It’s Challenging to Concentrate When Your Brain Is Always Signaling Your Body’s on Fire

Written by Pain Coach + Chaplain Bonnie Lester, MA for the RSDSA blog.

How and when did you develop CRPS/RSD?

I developed CRPS in 1986 in my left dominant hand and left shoulder after my car was hit by a speeding drunk driver. Two years later in 1988 I underwent a left cervical sympathectomy after repeated stellate ganglion blocks failed to bring extended relief. The surgery spread CRPS from the left side of my neck down to my left foot and left me with a useless dominant hand.

What has daily life been like since your diagnosis?

Since I was diagnosed 38 years ago I have learned the importance of incorporating self-care into my life in conjunction with the treatments suggested over the years by my health care providers. Though I achieved remission 30 years after my diagnosis and have been pain free for nine years now, I raised my son and lived through a divorce and remarriage during the years I lived with high levels of burning pain. I survived three decades of CRPS by following a disciplined approach of taking an active role to incorporate comforting activities in my day. This ranged from using a TENS unit, using mindfulness strategies, challenging my negative thoughts, and listening to soothing and uplifting music throughout the day.

What is one thing you wish those without CRPS/RSD could understand?

Some things I’d like others without CRPS/RSD to understand is that it’s challenging to concentrate when your brain is always signaling your body’s on fire. I’d also like them to understand that it’s more helpful to ask, “Can I help you in any way?” rather than saying “I’m sorry you’re in so much pain.”

What advice would you give to newly diagnosed Warriors?

Science has made great advancements since I was diagnosed in 1986. Today there are a wide array of options to address persistent pain and the earlier a person is diagnosed with CRPS and begins treatment the better the outcome. It’s essential for you to learn basic pain education to understand what is known about CRPS at this time as well as learn how persistent/chronic pain is different from acute pain. Science says an optimal outcome in dealing with persistent pain can be achieved using the mind/body approach which includes incorporating healthy lifestyle behaviors such as movement, nutrition, stress management, achieving a restorative sleep, and maintaining positive social connections.

What encouragement would you give to Warriors who have had CRPS/RSD for many years?

I am now in remission after living with CRPS for thirty years. Remission is possible regardless of the length of time the condition has existed.

What activities or treatments have helped you find temporary or long term relief?

I understand each of us are unique and our experiences with the same treatments may have different outcomes.

What I found most useful:

TENS unit and Soma, a muscle relaxant.

The many different antidepressants and anti-inflammatories I was prescribed barely dialed down the pain. I couldn’t tolerate Neurontin, a commonly prescribed medication for CRPS. I used Fentanyl and Norco for nine years but it didn’t reduce my burning pain. I achieved remission after I learned about neuroplasticity in 2010 and decided to incorporate neuroplasticity exercises into my life.

I used sensory stimulation activities that I created on my own and achieved a pain-free life. I tapered off of all my pain related medications and now live an active life at the age of seventy-one.

Since I achieved remission and regained the use of my hands I’ve entered the cyber world and discovered neuroplasticity is now the basis of some CRPS treatments. One such treatment is guided motor imagery (GMI) that some physical therapists and occupational therapists are using with their CRPS patients.

Anything else you would like to add?

In 2021 my educational and inspirational Instagram account attracted an invitation to appear on a podcast interview. During the interview the host encouraged me to author a book about my miraculous recovery and my affordable and accessible strategies for pain management. While I researched the world of apps to include in the resources section of my book I discovered TrainPain, an app based on neuroplasticity science. This mindfulness app integrates physical sensations with game-based training.

After meeting with the founder of TrainPain I was invited to partner with TrainPain to present free patient education workshops for newly diagnosed CRPS patients.

Here’s how to connect with me:

Email: [email protected]

Instagram: @bonbonlester

Website: BonnieLester.com

On my website you can sign up to receive my newsletter that provides science-based information and free PDF’s with strategies to feel better now. 

I Have Hope That I Can Be a Light in the Darkness

Written by Patty S. for the RSDSA blog.

This past April, I celebrated my 30th year of having CRPS and only having the diagnosis 28 years. Where does the time go when one is having so much fun?

In 1993, I was the middle car in a three-car accident. I hurt my neck and back. It took a long time to get better. Yet something strange happened to my right arm – it would swell up, turn red, and burn, then change to blue, feel cold, and still burn. I saw 20 doctors over two years, and nobody could figure it out. They finally said I might have Reflex Sympathetic Dystrophy (RSD), now called Complex Regional Pain Syndrome (CRPS), a rare illness with no cure. They told me to get used to the pain, because I would have to live with it forever.

