CRPS and Denial: What is Reality?

Written by CRPS Warrior Marti Ann Ramirez for the RSDSA blog.

Does this sound familiar? You were injured. You were supposed to heal. When you didn’t you went to the doctor expecting answers. After all, they spent years in medical school, so they should know how to diagnose and treat you. That is what we expect from “reality.” Right?

Instead, you were told you can try this or try that, but there is no cure. This pain? You are supposed to live with this pain?

Did you want to scream, “Heck no! That’s impossible!”? Yet, that is your new reality, and you are supposed to just accept it?

The Cost of Faux Diagnoses

How many doctors did you see before receiving your RSD/CRPS diagnosis? Most of us saw at least one before we were properly diagnosed. That one didn’t just have zero answers; they carried an implication that the pain was in our heads.

I know that feeling. I will never forget the look when the so-called specialist looked me square in the eyes and said:

“You will be in pain until you realize you aren’t in pain.”

It was cold and brutal.

Trying to navigate that implication? That faux diagnosis began to shape how my family and friends viewed my pain. Instead of offering support and empathy, I felt their critical eyes watching for proof that I was somehow exaggerating or faking it. I lost credibility because of a doctor’s diagnosis.

I often imagine the “What if” scenario. What if, instead of saying it was all in my head, the doctor simply stated he didn’t know what was causing my pain? What if he admitted he didn’t have answers instead of surmising I was faking it? The truth is, his initial diagnosis caused doubt within my support system.

A Relief and a Burden

That’s why the diagnosis of RSD/CRPS was equally a relief and another burden.

● A relief to have a diagnosis that legitimized the burning pain I had been experiencing along with a myriad of bizarre symptoms—a cold limb, swelling, and bedsheets that somehow felt both like a lead weight and sandpaper against my skin. Symptoms the first doctor ignored suddenly mattered.

● A burden because reality had changed. Learning that I would not be going back to my active life meant I couldn’t trust my body. I surrendered myself to my doctors, trusting them because I had no other recourse.

In my experience, denial and doubt were thrust upon me by others and their perspectives of my pain. It created an isolation chamber where I didn’t feel like I had anyone I could truly trust and lean on.

The Many Faces of Denial

Today we use the term Medical Gaslighting to describe the experience of doubt that was cast around me. Others with RSD/CRPS might experience this differently. They might respond to the diagnosis with fight-or-flight behaviors; continuing to look for another doctor in hopes for different answers, refusing therapies because they are already in so much pain, declining to use assistive devices, pushing too hard or afraid to move their body at all.

Another example of denial is in how we talk about our pain. When I tell a concerned friend that “I’m fine,” I am creating a distorted reality that undermines the physical and emotional toll of my pain. Maybe we believe we are trying to minimize our pain for our loved ones’ comfort. Denial becomes our mask because explaining reality is scary when we don’t know how it is going to be received.

The hardest doubt is the one where we cannot imagine being able to live a full and meaningful life with this pain. Receiving a diagnosis of RSD/CRPS is a roller coaster ride. The diagnosis begins a new cycle as our hope of becoming pain-free and returning to our old lives collides with this new reality.

This is where many of us firmly enter the denial stage of grief—not because we don’t believe the diagnosis, but because we don’t want to believe what the diagnosis means for our life.

Finding Something Tangible: The Power of Journaling

Being doubted by others is hard enough, but second-guessing your own body’s ability to get out of bed and go about your day? That is why this is so hard.

Learning to live with this pain means we need something tangible to help us connect with our new reality. I am a firm believer in journaling. The act of putting it on paper (so to speak) helps me focus my thoughts. Through it, I can:

● Track my symptoms and plan my day

● Express my frustrations and know myself more deeply

● Hold myself accountable while practicing grace

● Identify thresholds for pacing: See where I can aim for 1%, push for 10% more, or recognize when I need to pull back

Overall, it allows me to see my progress. Journaling is a tool that helps me see my reality more clearly. What if that clarity can be a stepping stone to help you across the bridge as you learn to discover how to live with chronic pain?

Accessible Alternatives to the Notebook

Are you interested in exploring journaling but need more options than just grabbing a notebook? If dyslexia or pain in your hands and arms makes the traditional pen and paper frustrating, you can still partake in this tool! Consider these alternatives:

● Text Messages: Use your phone to send yourself quick text notes throughout the day. This is really helpful for brain fog too!

● Voice and Video Memos: Record a quick video on bad days to remember exactly what you need to tell your doctor. On good days this tool serves as a reminder to your future self that brighter days are possible.

● Pictures: Sometimes a picture really is worth 1,000 words. Make a commitment to start taking pictures daily or weekly. Let them tell the story of your life.

I love being able to look back and see how many more good days I actually had! This helps me compare what I believed I was living in the moment. It is a reminder that I always overcome 100% of my bad days.

A Gentle Reminder

As you learn to manage your feelings of denial and doubt, I want you to remember to be kind to yourself. You are not alone. Every CRPS Warrior has had to face their own version of this reality.

What is reality?

Reality is that your life has changed.

