from different support groups and involvement in organizations like [RSDSA]. They continue to help me to understand myself, my body, my mind and how it is all affected by this insane disease.

I have hid from this disease for so long because I have felt like it defined me. I have been so embarrassed of this person I have become. It feels like I’m living in someone else’s body and mind. I am here now sharing my story, not for sympathy, but to spread awareness, help others going through a similar situation and remind us all that life can change in an instant.

When we search deep down inside ourselves, we can truly find the courage to take on life’s challenges. I am not always able to do this with grace and I’m doing it. There will always be scars, physical and emotional, good days and bad days. There are days and weeks I’m stuck in bed from the pain, exhaustion, depression, anxiety, brain fog and flare ups. It’s the good days that I work toward and look forward to. You may see me dancing and having a great time and wonder, “how is she doing that, she must not be that sick.” I’ve gotten the, “you don’t look sick,” more times than I can count. It hurts to hear and it’s just the reality of the disease. I push myself knowing I will pay the price in the next hours, days and weeks to come. I take that pain because It’s worth it to have a taste of the old me sometimes.

I will continue to fight, research and be part of the cure because I am not CRPS. I have learned it doesn’t define me, it is a part of me. I am a CRPS warrior who fights every day and I ask that you help support me and all the others who are suffering from this very misunderstood, debilitating disease. Thank you for taking the time read my story and share in the mission to raise money for continued research and education; to finally find a cure so all CRPS Warriors can go into remission.

All my love, always! I am CRPS Strong!

An Energy Leader’s Journey of a Thousand Miles

Written by Josh Levs for allyenergy.com. Reposted with permission from Diane Burman.

Anyone deciding to run their first marathon is taking on a tremendous challenge. But for Diane Burman, who serves on the New York State Public Service Commission, it seemed unimaginable.

As a child, she had numerous bone and muscle problems that required multiple surgeries. She spent years in and out of hospitals, and at times had to use a wheelchair.

“Back then, many schools couldn’t handle kids in wheelchairs,” she recalls. “I stayed home and had a tutor.”

As an adult, she was diagnosed with complex regional pain syndrome. The Mayo Clinic describes it as a form of chronic pain that “typically develops after an injury, a surgery, a stroke or a heart attack. The pain is out of proportion to the severity of the initial injury. CRPS is uncommon, and its cause isn’t clearly understood.” Discussing Diane’s struggle once on Facebook, her husband Jonathan wrote, “I’m going to try to use Diane’s example of strength and dignity and perseverance in the face of real suffering as a model to emulate.”

Two years ago, Diane had brain surgery.

“They put a stimulator in my brain to help tamp down the significant health issues and pain issues on the left side of my body,” she says. The procedure helped bring her pain down from “off the charts” to about “a seven or eight out of ten on a normal day,” she says.

Though that’s still very high, she decided to “figure out how to live life to the fullest and get back with my personal and professional life, moving forward knowing what I need to do to deal with the pain without medication.” Being involved and present both at work and at home helps a great deal, she says.

Earlier this year, ALLY Energy CEO Katie Mehnert invited Diane to join the Women & Allies in Energy team for the TCS New York City marathon this coming November.

“I initially thought, ‘Oh, I can’t do this, physically and mentally,’” Diane says. “But the more I thought about it, the more it fit within the realm of all that I’m doing in the energy space, and trying to collaborate and succeed at things that seem insurmountable.”

So since February, she’s been running, increasing her distances incrementally. She joined her son and some of his fellow Army cadets for a 5K in Vermont. “At the end, listening to the cheers, you would have thought I came in first even though I came in last!”

She has a half marathon coming up. And when she participates in the New York race, the world’s largest marathon, it will be a significant date for her: “Two years after my brain surgery.” The next day, November 6, is Color the World Orange Day, created to bring recognition to CRPS.

The power of alliances

Diane is one of seven people on the commission that regulates energy, telecommunications, cable, and private water utilities for New York, a state of nearly 20 million people. As an energy leader who shares ALLY’s commitment to net zero, she sees the huge challenges that lie ahead. She’s working to help guide the transition to cleaner, greener energy while ensuring that people have the power they need along the way.