I went to a psychologist for psychological testing. He knew about CRPS and suggested I see Dr. Kirkpatrick in Tampa. By the time I saw Dr. Kirkpatrick, my right arm was so sensitive I couldn’t touch it, and each finger was almost three inches wide. Dr. Kirkpatrick had a plan to help me get better. He gave me 50 articles to read about CRPS.

The doctor’s treatment plan started with six blocks on my ganglionic nerves twice a week. It worked, and I got a confirmed diagnosis of CRPS with some hope. I had many more rounds of blocks, and I even had surgery to remove part of my sympathetic nerves. I thought I was cured and went back to work part-time. But every six months, I had to get more blocks because the pain came back.

In the following five years, I had two more car accidents, and the CRPS spread to my left foot, hip, face, head, and whole left arm. I had almost 100 blocks in a year, plus many other treatments like hypnosis, TENS unit therapy, water therapy, physical thearpy, and more. I even tried something called the “burnout method” that hurt so bad it made me pass out, but it didn’t work.

In 2008, my right arm and left leg got much colder than the other side. More blocks and ketamine were added, and I learned how to do biofeedback. But my regular doctor couldn’t help anymore, and in 2010, new doctors said I needed on disability. That’s when I lost hope, lost friends, and couldn’t go to the beach. I had ketamine infusions, more blocks, and “The Suicide Disease” took over. I lost hope yet had to be the caregiver of the family.

By September 2022, I had reached my end. I felt isolated. Stiffness and swelling made me fall and suicide was all I thought about. I lost all hope. I hadn’t smiled or laughed for years.

Then I was asked to try out a program called Override, in March 2023. One of the pain coaches, Brenda, called me and told me about Override’s virtual Comprehensive Pain Program that might help. It involved seeing a team of pain specialists including a pain physician, psychologist, physical therapist and health coach that all actually worked together on the same team. They would also teach me about pain science and how to take control of my pain. And I could participate from home since the treatment was all virtual. 

I was very skeptical and thought it wouldn’t work, but I decided to give it a try and postpone suicide for six months.

I listened, practiced, and learned a lot about managing pain with Override’s team. Three months into it, I still had bad pain days, but within 40 minutes without any pain medication, I could reduce my pain from a 10 to a 5 using a technique Override taught me called deep breathing and visualization. That was faster than a pill would work! I was even able to sleep more than 25 hours a week.

Four months into Override’s program, I could stop any suicidal thoughts and started having a little hope. After 30 years of pain, I learned to accept it. I had a little control, felt calmer, and could smile. In five months, I could smile more, manage pain better, and my self-esteem went up. I could laugh without it hurting, and I could reduce pain in 27 minutes. I had hope and could achieve my goals.

Since completing my program at Override after nine months of treatment, I have peace and joy five out of seven days a week. It’s not perfect, but it’s pretty unbelievable compared to where I was.

I recently ate out at a restaurant, went to church and sat through services, and attended a prayer group. I haven’t done these things in 18 months. Now that I’m getting out, I can talk to someone other than my dog, and he’s grateful!

Just months ago, I didn’t think I had any purpose in life except to suffer. Now, I’m planning to volunteer with an organization starting March 2024. I have hope that I can be a light in the darkness, and I know I have a future thanks to Override. I am getting better at the tools, yet would still like a cure.

Learn more about Override via their website and our June 2023 livestream.

Please consider supporting RSDSA with a monthly gift.

FDA Approves Full Body MRI for Abbott Proclaim DRG Neurostimulation Device for CRPS Lower Limb Treatment

Abbott says four out of five people who are implanted with its Proclaim DRG device experience significant pain relief and improved quality of life.

The new FDA approval now allows patients to receive MRI scans while implanted with the device, eliminating the need to sacrifice MRI imaging to access this type of pain relief.

By James Doulgeris, Chairman, RSDSA Advisory Committee

The Proclaim DRG provides targeted relief for people with complex regional pain syndrome (CRPS) Types I and II of the lower limbs. It stimulates the dorsal root ganglion (DRG) clusters of nerve cells found along the spine providing “significant pain relief” in four out of five patients. 

This implant, however, has come at a cost because patients with the implant were not able to get MRI imaging anywhere in the body before this approval except in specialized facilities. Now they can at any imaging center.

If you have this device implanted, or are considering having one implanted, you will find more information in Abbott’s press release or by consulting with your surgeon.