Reality is that this process takes time. It’s non-linear and you are actively processing a new life.

Reality is that you deserve grace as you deal with these emotions of grief.

Remember, you don’t have to suppress your emotions. Give yourself permission to process at your own pace.

Removing the mask, wanting to be seen, can leave you feeling very angry.

It’s okay to not be okay.

The Part About CRPS No One Warns You About

Written by CRPS Warrior Marti Ann Ramirez for the RSDSA blog.

After months of living with severe pain, endless doctor appointments, and countless tests, you finally receive a diagnosis: Complex Regional Pain Syndrome (CRPS).

Relief, right? A diagnosis should mean answers. A course of treatment. A plan to get you feeling better and back to your normal self.

Right?

Not exactly.

As you listen to your doctor, begin your own research, and maybe even join a few Facebook support groups, you may experience something unexpected: a sharp gut punch of hopelessness.

Did you hear people talking about learning to live within their “New Normal”? Did you feel instant rage? Maybe you wanted to scream, cry, or eat an entire pint of ice cream?

I get it.

Living with pain every day is not normal—unless you live with CRPS. That is exactly why the phrase can feel so triggering. We cannot imagine how something this painful could ever feel normal. The phrase “New Normal” helps us explain the identity shift that happens when life turns upside down.

At the same time, we are grieving someone we loved deeply: the person we were before pain changed everything. Yes, you are allowed to love who you were and grieve that loss.

  • The person who got out of bed without hesitation.
  • The person who got dressed and moved through the day without calculating energy levels or pain consequences.
  • The person who RSVP’d to a wedding without wondering if a pain flare would make attendance impossible—or whether the vibrations from the music would trigger one.
  • The person whose career path felt clear.
  • The person whose relationships felt easier.

Here is something your doctor may not have told you:

You are allowed to grieve.

Grieve the life that changed. Grieve the routines that once felt effortless. Grieve the career you lost or had to pivot from. Grieve the relationships that became strained under the weight of chronic pain.

Give yourself permission and time to move through the denial, anger, the endless “what ifs” and depression so you can eventually emerge into acceptance.

The Struggle with Acceptance

Part of what makes the phrase “New Normal” so painful is the struggle before we get to the acceptance phase. The idea of acceptance feels impossible in the beginning. Accepting the normality of pain can sound toxic. It feels dismissive of the whole experience.

Honestly, who wants to accept the possibility of living with severe pain for decades?

Yet, I am here to tell you something equally important:

It is possible to build a meaningful life again.

I have lived with RSD/CRPS since 1995. I was only 17 years old, and my pain was often dismissed with comments like, “It can’t be that bad.”

Over time, I learned something important: living with pain is not normal, but a full and meaningful life is still possible in spite of the pain.

The phrase “New Normal” is not about giving up who you were. It’s about adjustment, about learning how to bridge the gap between what was and what is.

With pacing, a regulated routine, self-compassion, and acceptance, you can find a balanced normal.

Rebuilding the Bridge Through Hobbies

How do you begin? One thing that helped me was rediscovering hobbies.

They are no longer just leisurely pastimes. Instead, hobbies became part of that gentle bridge between who I was and who I was becoming.

Journaling, music, painting, gardening, crafting, reading, adaptive exercise, or even cooking—these activities can bring moments of purpose and joy to hard days.

What are my hobbies?

  • Plants. The regular care, watering and simple pleasure of watching them grow gives me so much joy and purpose. The natural process of a plant is a metaphor for learning how to pace without competition.
  • Cooking. I have told my husband that it is a meditative experience for me. I have adapted my kitchen and recipes. Learning to slow down and enjoy the process, simmering, tasting and being present in the moment.

Hobbies help to give me purpose on the days when my pain is mild and distraction when my pain is flaring. They built a rhythm that kept me moving when life seems impossible. Your hobbies can quietly support you as you move through the grief process.

More importantly, hobbies quietly taught me one of the most valuable skills in living with CRPS: pacing. Learning when to pause, rest, and return without guilt became part of the practice.

Little by little, I began reconnecting with the spark of myself I thought I had lost. I stopped trying to return to who I had been. After 30 plus years it’s not so much a “New Normal” as just my normal life living with CRPS.

My hope is that you will find power in reclaiming your identity—not just as someone surviving CRPS, but as a Warrior. If you need help just reach out. We are a strong Warrior Community ready to support, encourage and guide you through the hard days.

AI Disassembled: How to Use It Effectively When You’re Researching CRPS

Written for RSDSA by Erika Warren – CEO & Co-founder of Inciteful Med

If you have CRPS, you know what it is to not be believed. Your pain rates higher than cancer pain on the McGill Pain Index, and yet “out of proportion to the injury,” the phrase written into the diagnostic criteria, is also the line that gets you dismissed in exam rooms and sometimes at home. So I understand why so many people in this community, and other chronic and complex cases, turn to AI. About one in three Americans now use AI chatbots for health information, and when the health system makes you fight to be taken seriously, a tool that answers instantly is a relief.