“Safety, affordability and reliability are critical,” she says. “And energy is personal to everyone. Most people can remember a time when they had a significant loss of power.”

A blackout in New York City when she was a child has stuck with her. “I was in a hospital critical care unit, listening to the grownups — doctors, nurses, and others — scared about the generators running out and how to triage the patients. I realized then the importance of the lights staying on and that planning. Who’s stepping up and being a leader? What’s the organizational structure?”

Cooperation is essential in making energy work and making the energy transition happen, Diane says. It takes a diverse community of people, with different knowledge, expertise, skills, experiences, and perspectives. And it takes a willingness to learn from each other. All this makes the marathon team such a strong metaphor.

“There isn’t one way to be an energy regulator, just as there isn’t one way to run a marathon. You have to have an openness to continuously trying to improve and learn. You need the right resources and supporters as well.”

Diane has worked to bring more women and people from marginalized communities into the energy sector. The more new and different contributions, she says, the more ways to see “challenges as opportunities.”

And just like in the marathon, Diane says, it’s crucial to have a realistic understanding of how long and hard the path to net zero will be. That means considering the pros and cons of handling each step in different ways. “And you need to know, when there’s a setback, to not just give up.”

Perhaps most importantly, Diane says, it takes allies.

“Being there for each other is a powerful thing.”

After Thirteen Years of Unspeakable Suffering I Got My Life Back

Written by Jason A. Fox for the RSDSA blog.

A lot of my patients have been surprised by how understanding I am of their pain, or how quickly I can tell they are hurting before they say anything. They’re shocked to find out that behind my smiling face I have one of the most painful conditions in the world, complex regional pain syndrome (CRPS), previously known as reflex sympathetic dystrophy (RSD).

I crushed my arm in the military in 2009. There was decreased awareness about CRPS at that time. I didn’t receive the appropriate treatment and I was medically retired under a different diagnosis.

The first six years were a living nightmare. Every day it felt like my arm had been dipped in burning oil. It was weak, atrophied, partially paralyzed, and I had a terrible tremor. Some days I just wanted to cut my arm off. I know now that wouldn’t have helped! It sure seemed like a better idea at the time, but I am thankful I didn’t.

In 2017 I met an excellent physician who gave me the correct diagnosis. He helped me learn how to manage my condition. I got my pain level under control enough to finish my undergraduate studies at Liberty University. I received a lot of support from my alma mater, and they were integral in helping me learn how to be an effective student despite my disabilities. The condition thankfully went into a partial remission and became tolerable.

In 2020 I began attending Alverno College in Milwaukee to obtain a Bachelor and Master of Science in Nursing. The nursing professors at Alverno were incredibly understanding of my condition and very supportive when my condition would flare up and make it difficult to get through a lecture. The Department of Veterans Affairs also supported me throughout my recovery journey and their Vocational Rehabilitation department funded my education and provided me with the resources I needed for success. They worked hand in hand with my university to ensure I was able to meet my goals.

In December of 2022 I graduated. My first work experience after 13 years of disability was in the operating room for Aurora Medical Center – Summit in Summit, Wisconsin. They have a fantastic surgical team at Aurora Summit. My wife had an unexpected severe reaction to anesthesia during a minor procedure in 2021 while I was in school, and they saved her life. This was where I wanted to start my nursing journey. During my work there I learned that spinal cord stimulation was a possible treatment for CRPS. I met a brilliant physician there, Dr. Colin Stair, who specialized in interventional pain management. He told me if my condition ever came out of remission to come see him.

Well… it did. In a big way.

I made it through two years of nursing school and four months of work before CRPS came back and it was worse than I had ever experienced. My arm began turning purple, and it felt like it was on fire 24/7. I could no longer handle my duties as an operating room nurse and had to resign and take care of my health.

Dr. Stair and the incredible surgical team at Aurora Summit implanted the Medtronic Intellis device. The next morning when I woke up from my first surgery, I finally had a point of reference to compare my pain to. My arm hurt worse than the fresh surgical incisions in my back, with no pain medication in my system. That’s what I lived with for thirteen years. Pain worse than surgical wounds.

