The New Front Line of Patient Advocacy: PDABs and the Trouble with QALYs

If you live with CRPS, you are likely an expert at navigating pharmacy counters and insurance appeals. But there is a new acronym in the healthcare landscape that might determine whether you can access your medication at all: PDABs.

Combined with a controversial metric called the QALY, these boards are changing the way the value of your life—and your relief—is calculated.

What is a PDAB?

A Prescription Drug Affordability Board (PDAB) is a state-level body created to curb rising drug costs. Think of them as a “watchdog” for medication pricing. They review specific high-cost drugs and, in some cases, can set “upper payment limits” (price caps).

While the goal of making medicine cheaper is noble, the method they use to decide if a drug is “worth it” is where the chronic pain community faces a significant risk.

The QALY: Measuring the “Quality” of Your Life

To decide if a drug is “cost-effective,” many boards rely on a metric called the Quality-Adjusted Life Year (QALY).

  • 1.0 QALY represents one year of “perfect health.”
  • 0.0 QALY represents death.

If a patient is living with a disability or chronic pain, the QALY system assigns their life a value less than 1.0.

The Problem: When a PDAB uses QALYs to determine if a pain medication is “worth the price,” the math is inherently biased. Because the system views a year of life with chronic pain as “lesser” than a year of life in perfect health, the “value” of a treatment that extends or improves that life is mathematically downgraded.

Why Chronic Pain Patients Should Be Concerned

Restricted Access: If a PDAB decides a drug isn’t “cost-effective” based on QALY math, insurance companies may stop covering it or move it to a “specialty tier” with massive co-pays.

Discrimination by Algorithm: Using QALYs can lead to “value-based” decisions that discriminate against the elderly and those with permanent disabilities. It suggests that a treatment for someone who will never reach “perfect health” isn’t as worth the investment.

Ignoring the “Patient Voice”: Metrics like QALYs often fail to capture the nuances of chronic pain, such as the ability to return to work, attend a child’s graduation, or simply experience a 20% reduction in daily agony.

What Can You Do?

The good news is that several states and federal advocates are fighting to ban the use of QALYs in drug evaluations, arguing that they violate the Americans with Disabilities Act (ADA).

Self-Advocate: If your state has a PDAB, find out when their public comment periods are. As of late 2025, the following states had PDABs: Colorado, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Ohio, Oregon, and Washington. If your state has a PDAB, you can click here for updates.

Share Your Story: Data points don’t feel pain, but people do. Telling a board how a specific “expensive” medication allowed you to function can humanize the cold math of a QALY.

Support “Quality-Neutral” Metrics: Push for boards to use alternative measures that don’t discount the value of life based on disability status.

Your life is a 1.0, regardless of your pain score. Don’t let a PDAB tell you otherwise.

Lisa Van Allen, MS, PhD is a Pain Psychologist and the Chair of the RSDSA Advisory Board. When she’s not writing for the RSDSA or her own blog, you will find her trying to keep her pups out of the fresh paint on her canvases. 

A Journey To Relief: Tony’s Story


Abbott is an annual sponsor of RSDSA.

Living with complex regional pain syndrome (CRPS) can bring daily challenges as individuals navigate life under the weight of persistent, severe pain. For Tony, his journey with severe pain started when he was diagnosed with rheumatoid arthritis at 19. Despite the physical toll, he built a remarkable career as a top chef at restaurants across the country.

“My attitude was always: Keep moving through [the pain],” said Tony. Yet he had numerous surgeries and fusing procedures to try and control his pain. And nothing really worked.

“After I [had fusion surgery on] my ankle in 1991, I was never really that mobile. I dragged my leg around,” Tony explained.

“If you want to be mobile, cut it off”

Tony heard this unwelcome advice from a doctor, so at age 40 he made the difficult decision to have his left leg amputated below the knee in the hopes of increasing his mobility.

For a while the amputation helped alleviate Tony’s pain. And with physical therapy, he learned how to get around on one leg, even mastering skiing. But 5 years later, he developed severe nerve pain, diagnosed as complex regional pain syndrome (CRPS). That’s when his pain specialist told him about DRG therapy.

Finding a life-changing therapy

Tony initially did a trial period with DRG therapy to see if it could provide some relief. The first day of his trial period, he felt so good that he walked 5 miles around New York City.

“It felt great,” he said. “Up to that point, I had not walked that far in about 5 or 6 years.” Tony then had a permanent DRG system implanted. And he said he’s never felt better. The majority of his nerve pain is relieved, so he’s able to hike again—and even able to go back to skiing. He’s now a ski instructor for disabled people.

“For me, it’s been a life-changing device,” Tony said of DRG therapy. I don’t give up.”

Tony hopes his story can help other people also suffering from CRPS I or Causalgia (CRPS II). “What people need to know is that if you have nerve pain, [DRG therapy] has a huge potential to change the quality of your life,” he said. “For me, it has completely changed the quality of my life.”

What is Proclaim™ DRG Therapy?