I’m not a doctor, I’m a technologist. I built research tools used by academics and librarians, and it took becoming a patient and caregiver myself to see how few reliable ones exist for the rest of us. Most AI media coverage is all warnings and no education. So consider this your cheat sheet: understand how AI works, question it, and use it wisely.

Most AI is a language model

When people talk about AI, they almost always mean a specific category of AI called Large Language Models (LLM) like ChatGPT, Claude, Gemini, Perplexity. An overly simplified way to think of an LLM is to think of it as a sophisticated autocomplete. It responds to your prompt by predicting the next likely word from statistical patterns in its training data. And its training data is vast – basically the entirety of the internet, copyrighted materials, social media, open access journals and articles. The more content the model has, the better pattern recognition and predicting it can do.

A simple example of how probability models work

That means LLMs:

  • Don’t look anything up by default, and can’t reason or verify.
  • Have no built-in sense of true versus false.
  • Guess fluently and confidently.
  • Cannot create anything “original”. Everything is a derivative of other content.

In the AI world we say hallucinations are a feature, not a bug: confident guessing is simply what a probability model does.

“Pretty good” is exactly the trap

Knowing this, the answer isn’t “never use ChatGPT.” On a lot of general questions, today’s models are right more often than not. But “usually right” is a different standard when it’s your body, and the failures don’t announce themselves. A wrong answer arrives in the same reassuring voice as a right one, and it is not easy from the outside to tell which is which. So the move is simple: use LLMs for what they’re good at, and don’t use them for what they’re bad at.

Great for:

  • Translating jargon: What does “allodynia” or a confusing clinic note actually mean? Or ask it to explain the Budapest Criteria in plain language. It is very likely that this general information is well-referenced in the training data.
  • Summarizing: With language mastery, summarizing and translating is an LLM superpower. Use them to convert dense material into something you can understand.
  • Prepping for appointments: Generative thinking here helps you. An LLM is likely to suggest common questions that others ask, which may give you ideas of your own. An example might be, “Help me write five clear questions for my pain specialist.”

None of these depend on the answer being factually correct. They’re about understanding language, which is where LLMs shine.

Do not rely on LLMs for:

  • Anything time-sensitive or current: Models have a knowledge cutoff and may hand you outdated thinking as current. For instance, they may reference sympathetic nerve blocks as a definitive diagnostic test or a cure, an idea the field has moved away from in the last few years.
  • Facts, stats, and citations: An LLM will confidently produce “76% of patients improved,” or even cite a study that doesn’t exist. Don’t use a plain LLM for research.
  • Reading your data: Hand it a lab table and it can quietly swap a value. It looks accurate, but unless you can verify it, be cautious.

There’s no accountability built in. If it’s wrong, the consequence lands on you and how you act upon the information. You and your doctor are the verification step.

Not all AI is a language model

This is the part almost no one explains, and the thing I most want you to remember. Some AI health tools aren’t guessing from memory, they’re retrieval tools, and they work in a different order:

  1. 1. Your question hits a search index over a curated library of real documents – not a model’s memory, not the open web.
  2. 2. Actual papers that match are pulled from that library. They exist; they aren’t generated.
  3. 3. Then a language model does the one thing it’s good at – reading and summarizing – working from the documents it retrieved.

The industry calls this RAG (retrieval-augmented generation). It’s a real improvement: answers are anchored to sources you can theoretically open and check, and outright fabrication drops sharply. But it isn’t magic. A retrieval tool can still misread a study, overstate what it found, or land on the wrong source when the right paper isn’t retrieved. Better, not perfect – you still verify. That’s true of every tool here.

A few worth knowing:

  • Consensus, Elicit – built for researchers working across the academic literature and different domains. These tools are not medicine-specific.
  • Open Evidence – built for clinicians; limited access to verified medical professionals. Close to 60% of clinicians now report using Open Evidence to look up information.
  • Inciteful Med – the one my team built specifically for patients and caregivers, referencing PubMed, ClinicalTrials.gov, and FDA FAERS data.

What matters more than which you pick is that you can tell this whole category apart from a chatbot.

The catch: “deep research” isn’t enough

The popular chatbots now do a form of retrieval too – ChatGPT search, Perplexity, Gemini, all have “deep research” modes. That sounds like the same thing as research-specific tools, but unfortunately it isn’t. They retrieve from the open web, where a clinic’s marketing page and a peer-reviewed trial look identical. RAG is a method, not a guarantee. What a tool retrieves from is the variable that matters. An open-web retriever is a better Google. It is not a reference librarian handing you the vetted peer-reviewed literature.

Three questions for any health tool

You don’t need to memorize the mechanics. You need three questions:

  1. 1. What’s the data source? A model’s memory, the open web, or a curated database of peer-reviewed research? This one question separates most of the good from the risky.
  2. 2. How transparent is it? Can you see the sources and dates, and click through to verify? If you can’t check it, don’t bank on it.
  3. 3. Who’s paying for it? The business model tells you whose problem the tool was built to solve. Free, subscription, ad-supported – none is disqualifying, but incentives shape a product and its answers, most often through what gets withheld. A tool provided from a health system has liability to manage, so it may be slower to cite emerging research. Open Evidence runs on pharmaceutical advertising, which keeps it free for physicians but leaves open questions about how pharma may shape what’s retrieved, and in what order, as the product evolves.