When we turned on the Medtronic Intellis at my follow-up appointment, I experienced complete pain relief. My arm color returned to normal, and I regained full use of the motor function in my arm with no tremor.

After thirteen years of unspeakable suffering I got my life back. 

I Became What Didn’t Exist for Myself

Written by Sally Fowler for the RSDSA blog.

I’ve been living with CRPS for 10+ years. Mine started after a horseback ride severely twisted my right arm behind my back, causing nerve damage. It took about four years to spread to full body pain, muscle spasms, tremors, brain fog, partial paralysis, loss of limb awareness, loss of balance, thermoregulation problems, and more. It took five years to be diagnosed; by then, several doctors told me there was nothing they could do for me. 

I’d planned to be a horse trainer & professional horse photographer, and went to college 843 miles from home to pursue that career. I sustained my initial injury my freshman year, two months into the first semester. I had three friends, no nearby family, and no primary doctor. I didn’t know it at the time, but that ride disabled me. Mid-way through college, I discovered a natural talent for baseball photography, and I switched my career focus to it, because I couldn’t ride anymore. By senior year, I could barely hold my camera for 30 minutes without severe pain and tremors in both arms. Riding and driving triggered hours-long neck paralysis. I didn’t get early treatment when I needed it most, because while I saw a doctor within the first year, and he did mention RSD, he was convinced I couldn’t have it because it was rare. His mistake, plus my lack of knowledge and resources meant by the time we got the diagnosis, I was already disabled, and beyond the point of traditional medical assistance. 

After college, my life was ruled by CRPS. Nowhere and nothing was without pain. I was worried and cautious. I wasn’t active. My quality of life was terrible. I felt trapped, angry, and hopeless. My boyfriend encouraged me to try photography again as a hobby. I dismissed it, reminding him of all my new limitations. He joked that all we needed to do was get me a service llama (not a real thing) that I could ride, strap the camera to its neck, and work that way. It was probably the brightest, funniest spot of my day. It sparked an idea we hadn’t considered yet – what about a service dog?

The first time I felt safe with CRPS was six years after my initial injury. 

I fell while playing outside with Robbie, my service dog, and blacked out for a few seconds. When I came to, he was pushing his nose against my face, licking me, and standing over me. My hands were burning with the pain from hitting the ground, my whole body was shaking, and I felt incredibly weak. As he had been trained, Robbie pushed his head under my arm, pushing me off the ground and onto his shoulders. From there, I pressed one hand against his chest, one hand on his shoulders, and brought myself to a stand while he assisted, standing as still as stone. Walking ever so slowly, my hand on his shoulders, Robbie led me back inside the house, helped me change into comfy clothes, and into bed, then laid nearby. What once would’ve taken 20 minutes to get to safety, Robbie did in five minutes. 

Robbie was the beginning of changing impossible to possible. There weren’t CRPS service dog trainers available to help me train him. I took my experience training horses, reapplied the knowledge to training Robbie, then developed my skills and education as a dog trainer. Today, I own a dog training business. Disabled Advantage is dedicated to helping others with CRPS train their own service dog in the U.S., and coaching people with CRPS anywhere in the world. I became what didn’t exist for myself. I’d like to share a bit about CRPS Service Dogs, and give you access to reliable information.  

What is a CRPS Service Dog?

It is a type of service dog who helps someone disabled by CRPS. Not everyone living with CRPS needs or wants a service dog’s assistance. A service dog has the potential to be as variable in its work as the CRPS is, making their assistance transformative where other approaches have failed.

What Tasks Might a CRPS Service Dog Do/How Do They Help?

Typically, service dogs do tasks (activities) that are impossible for their handler to do. CRPS service dogs provide a broader range of assistance, performing tasks which are difficult, impossible, and those known to trigger pain. The service dog doing the activity prevents the handler from developing the flare they would’ve incurred by doing it themselves, thus keeping day-to-day pain levels more stable and manageable. They work to prevent flares, assist during flares and day-to-day life functions, and help us recover after a flare, thereby increasing a person’s functionality and independence. Though not a cure, CRPS service dogs are a game changer. 