Updates are provided as a service of your RSDSA Advocacy Committee

Contact us at [email protected] 

Interested in volunteering as a member of the Advocacy Committee? Its as simple as emailing us at [email protected] to learn more. Or you can support us with a monthly gift. Just click here!

RSDSA receives no governmental support. We are totally reliant on donations from the CRPS community and from our fundraising events. Thank you for your kind consideration.  

Buying Prescription Drugs from Canada is Now Legal in Florida

Written by James Doulgeris, Chairman, RSDSA Advocacy Committee

It is now legal to purchase prescription medications from Canada, which are as much as forty percent less expensive than those available in the U.S., in Florida directly from your local drug store and online. They are FDA approved and safe to use, however, it will take time for the system to absorb this monumental change in distribution and regulatory approval systems.

The approval of Canadian drugs in Florida is expected to reduce prescription drug costs for residents while maintaining safety standards through FDA oversight. This could potentially serve as a model for other states seeking to address the high cost of prescription medications.

Here is how this new approval will affect Florida residents and how the system will change over time:

Cost Impact

Lower Prescription Drug Costs: The approval allows Florida to import inexpensive prescription drugs from Canada, where medication prices are typically lower than in the United States. This is expected to result in cost savings for consumers in Florida, but not for everyone and not directly.

  • Commercial Insurance – Any savings to be passed on to consumers as PBM’s (Pharmacy Benefits Managers) assess price advantages of Canadian versus U.S. sourced drugs, and these are done on a national basis. In any event, cost savings will be indirect in the form of lower co-pays or insurance premiums. This law pertains only to Florida and it will take time to sort things out. 
  • Cash Customers – It is uncertain how consumers will be able to price shop between country of origin. It will be largely up to consumers to price shop between retailers, who may or may not advertise cost savings, but likely will to bring traffic to their stores. It is unlikely price wars will erupt, though.
  • Medicare and Medicaid – These are national programs that can now negotiate with drug manufacturers, and these will be largely unaffected for now. However, there may be isolated cases where the cash price may be lower than co-pays in the “donut hole” in Medicare Part D, which pays for prescription medications. Careful shoppers should keep an eye out for organizations like AARP and Consumer Reports, which will likely track and report these savings opportunities.

Increased Competition: The availability of Canadian drugs can introduce more competition into the pharmaceutical market, potentially leading to reduced prices for a wider range of medications in Florida and potentially other states, but only for cash customers meaning those without healthcare pharmacy insurance benefits.

Safety Impact

  • FDA Approval: The U.S. Food and Drug Administration (FDA) approval ensures that the imported Canadian drugs meet certain safety and quality standards. Therefore, consumers can have confidence that these medications have undergone regulatory scrutiny for safety.
  • Prescription Authentication: The FDA’s involvement includes verifying the authenticity and legitimacy of the imported drugs to prevent counterfeit or unsafe medications from entering the market. This, however, will get complicated with pop-up retailers and online sellers.

Online Purchases

While the approval of Canadian drug imports in Florida allows for the importation of medications from Canada, Floridians cannot purchase Canadian drugs online without restrictions. The implementation of the program and the specifics of how these drugs can be obtained, while regulations and processes are in place, will be a moving target with unscrupulous sellers.

To purchase Canadian drugs in Florida, Florida residents should follow these steps:

  • Consult a Healthcare Provider: Before seeking to purchase medications from Canada, you must consult a healthcare provider. They can assess your medical needs, discuss treatment options, and provide prescriptions if necessary. A prescription is required to purchase prescription medications.
  • Verify Legitimate Online Pharmacies: Research and choose a legitimate online pharmacy based in Canada. Verify the pharmacy’s credentials, including its licensing and reputation by seeking a third-party validation using Google or a similar search engine.
  • Prescription Requirement: ALL legitimate online pharmacies require a valid prescription from a licensed healthcare provider to dispense medications. 
  • Beware of Scams: Exercise caution when dealing with online pharmacies. There are fraudulent websites selling counterfeit or unsafe medications. Stick to reputable sources and avoid suspicious offers. If it seems to be too good to be true, it is.

While the FDA approval allows for the importation of Canadian drugs into Florida, the process of purchasing them online should be must cautiously, following the proper legal and medical procedures. Always prioritize safety and verify the legitimacy of online pharmacies to ensure the quality and safety of the medications you purchase.