Run any tool through those three and you’ll have a better idea of how much to trust it for your use case.

Patient education facilitates collaboration

None of this is about turning patients into amateur doctors. It’s about closing a gap. CRPS patients get dismissed because of an information gap: the clinician has the literature and the vocabulary; you have the pain and no easy way to push back in terms the system recognizes or respects. The right tools narrow that. There’s a real difference between “I read online that…” and walking in with an actual study you can cite and an informed question. One is easy to wave away, the other earns you a real conversation.

Medical and AI literacy together are a kind of superpower: not a machine that tells you what to think, but access to what’s actually known, explained in a way that enables you and your clinician to use judgement. It doesn’t replace your specialist, but rather makes that relationship stronger, more personalized, and collaborative.

—

This reflects my own opinion and experience building research tools, not medical advice. Decisions about your care belong with you and your specialist.

Erika Warren is co-founder and CEO of Inciteful Med, a tool that helps patients and caregivers search peer-reviewed research and get answers cited to the studies. Inciteful Med runs on the same engine as Inciteful Academic, a forever-free research platform cited in over 100 peer-reviewed work across dozens of institutions and countries.

WMBF News: Dozens gather in Conway to walk for CRPS awareness

Reposted from WMBF News

CONWAY, SC (WMBF) – More than a dozen people gathered at the Conway Riverwalk Saturday morning to raise awareness for complex regional pain syndrome.

CRPS is a chronic disease that typically develops after an injury, leaving those affected in pain.

It outranks childbirth, kidney stones and amputation of a limb on the McGill Pain Scale.

Saturday marked the seventh annual nationwide RSDSA Walk for CRPS. However, this is the first time organizers put together a walk in the Grand Strand.

Organizer Kira Kordiak said it was amazing to connect with others going through the same thing,

“It was special,” Kordiak said. “Half of us didn’t event know each other today until today meeting. One gentleman out here has never met anybody with this disease and was like I just need somebody to talk to. Now he’s met us and now he can connect and stay connected.”

Kevin Caldwell said he’s mainly bedridden and only leaves the house for appointments after doctors diagnosed him with CRPS in 2008 after a car wreck. However, Saturday he found the strength to attend the walk and meet with people like him for the very first time.

“This is truly my first time to ever meet anyone who has CRPS and it’s amazing to hear their stories,” Caldwell said. “I like to share my story, but today I’m listening, trying to listen more to other people’s stories and try to understand where they’re coming from and what helps them and what doesn’t help them.”

Currently there is no cure for CRPS and the group raised more than $1,200 for research exceeding their goal of $500. The Myrtle Beach Pelicans are partnering with the group for a game on Aug. 23. Five dollars from each ticket purchased through a special link will go toward CRPS research and education.

You can buy tickets by clicking here.

Five Minutes That Changed Everything

Written by Mia Lane for the RSDSA blog.

My daughter was just 13 years old when she developed Complex Regional Pain Syndrome.

It began in late February 2014 with what seemed like a simple accident. She slipped on a puddle of water on the kitchen floor and injured her right foot. At the time, we had no idea that this minor incident would mark the beginning of one of the most challenging journeys of our lives.

What made her case truly extraordinary, however, was the speed of her diagnosis. Our general practitioner recognized CRPS almost immediately, diagnosing her within five minutes. In hindsight, and after everything I have since learned about CRPS, I realize how rare this is. Many patients around the world go undiagnosed for months, even years, enduring unimaginable pain without answers.

The suffering caused by CRPS extends far beyond the patient. Watching a loved one endure such intense, relentless pain is deeply distressing. Traumatizing, even. As a caregiver, the helplessness you feel, knowing there is little you can do to ease their suffering, is something that cannot truly be put into words.

We live in a coastal city in South Africa, and I can say with complete gratitude that my daughter received exceptional medical care. Our doctor worked alongside a physiotherapist within the same practice, and treatment began within 24 hours of her diagnosis.

Her medical team consisted of just two individuals: a general practitioner and a physiotherapist. They were not specialists in CRPS, but they were dedicated, compassionate, and willing to go the extra mile. Researching, adapting, and committing themselves fully to her recovery.

From the outset, we made a conscious decision regarding her treatment approach. While medication was prescribed, my daughter, remarkably at just 13 years old, was determined not to rely on it entirely. Together, we chose a balanced approach: using medication in moderation, while focusing primarily on holistic and rehabilitative therapies.

Because of her age, she was able to actively participate in her own care, communicating her pain and progress clearly – something that proved invaluable throughout her recovery.

When treatment began, her pain levels were at a 10 out of 10. Her recovery plan included a combination of therapies, such as (but not limited to):

– Graded Motor Imagery (GMI) (Later during treatment, when pain levels dropped below 10/10)

– Mirror therapy

– The use of a TENS machine (also introduced later, once pain levels had decreased)

– A balanced, nutrient-rich diet – an essential component of healing

As expected, our daily lives were significantly impacted. She relied on crutches and was initially unable to bear any weight on her foot. Even the sensation of a sock touching her skin was unbearable, let alone wearing a shoe.