In my experience working with and talking to CRPS teams, most people need a light or heavy mobility dog, primarily assisting with mobility-based tasks, given the far-reaching impacts CRPS has on our bodies. The dogs are often cross-trained in psychiatric tasks to help with anxiety, depression, brain fog, & tasks specific to CRPS and compounding disabilities. Tasks may include:

  • Opening/closing doors
  • Assistance rising from a chair, bed, or the floor
  • Stabilization for walking, getting dressed, in/out of the tub, rising from a chair, dizzy, etc.
  • Bringing specific items or people
  • Providing deep pressure for pain/anxiety/tremors or body warmth to stabilize temperature
  • Remind to take meds, to move around, etc.
  • Moving heavy objects
  • Assisting with repetitive motion chores, such as laundry
  • Carrying flare kit in a pack
  • Guiding handler to a person or place when disoriented or post-fall

How Might I Partner with a CRPS Service Dog?

  • U.S. federal law allows people to train a service dog themselves, with a trainer’s help, or by applying for a pre-trained dog from a program or charity. Currently, there aren’t programs specifically for CRPS Service Dogs, and very few trainers know of the syndrome or what considerations go into training a dog to work with a CRPS disability. Programs typically advertise based on need, such as mobility or psychiatric, not specific conditions. Many programs don’t offer brace or balance tasks. 
  • In other countries, you must go through an organization or work with a trainer. Check ADI to find assistance. 

What Should I Consider If Training My Own?

All service dogs need to be well-built, have no health issues, the right size for the task assistance needed, and the right temperament. Before looking for a dog, you need to know what tasks you need.

  • Size – The more intense the task, the bigger the dog. Mobility dogs need size on their side to help with stabilization, opening doors, and moving objects. Any service dog must be well-balanced, well-built, and not disabled themselves. 
  • Temperament – Confident, friendly, willing to work, medium energy, focused on you, 
  • Coat – Being able to tolerate the feeling of their fur & fulfill grooming care needs is vital
  • Barking – If you have centralized CRPS, barking can trigger vertigo, passing out, and dizziness. 
  • Finances – No service dog is free or cheap. Owner-training can be $1,000/year for upkeep alone of health, toys, food, grooming, if not more. Service dog training is specialized for a reason. Your local pet shop will not be able to provide the level of training a service dog needs. 
  • Exercise – Doing their job isn’t enough. I rely on a variety of outlets, including fetch, puzzle games, walks, a treadmill, and agility.  

Can I Just Get My Dog Certified/Registered?

In the U.S., certification and registration are not required by federal law. Select areas have voluntary registries, but doing it doesn’t turn your dog into a service dog. Websites offering certification and a vest are scams. A vest and a piece of paper don’t make a service dog. Intense training over 1-2 years in obedience, socialization, public access etiquette, and task training builds a service dog, along with the dog having the right temperament and suitability for the job. 

Where Can I Find Reliable Information and/or Help?

  • Assistance Dogs International – Learn about service dogs, find a program or trainer accredited by ADI through their “member search”, best resource for international
  • Ellas Animals Inc. – a nonprofit who helps people owner-train service dogs in the U.S.

Connect with Sally via her website, Disabled Advantage Dog Training & Consulting, LLC, on Facebook via her page titled Disabled Advantage Dog Training & Consulting, LLC, Instagram via @disabledadvantage and on Patreon via disabledadvantage.

A Keyword Gave Me an Instant Denial

Written by the Hon. Jenn Coffey for the RSDSA blog.

On the occasion of marking Medicare’s 58th birthday, I teamed up with an organization called “Be A Hero.” An organization that believes we should be able to access care without selling our lives away. Things like ketamine infusions and LDN (Low Dose Naltrexone) have helped some CRPS warriors. So many of us can’t even get a chance to try these therapies with expensive price tags impossible for most to reach. They work with people to help fight the private insurance monoliths that turn their backs on our medical care needs. 

Be A Hero says, “Here in the richest country in the world, and everywhere, we believe health care should be a human right. Everyone should have the care they need, no matter who they are, where they live, what job they have, or whether they have a job at all. Our team takes on critical fights to transform America’s healthcare system so that it guarantees all of us the care and dignity we deserve.”