Contact us at [email protected] 

Please consider supporting RSDSA with a monthly gift 

RSDSA receives no governmental support (it is time to change that!). We are totally reliant on donations from the CRPS community and from our fundraising events. Thank you for your kind consideration.  https://rsds.org/donate/

For more information or with questions, contact Jim directly at [email protected]

My Transformation from a Life of Pain to Purpose

Written by James Doulgeris, Chairman, RSDSA Advocacy Committee

I have CRPS. The bad kind. Type 1. Full body. With Parkinson’s, severe eosinophilic asthma, mast cell activation syndrome and other nasty autoimmune diseases.

Having spent my entire career at the highest levels of healthcare, I was frustrated. I did well for myself selecting an excellent team of physicians and managing my care myself but was hopelessly overwhelmed because I could not do the same for others. And that is not for lack of trying.

I soldiered on until I realized I was fighting the wrong battle. Fighting an incurable disease that gets worse over time against an apathetic and often ruthless healthcare system and uncaring government is a dead end – literally.

An epiphany helped me to realize that fighting for a purpose changed my life. When Jim Broatch, RSDSA’s Executive Director, recruited me to chair the Advocacy Committee, it all came into focus. Instead of dreading each new day, now I cannot wait to get to work. The pain is still there. So is the fatigue. So are the limitations but they are motivations to work harder. I became a warrior with five major initiatives, and I invite you to transform your life by joining us in this important work:

  1. 1. Bringing drugs like ketamine that bankrupt so many of us or are simply out of reach today for so many on label with standard protocols so insurance will cover the cost and our pain will be better controlled. 

  1. 2. Organizing physical and virtual support groups with standards and resources available to everyone.

  1. 3. Partnering with a company at the cost of less than $100,000 to screen over 10 million people for CRPS using AI to start early treatment when it is most effective is within our grasp. It just needs funding. Let’s go and get it so we can turn ten million into 300 million

  1. 4. Launching an awareness and educational program to battle bias, ignorance, and mistreatment that so many of us face daily that resulted in a $261 million award to the Kowalski family from Johns Hopkins All Childrens Hospital in the Take Care of Maya case is just a large grant away. We need advocates to urge our community to lobby congress to fund it.

  1. 5. Getting the resources to find a cure using precision medicine. Using National Institute of Health numbers, CRPS costs over $62.7 billion annually while a potential cure is only $150 million away. The initial US House of Representatives reaction was enthusiastic. We need to bring this home as a team.

No one is going to do these things for us, but we can do them for ourselves. We overcome grinding pain and challenges every day. We can change that! Join us by transforming that pain warrior in you to fighting to lessen the pain, spare ourselves and others from bias and ignorance in the medical community through awareness and education and doing our best to find a cure. Make each day one to look forward to. Not every day will be a good day but accomplishing just one thing allows you to live a life of purpose and fulfillment.

Take your first step by contacting us at [email protected]

Our best wishes for a happier and purposeful New Year.

Jim and the Advocacy Team

Please consider supporting RSDSA with a monthly gift 

RSDSA receives no governmental support (it is time to change that!). We are totally reliant on donations from the CRPS community and from our fundraising events. Thank you for your kind consideration.

For more information or with questions, contact Jim directly at [email protected].

No One Deserves to Live a Life in Pain

Written by Alejandra M. Cervantes for the RSDSA blog.

How and when did you develop CRPS/RSD?

I was diagnosed with CRPS three years ago, in October 2020. My CRPS developed through several injuries such as different ankle sprains and a fracture in the fibula. I was treated by an Orthopedic [doctor] as it all seemed it was an orthopedic problem. I wore casts, boots and received more than 150 physical therapies. None of the above helped me solve my problem, on the contrary, they triggered the nerve, and I began to develop sensitivity in my left ankle. As time went by the pain began to worsen, and started to expand through the left side of my body. I visited numerous Orthopedic Doctors, and they did not understand what the problem was because I tried every orthopedic treatment possible and nothing solved the problem. Later I learned that CRPS is not an orthopedic problem, it is a neurological problem, therefore nothing was minimizing the pain. 

What has daily life been like since your diagnosis?

My mother decided to visit a doctor in the United States instead because my pain got worse with time. I was diagnosed at the Baptist Hospital in Miami, Florida by Dr. Christopher Hodgkins an Orthopedic Surgeon who specializes in foot and ankle. After the first visit he ordered another MRI, (I had done about five of them at home) and when the results came back, he immediately diagnosed me with CRPS and told us that it was a neurological condition and not orthopedic.