Explaining her condition to others (especially friends at school) was incredibly difficult. How do you describe something as complex (pun intended!) as CRPS to someone who has never heard of it?

The nights were the hardest. I would hear her quietly crying, knowing she was in excruciating pain. I often couldn’t even sit beside her on the bed, as the slightest movement of the mattress would intensify her discomfort. The sense of helplessness in those moments is something I will never forget.

And yet, despite it all, she recovered.

After approximately five months, my daughter reached remission. I firmly believe this was due to the combination of early diagnosis, a dedicated medical team, and most importantly, her own unwavering determination. She was resolute in her goal to reclaim her life.

Then, in August 2018, almost exactly four years after reaching remission the first time, CRPS returned. She was 17 at the time. But this time, we were prepared.

We understood the condition, recognized the symptoms, and immediately implemented the same treatment approach. By the end of September, going into October 2018, she reached remission once again.

Today, my daughter is a thriving young adult, living a full and pain-free life. She is a qualified personal trainer, holds a certification in nutrition, and has recently completed her studies in sport psychology. Her journey is one of resilience, courage, and hope. And that is the message I want to leave you with:

There is hope. Remission is possible. With the right medical support, early intervention, and determination, recovery can happen.

I share our full story in my e-book, Five Minutes, published under the pen name Mia Lane. It is currently available on Amazon. The cost is under $6 or free to read in Kindle Unlimited.  A paperback version is also coming soon. The book also includes resources for those seeking reliable CRPS support, particularly in the United States.

If you would like to follow my journey, you can find me on Instagram or by reaching out via email at [email protected].

Ketamine-Assisted Therapy: A New Paradigm for CRPS Treatment

Written for RSDSA by Benjamin Mati, MD – Owner & Medical Director of Horizon Healing

Complex Regional Pain Syndrome (CRPS) is a partially understood condition that can profoundly affect the physical, emotional, and spiritual quality of life of those who suffer from it. Anxiety and depression are often intertwined with myriad physical symptoms, creating a complex constellation of suffering.

While the standard of care involves a multimodal approach—ranging from neuropathic pain medications and nerve blocks to spinal cord stimulation—treatment failure remains very common. Ketamine has emerged as a medical whose unique properties show potential for treating both the physical and non-physical symptoms of CRPS.

What is Ketamine?

Ketamine is an FDA Schedule III medication, placing it in the same class as Tylenol with codeine. Known as a “dissociative anesthetic,” high doses temporarily reduce the brain’s awareness of the senses, creating a dissociation between mind and body.

Since the 1970s, it has been a staple in emergency medicine, anesthesia, and hospital medicine. It is considered so safe and effective that it is the World Health Organization’s (WHO) Essential Medicines List for all health care systems. Since the late 1990s, research has shown it to be a rapid, effective, and safe therapy for depression, PTSD, anxiety, and pain disorders. While these uses are “off-label” (not officially sanctioned by the FDA), they are allowed and supported by studies indicating safety and efficacy.

How Does Ketamine Work?

The human brain is complex, and we are only beginning to understand how substances interact with consciousness. However, we know that Ketamine acts on many receptors and areas of the body and brain. One important action is as an N-methyl-D-aspartate (NMDA) receptor antagonist which seems to do several things:

  • Releasing the Brakes: Essentially, it “takes the foot off the brakes,” stopping brain cells that usually inhibit activity and allowing specific brain cells to become more active.
  • New Connections: This increased activity can create new connections between brain areas. Ketamine stimulates the growth of brain cells and enhances neuroplasticity—the brain’s ability to change its structure and connections.
  • Network Reset: It appears to turn down activity in the “default mode network” while promoting connectivity elsewhere

For CRPS specifically, ketamine decreases the activity of inflammatory cells and pain centers in the brain, interrupting the feedback loops associated with pain interpretation.

Methods of Delivery

Ketamine can be delivered in several ways, each with unique characteristics regarding onset and depth of experience.

MethodAbsorptionSetting & Description
Intravenous (IV100% (Direct to vein)Medicalized Setting: Requires a tiny catheter, continuous vital sign monitoring, pumps, and tubing. Common in hospitals and pain clinics.
Intramuscular
(IM)		93%Therapeutic Setting: Injection into the muscle (usually the shoulder). No need for pumps or IVs, allowing for a more therapeutic environment.
Mucous
Membranes		25–30%Oral/Nasal: Absorbed through the mouth or nose. Requires a higher dose for a similar effect compared to IV.

Ketamine Therapy vs. Ketamine-Assisted Therapy (KAT)

It is important to distinguish between two different models of care.