My first meeting was with the finance committee chaired by Senator Wyden’s staff. I met with one of the same staffers I had before. Now I was coming back to tell her how everything we had fought for the first time, didn’t happen. That I was still fighting for care. How they still found a way around covering me. I reminded her about CRPS and the treatments and medications we need access to. I even showed her a text message denial.

The first message says “Thanks for submitting your request.” Nine minutes later, a denial text came. I was still on the phone with the service navigator who helped me file the request. She immediately said to me, “Oh, I thought that would happen; it’s the name of the medication.” 

So a computer decided. A keyword gave me an instant denial and instructions to appeal it in writing within 30 days. Then they get between 30 and 60 days to make a decision on that appeal. These are the kinds of delays in healthcare that are killing people every day in this country, all in the name of profit. I would love to say that I won her over, but I didn’t. We are going to have to push harder and lobby more. We are just not there yet with the Senate Finance Committee. What we need are hearings on denials and delayed care. 

I met up with New York City Retirees fighting to keep their traditional Medicare. They are fighting against being forced into a Medicare (Dis)Advantage plan. Our story gives them ammunition and firsthand knowledge of Medicare (Dis)Advantage plans. We had lunch together and spoke to each other in small groups. Then off we went, back to meet with more senate staff members to plead our case. 

We gathered in the Senate Hart Building Atrium to celebrate Medicare. We encouraged those around us to realize that we are working to give everyone the same chance for a well-lived life, with access to medical care and medications currently reserved for the rich and elite, some of whom are the very shareholders profiting off of our pain. 

I was able to meet with Senator Shaheen’s staff (she is my Senator.), They were not happy to see me back in their office, telling them how everything I thought I had won last month was pulled out from under me. They truly saw that we are fighting for our very lives. I had help from Senator Hassan, also my Senator, just a week or so before. Now I had a second United States Senator fighting for me.

They understand that we are not looking for privilege, but access to the very care that enables many with CRPS and Small Fiber Neuropathy to live. Simply existing is not living. I walked out feeling very heard and seen. I know that there are a growing number of people on Capitol Hill that now know we exist, and that we vote. We need them to represent us against these for-profit private insurance companies that are reaping billions from the care they choose to deny. 

We all pay into the Medicare system, believing a promise that it’s there for us when we need it. I’m disabled, like many of you. I was forced into the system and didn’t understand what I was looking at. Now, I am stuck on a Medicare (Dis)Advantage plan. Current laws allow insurance companies to hold pre-existing conditions against us, so switching back to traditional Medicare with a Medigap is seemingly impossible. 

The companies collect what we pay into Medicare, and then pocket up to $73 billion dollars per year that should be put back into the Medicare program. This money is the product of overbilling taxpayers. They buy bigger yachts while we ration our care. Can you imagine if that money was invested back into Medicare? Dental, vision, and hearing benefits could exist with no premium increase. Instead, shareholders get profit checks while we get text message denials of life-saving care. 

We sang Happy Birthday to Medicare and spoke of what we wanted for healthcare. Most want nothing more than access. We have these treatments and medications available, but every day people suffer without them, all in the name of the almighty dollar. 

From there we marched to Capitol Hill and it was surreal. Marching and chanting with all these people was mind-blowing. It felt empowering to be among them. My friend Meagan was my handler again. She’s amazing and spends her days fighting for us. She has looked after me now on three trips, and I couldn’t be in better hands. 

I took a conscious moment to take in the sounds of the people chanting and their footfalls on the pavement. It was a beyond-hot day. There was no escaping the heat of the sun, but brief moments of shade from a building or a tree were welcome. 

The vast majority were wearing “Be A Hero” t-shirts, challenging those we passed to do just that, to join our fight. Looking around me, I was surrounded by retired teachers, activists, and first responders representing fire, police, and EMS. Some were even 9/11 first responders, who should be home retired, but instead, they marched with me to fight to keep their traditional Medicare policies, as if they hadn’t sacrificed enough already.

We had a planned press conference that was to last a half hour. I and Megan Bent shared our Medicare (Dis)Advantage stories. We made fast friends and bonded over our painful stories. 