First he referred me to aqua therapy. I did 12 sessions, but they did not help, so then he referred me to Dr. Howard Popp who changed my life forever. Dr. Popp is a Pain Management specialist who focuses on patients with CRPS.  

After I was diagnosed with CRPS, my life changed forever. I felt peace because after suffering from this terrible pain and frustration for such a long time and not knowing what was happening to me, I finally received a diagnosis and was certain that my pain was real. This diagnosis challenged me physically and mentally. I stopped playing soccer which was something I loved and my daily life changed since the medication I had to intake to minimize the pain was a high dosage. Dr. Vivian and Dr. Howard Popp understood my pain and frustration and during the first visit they told me that they would do everything that was in their hands to help me live a normal life free from pain.  

What is one thing you wish those without CRPS/RSD could understand?

This condition affects your mental health tremendously; the pain is terrible. There are some days where you wish the worst because the pain is too much to handle. This condition is also called “the suicide disease” because of the high rate of people committing suicide due to the pain. 

What advice would you give to newly diagnosed Warriors?

Some advice I would give to newly diagnosed warriors is to stay strong. You are not alone. I understand how painful it can be and you feel that your life is over but we are all in this together. The fact that you can get out of your bed is already a WIN. Seek not only for medical help but mental health because you will need it as well. Not everyone is going to understand your pain and that is okay. There is light at the end of the tunnel. Life and pain will eventually get better. You just need to be with the right doctors, follow their instructions and keep praying for this battle to end. 

What encouragement would you give to Warriors who have had CRPS/RSD for many years?

As someone who was diagnosed with CRPS three years ago, I encourage you to find the doctors that will make your pain disappear, but also find other activities that will help you mitigate the pain; swimming, for example. Soul cycling has helped me a lot. Your mind, body and soul are connected, therefore in order for your physical health to be good your soul and mind should be in tranquility. Don’t let this condition take your life away. You are here for a reason and you deserve all the good things in life with or without CRPS or any other condition. 

What activities or treatments have helped you find temporary or long term relief?

When Dr. Popp first saw me, he suggested to do nerve blockages. Since nothing was working my mom and I decided to give them a try. The first nerve blockage took the pain away for two months. Then I had a second one and it only took the pain away for two weeks. The problem with CRPS is that if you don’t treat it right away the pain can continue to expand or you can even start to experience it on the other side of your body. Since the nerve blockages didn’t work for me anymore, my doctors suggested to start medicine. The medicine intake was a high dosage, but since I couldn’t tolerate the pain, we were hoping the dosage would work, and it did work for about three months. Unfortunately, after that my pain began to get worse and worse. Some days it hurt to walk and I began to have muscle atrophy. I started with acupuncture, and it relieved the pain for a little while, but it came back within a day. 

2022 was the worst year for my condition. I could not tolerate the pain, and it was affecting my mental health. This wasn’t life for me anymore and therefore I took a decision that changed my life forever. 

The only option left for my pain to be reduced was the implant of a neurostimulator. This is a device, such as a pacemaker that goes in your spinal cord and it delivers mild electrical signals to the epidural space near your spine through one or more thin wires, called leads. Not all CRPS patients are eligible for this surgery, therefore a trial must be done before, and if your pain is reduced by 80%, then you are eligible. After my trial, I could barely feel any pain. Therefore, I decided to get the neurostimulator implanted.

I had my surgery on March 29th, 2023 and I couldn’t be more happy and grateful with my decision. Although this surgery changed many aspects of my life I get to live a “normal life.” I get to go bed without pain, I get to walk without any stiffness or pain and above all I get to live a life without pain because no matter what type of pain one suffers, no one deserves to live a life in pain. 

Anything else you would like to add? 

To everyone fighting against a medical condition, YOU ARE NOT ALONE. Take your condition in, fight with all your soul against it and win it. You were given that condition in your life for a reason and although the countless nights and days of pain may seem infernal, you were born for a reason, and you deserve to stay here. 

The scars we carry represent who we are, where we’ve been and where we are going. We are entitled to be Warriors since our first cry. Never ever give up. That should not be an option.

Connect with Alejandra via Instagram at @alejandracervantesh.

Please consult your physician for personalized medical advice as individual outcomes may vary. RSDSA does endorse one specific type of treatment. Please visit https://rsds.org/research/treatments to learn more.

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.

Please consider supporting RSDSA with a monthly gift 

RSDSA receives no governmental support. We are totally reliant on donations from the CRPS community and from our fundraising events. Thank you for your kind consideration.

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!