  • Ketamine Therapy (The Biomedical Model)
    • This model views ketamine primarily as a pharmacological intervention for “disorders”.
    • Focus: Treating symptoms and improving brain function
    • Limitations: It often assumes the mind and body are separate and may overlook social, emotional, and spiritual dimensions
    • Support: Often offered with minimal or no therapeutic support, and practitioners may lack specialized training in psychedelic-assisted therapy
  • Ketamine-Assisted Therapy (KAT)
    • KAT draws from healing traditions that prioritize self-discovery and personal agency.
    • Focus: Ketamine is viewed not as a cure, but as a catalyst for accessing inner healing resources.
    • The Container: Providers are usually licensed professionals trained in creating a safe “container” for the experience.
    • The Process: Includes preparatory sessions to lay a foundation and integration sessions to help clients incorporate insights into daily life over weeks or months.

Ketamine for the CRPS

NMDA receptor overactivity is thought to play a key role in central sensitization, a process where the nervous system amplifies pain signals. By dampening this pathway, ketamine may help “reset” abnormal pain signaling. Current research suggests that ketamine therapy decreases pain symptoms in those suffering from severe CRPS. However, most studies focus on the biomedical IV model, using pain scores as the only endpoint.

Ketamine-Assisted Therapy seeks to meet patients where they are—addressing physical, emotional, psychological, and social symptoms simultaneously. While ketamine addresses physical symptoms, KAT does not hold that there is something to “fix”. Instead, it helps uncover new perspectives and reveal habitual ways of thinking. With the support of trained staff, KAT provides more than just medicine; it creates a holistic healing environment.

Learn More About the Complex Regional Pain Syndrome-Relief and Improvement Study for Efficacy

This is not RSDSA’s study. Please direct study questions and comments to [email protected] or visit crps-rise.com.

At RSDSA, we want to keep you updated on research that may help improve treatment and awareness of Complex Regional Pain Syndrome (CRPS). We are excited to share news about a new trial called CRPS-RISE (Complex Regional Pain Syndrome-Relief and Improvement Study for Efficacy).

What is CRPS-RISE?
CRPS-RISE is a clinical research trial testing an investigational medicine called neridronate. The trial will help researchers learn whether this medicine can help reduce pain in adults with CRPS Type 1 (CRPS-1). The trial is run by Ambros Therapeutics, a clinical-stage biotechnology company based in Irvine, California.

What is neridronate?
Neridronate is a bisphosphonate, a type of drug that affects how bones are formed and broken down. It is “investigational”, meaning it has not been approved by the U.S. Food and Drug Administration (FDA). It can only be used in clinical trials like this one (except in Italy, where doctors already use it for CRPS-1). Because CRPS-1 is a rare disease and there are no approved medicines in the U.S., the FDA has given neridronate for CRPS three special designations: Orphan Drug, Breakthrough Therapy, and Fast Track. These designations mean that FDA recognizes the importance of developing treatments for CRPS.

Who Can Join?
CRPS-RISE will include about 270 adults who have CRPS-1. To join this clinical trial, you must:

  • Be 18 years or older
  • Have the “warm subtype” of CRPS-1, meaning the affected limb is red, warm, or/and swollen, and
  • Have developed CRPS symptoms within the last 6 months

There are other considerations a trial doctor can discuss with you. Neridronate may help reduce the body’s reactions that cause pain and swelling in the warm subtype of CRPS-1. That is why the trial focuses on certain people with CRPS but not everyone. We are sharing this news so that potentially eligible patients are aware of this trial and have the chance to see if they qualify.

How the Trial Works
This is a “placebo-controlled” trial. This means:

  • Participants are randomly placed into one of two groups (like a coin flip)
  • One group gets neridronate
  • The other group gets a placebo (a substance that looks the same but has no medicine in it)

Participants will receive four infusions through a small tube in the vein over 10 days. There will be a followup period, with the trial lasting up to 18 weeks (4 months).

After the trial, participants who are still experiencing symptoms of CRPS-1 may be able to receive neridronate through an expanded access program. This decision would be determined by your trial doctor and yourself.

Locations and Cost
The trial is expected to open at 60 different sites across the United States. There is no cost to participate, and help may be available to pay for travel to clinic visits.

Learn More
If you want to learn more about participating in this trial, Contact a Site. View a full and continually updated list of active research sites on https://clinicaltrials.gov/study/NCT07210515#contacts-and-locations.

We are hopeful for what this research means for the future of CRPS care!

A Journey of a Thousand Miles Begins With a Single Step

Written by CRPS Warrior Erikka Elsbury. This blog first appeared in the April edition of In Rare Form.

Photo by @aterrormusical.
Used with permission

In 2007, my family and I traveled to New York City for the Achilles Hope and Possibility Walk. I saw the motto, “A journey of a thousand miles begins with a single step,” on the shirts RSDSA had for their team. I quickly knew that quote applied to my life and my journey with RSD/ CRPS.

Just five years prior, at the age of 12, I had been diagnosed with a condition so incredibly painful and debilitating that the average person and physician cannot comprehend it.

I had a very normal, happy childhood. I was surrounded by family, friends, and my dogs. One evening, a friend and I were goofing off when I fell in the hallway of my home and sprained my left wrist. I was accident prone. I had broken several bones and sprained multiple ankles and wrists throughout the years, so my parents and I did not think much of it. My dad helped me wrap it with an ACE bandage, and I went to bed.