Then something unexpected happens. The few Senators who said they would show up didn’t come alone. Many other Senators and Representatives showed up. All of them vowing to support us and fight against the corporate greed that is killing people in America every day by denying and delaying care. 

I stepped up to the podium as one of the first speakers. I told the story of cancer leading to CRPS. I started to stumble a couple of times, finding it harder to say the words out loud than when I rehearsed privately.

The press event went on for over an hour! When it was over, one of New York City’s finest came to me and shared their pain. I stood in shock as they shared the death of their own child to suicide due to Complex Regional Pain Syndrome. He was only about 23. I have little doubt in my mind that this is just one among many such stories in NYC. 

Be A Hero “believes that Congress has a responsibility to protect the rights of, and advance health equity for, everyone with Medicare including older adults and people with disabilities on Medicare (Dis)Advantage plans.” I certainly couldn’t agree more. 

What Do You Mean Denied? I Can’t Do My Old Job!

Written by Jeffrey A. Rabin, Esq., for the RSDSA blog.

This is a common question from new clients. Often it is followed by: “The company has gone out of business anyway!” Unfortunately, this is often not meaningful in a Social Security Disability application.

Social Security is considered to be a “total disability” program and whether someone can work is determined by their age, education, work experience, and most important, their Residual Functional Capacity (RFC) determination – that is, what is the most that they can still do in a full time work setting despite their medical problems.

In the Regulations, Social Security has a 5 step analytical process called the “Sequential Evaluation Procedure” which is applied by every decision maker in the system.

The first step asks whether the Claimant is working – if they are not, the analysis goes to Step Two.

Step Two asks whether the medical evidence documents a “severe” impairment – one that at least minimally impacts on work function. For example, high blood pressure is a serious medical problem but does not impact on work function until there is severe end organ damage so it is usually a “non-severe”impairment for SSD purposes.

Assuming there is, then Step Three asks whether the medical proof indicates the medical condition “meets or equals” the Listings of Impairments. This is very severe medical criteria set out for many medical problems. If that is met, disability is awarded.

If not, then Step Four asks what is the Claimant’s RFC, and does that allow for performance of any of the “types of work” that were done in the last 15 years. That does not ask whether the old job is available or whether the Claimant would be hired. It simply asks, can the Claimant “function” at any of the types of jobs performed in the last 15 years. If yes, the case is denied. Therefore, at the outset of filing the application careful consideration needs to be made of all past work in the last 15 years.

If at Step Four it is determined that the Clamant can not perform past relevant work then at Step Five SSA asks: Considering the age, education, work skills and Residual Functional Capacity, are there other jobs this person could do on a full time basis in the national economy? If yes, the application is denied. If no, the benefits will be paid.

The state agencies hire vocational experts at the initial and reconsideration level to give reports on the kinds of jobs a Claimant could perform considering their medical limitations . At hearings many Judges hire vocational experts to testify as to the existence of other jobs the Claimant can perform given their RFC and the other factors. This testimony, and the cross-examination of these “experts” often decide whether an application will be approved.

Social Security has some guidelines that help – these are called the “Grid Regulations” and they guide decision makers in the application of RFC, age and education issues.

For example, if an ALJ finds that a Claimant older than 55 cannot perform past relevant work, has no transferable skills, less than a GED education, and has a RFC for light work, that person is disabled under the Grid. However, if that same person has a high school degree and can perform light work, their application is denied.

If you change the facts to state that at most this person can do is sedentary work then benefits are awarded. But, if that same person has transferable skills to other sedentary jobs then the application is denied.

The point of these examples is to show that these determinations are complex and that simply the inability to do past work does not mean that benefit will be awarded.

Want to learn more? Our in-service sessions on Social Security Disability benefits usually qualify for Free CEU credits for staff that attend. Give us a call and get on our calendar for a free in-service at your location, or on Zoom, soon.

Prepared by Jeffrey Rabin, Esq.
Jeffrey A. Rabin & Associates, Ltd.
2604 Dempster St. Suite 508
Park Ridge, IL 60068
847-299-0008
[email protected]

I’m a Young Male Adult and Although Disabled, I Don’t Look It

Written by a 2023 Young Adult Weekend Retreat attendee for the RSDSA blog.