The next morning, we had a snow day. It may have been the end of March, but in Ohio, blizzards are still possible! My wrist had turned purple and blue and was becoming increasingly painful. My mom took me to the ER where I was diagnosed with a sprain and sent home with Tylenol and ibuprofen. That night, CRPS set in. Over the next few weeks, I saw orthopedic doctors and hand specialists. Every one of them told us that nothing was wrong. They concluded I was exaggerating the pain for attention.

Living 45 minutes from Cleveland, we had access to excellent hospitals. My mom took me to an orthopedic doctor at the Cleveland Clinic. That day, I was diagnosed with Reflex Sympathetic Dystrophy. He immediately called one of his colleagues in Pain Management, Dr. Michael Stanton-Hicks, who I believe saved my life.

The next morning at 8 a.m., my mom and I met him. After speaking with him briefly, he asked what I had eaten and drank that morning. Since I had only taken a few sips of a hot chocolate, he had me change into a hospital gown and whisked me into a procedure room for a stellate ganglion block. For the first time in seven weeks, I felt relief. I completed a series of three nerve blocks over several weeks, along with physical therapy and medication.

Gradually, my pain decreased and became manageable.

During my sophomore year of high school, I sprained my right ankle and my RSD/CRPS spread immediately. I was registered to attend camp with my youth group and didn’t want to go on crutches, so I forced myself to walk. It probably saved me. While at camp, my foot doubled in size, my spasms returned, and the pain was unbearable. I knew my RSD was back, but I was four hours from home and couldn’t do much.

When I returned, Dr. Stanton-Hicks gave me two options: resume medications or continue swimming on the high school team and use it as physical therapy. I chose the swim team. I became a lifeguard and learned how to hide my pain when I was on my ankle and leg for too long. I maintained an active social life, and for a while, RSD/CRPS didn’t hold me back—until my junior year.

On a particularly cold and snowy day, I crushed my pointer finger in my car door while trying to warm up. On the drive home, I felt the familiar, fiery, shooting pain down my right arm. By the end of the night, my right hand was atrophied. Dr. Stanton-Hicks attempted multiple nerve blocks and even an epidural with a rehabilitation stay in a pediatric rehab hospital to stop the spread, but unfortunately, my RSD/CRPS was here to stay.

I am now in my 30s and have lived over half my life in severe, excruciating pain. At 18, during my senior year of high school, I had a spinal cord stimulator implanted because medication and physical therapy alone was not enough in terms of pain relief. I am currently on my third battery and will need surgery next year to get my battery switched out.

My spinal cord stimulator gave me my life back. I was able to go to college and became a registered nurse. I worked as a floor nurse up until two years ago when I realized my body couldn’t handle it anymore. My RSD/CRPS slowly worsened, and last year I began monthly low-dose ketamine infusions, which help my body and brain reset. It is an incredible feeling to get even a small break when it feels like your body is being assaulted 24/7. It has always been hard for me to describe what RSD/CRPS feels like. I describe the pain as dousing your arm in gasoline and lighting it on fire while lightning bolts shoot up and down your limb. Most people would be bedridden or in the ER with the amount of pain people with RSD/CRPS manage daily, yet we keep pushing through.

Pain is not only physically exhausting but mentally exhausting as well. For a long time, I was ashamed of my condition. I was told not to talk about my RSD/CRPS, so when it returned in high school, many of my friends were shocked to learn I had been suffering for years. I now work full-time and often feel I have more to prove, even though I know that isn’t true. There are days when I wish I could hand the mental burden to someone else.

RSD/CRPS has taught me many lessons. I learned to advocate for myself and others. Despite my condition, I graduated with my nursing degree and currently work in a doctor’s office. As a floor nurse, I made it a priority to advocate for adequate pain control for my patients.

I’ve learned that not everything is as it seems. On the outside, I look like a healthy 30-year-old. No one sees the medications I take daily, my schedule for charging my spinal cord stimulator, my ketamine infusion routine, the multiple medical appointments, or how carefully I arrange my bed just to get a few hours of sleep. Society often assumes pain comes with age—that young people cannot be chronically ill. I am constantly told, “Just wait until you’re older.” People assume I’m healthy simply because I’m young. It took seven doctors and seven weeks for me to be diagnosed. If not for my mom’s insistence, my pain may have been dismissed as teenage attention-seeking. Sadly, I know warriors who waited months or even years for a diagnosis.

I’ve learned that boundaries are healthy. I love helping others. I love family gatherings and having my nephews over. But I’ve had to accept that my health comes first. I used to push myself until I collapsed from exhaustion. Now, I reserve Saturdays as rest days. I sleep in as long as my body allows. I lounge. I binge-watch TV. I’ve learned that I cannot truly enjoy birthdays, holidays, or time with family if I am barely functioning.

From a young age, I learned the use it or lose it philosophy. Dr. Stanton-Hicks explained how important it was to use my affected limbs daily. Now, doing hand isometric exercises when stiffness sets in is second nature. My dog, Oliver, also motivates me to keep moving. We love exploring the beautiful parks near us.

My biggest advice to both new warriors and those who have lived with this for years: educate yourself and advocate for yourself. Though this disease is incurable, new treatments continue to emerge. If you feel unheard, seek a second opinion. I changed physicians last year after feeling dismissed, and I am finally receiving proper treatment and relief again.

Fortunately—and unfortunately—no one truly understands this life unless they live it. That’s why having someone you can talk to is essential. I met several girls through support groups and in waiting rooms. We quickly became friends. I was terrified before my first ketamine infusion, but they reassured me and checked in afterward. We support each other because we understand what the other is going through.

Just remember: none of us are alone.

Do Not Let This Define Who You Are

Written by Jamie Sparbel for the RSDSA blog

How and when did you develop CRPS?

My CRPS started January 3, 2013, or at least that is when I was injured. I was diagnosed roughly about six months later. I was an EMT and I slipped on ice heading into a patient’s house and originally thought I had broken my wrist so I put a cast on my arm. After more x-rays, they determined it was not broken and they put my arm in a soft splint. I went to PT and massage therapy and nothing was working. Soon after, my ortho sent me to a pain management physician. My pain management physician walked in the room and said, “Yes you have CRPS and we need to stop it from spreading.”

What has daily life been like since your diagnosis?

I was a wreck when I was first diagnosed! I was young, just married and did not have any kids of my own yet. I was worried that this would restrict my life going forward. After about a year with CRPS I have learned to live with it. There are days where the pain is so bad I do not talk to anyone. I cry, I take hot showers, and I just want to cut my arm off. Other days the pain is tolerable and I go about my day where I am fine. I have always told myself, “do not let this define who you are.”

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

You will have bad days! This can spread and it will at times be so defeating. But take the good days and remember that yes, this pain is the worst pain you have ever felt, but there is support out there and community that will support each other.

What advice would you give to newly diagnosed Warriors?

Get treatment ASAP. Do not wait! Go get second opinions and fight for your health!

What encouragement would you give to Warriors who have had CRPS for many years?
My CRPS is spreading down my left leg, so I really focus on the good days and what I can do now like spending time with my family, my daughter, and my friends. Sometimes I limp or my arm is in a sling, but I remember that the love I have for everyone is the same love they have for me. I would never wish it on anyone, but I will never let it define who I am, or have anyone remember me like this.

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

I am on medication. I find compression really helps in the winter. I also have a spinal stimulator that I love! Honestly, going to the gym really has helped in a weird painful way, lol. 

Anything else you would like to add?

Stay strong! I know it’s easier to say than to do, but that is what will get you through the bad days, weeks, and years. And don’t forget that it is okay to cry!

If you want to connect with Jamie, feel free to send her an email.

Every Day Is Challenging, but She Tries to Remain Positive

Written by Pennie A. for the RSDSA blog.

Hello my name is Pennie and I help my daughter Jess. She has CRPS Type 2 and we live in Sydney, Australia.

Jess was a dancer and was injured by a dance teacher. She had years of surgeries to try and preserve her hip, but unfortunately at 24 she needed a hip replacement. Six months after the replacement she was not recovering as she should have been so then she needed hip revision surgery for the replacement. This is where our nightmare started six years ago. Six days after the revision surgery, Jess was in excruciating pain in the hospital. Her leg from the knee down was purple and paralyzed.

Soon after, the surgeon took her back to the operating theatre. They found adhesions had formed due to years of inflammation that had crushed and adhered her sciatic nerve to two sections of her pelvis. This damage caused CRPS Type 2. Jess had lost the use of her lower leg.

One year down the track a nerve study showed that the sural and tibial nerves had been killed from the crush injury to the sciatic nerve. Her lower leg would never recover. Jess wanted an amputation with the hope to walk once again. We went to see a world renowned surgeon who performed osseointegration here in Australia as Jess could not have anything touching her leg due to hypersensitivity, so a normal prosthetic over her stump was not an option. The surgeon made it quite clear that the amputation would not take away her CRPS pain, but it would give her the ability to walk again as her leg was necrotic (dying). Jess had a below knee amputation at 25 years old with osseointegration. She can walk only short distances, but that beats being confined to a wheelchair.

Jess has a spinal cord stimulator, a bladder stimulator and can’t control her body temperature. She is in constant pain 24/7. Every day is challenging for her, but she tries so hard to remain positive. CRPS has changed her life forever, but she fights this ugly disease every single day. We both hold on to hope that someday, somehow there will be more that can be done to help her pain.

One of the biggest issues Jess and I find is that people look at her and say how great she looks, but my girl wears an excellent mask. The mask comes off around me and I see the hell she lives every day.

The other thing is extended family. They do not understand how hard each day really is for her and they do not make any effort to find out either which is so hard on us both.

My advice to other newly diagnosed Warriors is to learn all you can about CRPS and ask a lot of questions. Try to stay positive and don’t give up. Hold onto hope and find a pain specialist that will listen to you and understands this terrible, life-altering disease.

Bless you all xx

Pennie – A Carer and Mum