Complex Regional Pain Syndrome affects every part of one’s life. The constant pain you are in restricts you from enjoying life. Aside from the pain you are in, your social life will ultimately be affected. I recently learned that CRPS is generally found in women. 85 percent of cases to be exact. I fall in the less prevalent 15 percent category of men with CRPS.

Men and women can both have CRPS, but our experiences with this condition are not entirely the same. Men are taught from a young age to be the “tough” guy. We are told to be the “man” of the house. Whenever I am on an airplane, I am usually asked if I can lift someone’s luggage into the overhead bin. It is usually a woman that asks me to help them out with their heavy suitcase. In these cases I feel somewhat defeated. Can I lift the bag for them? Sure, I am physically able, but it will definitely hurt. I feel uncomfortable in these situations as I do not feel like explaining myself to a total stranger.

I recently attended RSDSA’s Young Adult Weekend Retreat in Philadelphia. I had a great time, but I was the only male in attendance. I know that men are the minority when it comes to this diagnosis but I do wonder if men do not show up because they may not want to be vulnerable. Men do not always enjoy talking about their feelings and what is going on in their life. We try to be quiet and just attempt to get through it. This is definitely not a healthy practice as we all need to vent and meeting others who suffer just like you do can be beneficial.

As much as I would like to have someone in my life, it is often difficult to put yourself out there in todays dating world. This condition is scary. Any Google Search will show you that CRPS is nicknamed “the suicide disease.” You want people to understand, however, you don’t necessarily want to tell someone you just met about a condition like this one. But at the same time, you want to be able to talk about it. It is also hard to market yourself when you have not been able to hold a job for the past ten years.

In addition, just hanging out with a woman can be difficult. I live right outside NYC. Usually the women I speak to via dating apps such as Hinge, live in NYC so naturally that is where the dates are. Going to the city and exploring requires so much energy, the thought of it gives me anxiety. But I believe chivalry isn’t dead and a woman should be treated properly. I like opening doors, walking women home, and paying for both of us when we spend time together. Since I am disabled, I live on a fixed income and may not always be able to afford to do all the things I would like to do for someone. It often becomes very easy to feel defeated.

One of the positive outcomes of having a diagnosis of CRPS is that you really learn who your true friends are. I am lucky to have a group of friends who have been there for me through it all. However, I have lost some along the way. In addition, it becomes difficult to make new friends at my age especially in my case. I do not have the energy to form new friendships and being disabled doesn’t exactly allow for me to be out and about so often. I would much rather be home watching television in most scenarios. When I do meet someone, they always ask the question, “So what do you do?” I’m a young male adult and although disabled, I don’t look it. Besides some scars from past surgeries, I look completely healthy. Most men my age are in their prime building their resumes and taking care of their family. This is not the case for me.

The minister at my local religious institution came up to me at the last holiday. He wanted to know if I would be interested in attending his “whisky and wisdom” events catered to young male professionals. I have attended a few and I am always very uncomfortable. I am on a great deal of medications and definitely cannot drink whisky. I also do not have so much in common with these young male adults. I have tried to explain my condition but anyone reading this knows how that goes. I have family members who have asked me if my condition could be psychological, let alone strangers who are meeting me for the first time.

There are times where a wheelchair might be needed in social settings. I attended a concert with what I thought was a close friend. I told him about my need for a mobility device. He was apprehensive to the idea and ultimately did not help me out. I was just left to walk with the chair and just sit in random spots when I got tired. I have not spoken to this “close friend” since that night. Obviously this did not make me feel great, but I did learn a lesson. Keep your circle small, but have a few great friends.

Without the ability to work or get out and about, loneliness sets in. Although I do have family and friends to speak to, it’s not the same as having a significant other. I promised myself that I would try to explore the dating scene once again.

I will continue to fight this condition and do my best to raise awareness. I hope that I can one day meet more young male adults. I am forever grateful to the RSDSA for providing resources and hosting their Young Adult Weekend Retreats.