Proclaim DRG Therapy is a novel neurostimulation technology that relieves pain at the source by interrupting pain signals at the dorsal root ganglion (DRG) before they reach the spinal cord. The DRG is a cluster of sensory nerve cells that sit along the levels of the spine that researchers have shown to help modulate pain signals from areas of the body where people experience pain. 1 Differing from traditional tonic spinal cord stimulation that has been used for decades, DRG stimulation may be a better choice for those with CRPS I or causalgia of the lower extremities. 2

By focusing electrical stimulation specifically on the DRG pain signals can be interrupted so you don’t feel pain in the same way. Proclaim DRG therapy has been clinically proven to provide significant pain relief, improve physical function, and enhance quality of life. 2*

Eligible patients can trial the therapy to see if it provides meaningful pain relief before committing to a permanently implanted system. 3 To learn more about DRG therapy watch Dr. Kiran Patel’s webinar that covers the nature of pain, common pain conditions, and therapeutic options for pain relief.

ISI

This testimonial relays an account of an individual’s response to the treatment. This patient’s account is genuine, typical, and documented. However, it does not provide any indication, guide, warranty or guarantee as to the response other persons may have to the treatment. Responses to the treatment discussed can and do vary and are specific to the individual patient.

These materials are not intended to replace your doctor’s advice or information. For any questions or concerns you may have regarding the medical procedures, devices and/or your personal health, please discuss these with your physician.

*Quality of life observed in other endpoints in the ACCURATE study

1. Esposito, M., Malayil, R., Hanes, M., & Deer , T. (2019, June). Unique Characteristics of the Dorsal Root Ganglion as a Target for Neuromodulation. U.S. National Library of Medicine. https://pmc.ncbi.nlm.nih.gov/

2. Deer TR, Levy RM, Kramer J, et al. Dorsal root ganglion stimulation yielded higher treatment success rate for complex regional pain syndrome and causalgia at 3 and 12 months: a randomized comparative trial. Pain. 2017;158(4):669-681. doi:10.1097/j.pain.0000000000000814

3. Proclaim™ DRG Neurostimulation System Clinician’s Manual. Plano, TX. 2025.

Risk Information: The placement of a neurostimulation system requires surgery, which exposes patients to certain risks. Complications such as infection, swelling, bruising, and possibly the loss of strength or use in an affected limb or muscle group (e.g., paralysis) are possible. Additional risks such as undesirable changes in stimulation may occur over time. Be sure to talk to your doctor about the possible risks associated with neurostimulation.

Rx Only

Brief Summary: Prior to using Abbott devices, please review the User’s Manual for a complete listing of indications, contraindications, warnings, precautions, potential adverse events, and directions for use. The system is intended to be used with leads and associated extensions that are compatible with the system.

Indications for Use: Spinal column stimulation via epidural and intra-spinal lead access to the dorsal root ganglion as an aid in the management of moderate to severe chronic intractable* pain of the lower limbs in adult patients with Complex Regional Pain Syndrome (CRPS) types I and II.**

*Study subjects from the ACCURATE clinical study had failed to achieve adequate pain relief from at least two prior pharmacologic treatments from at least two different drug classes and continued their pharma- cologic therapy during the clinical study.

**Please note that in 1994, a consensus group of pain medicine experts gathered by the International Association for the Study of Pain (IASP) reviewed diagnostic criteria and agreed to rename reflex sympathetic dystrophy (RSD) and causalgia, as complex regional pain syndrome (CRPS) types I and II, respectively. CRPS II (causalgia) is defined as a painful condition arising from damage to a nerve. Nerve damage may result from traumatic or surgical nerve injury. Changes secondary to neuropathic pain seen in CRPS I (RSD) may be present, but are not a diagnostic requirement for CRPS II (causalgia).

Contraindications: Patients who are unable to operate the system, who are poor surgical risks. Patients who have failed to receive effective pain relief during trial stimulation.

Warnings/Precautions: Diathermy therapy, implanted cardiac systems or other active implantable devices, magnetic resonance imaging (MRI), computed tomography(CT), electrosurgery devices, ultrasonic scanning equipment, therapeutic radiation, explosive and flammable gases, theft detectors and metal screening devices, lead movement, operation of machinery, equipment and vehicles, pediatric use, pregnancy, and case damage.

Adverse Effects: Unpleasant sensations, changes in stimulation, stimulation in unwanted places, lead or implant migration, epidural hemorrhage, hematoma, infection, spinal cord compression, or paralysis from placement of a lead in the epidural space, cerebrospinal fluid leakage, tissue damage or nerve damage, paralysis, weakness, clumsiness, numbness, sensory loss, or pain below the level of the implant, pain where needle was inserted or at the electrode site or at IPG site, seroma at implant site, headache, allergic or rejection response, battery failure and/or leakage. User’s Guide must be reviewed for detailed disclosure.

Comfort, Relief, and Support: A Meaningful Gift Guide for CRPS Warriors

If you’re a CRPS Warrior making a wish list, or you’re trying to figure out the best gift for a loved one with CRPS, you’ve come to the right place!

We’ve spoken to numerous CRPS Warriors over the years about the everyday items they love as well as the gifts they reach for during flares and treatment days. However, we recommend chatting with your CRPS Warrior before making purchases to learn if their CRPS runs hot or cold and to better understand what types of items they cannot bear.

The use of these items is just as unique as each CRPS Warrior, so let us know if there is anything we should add by leaving a comment at the end of the guide!

This is not a sponsored post.

Fuzzy and/or Compression Socks

Many with CRPS try to keep their feet as warm as possible while at home, during work, dog walks, errand runs and everything in between. Fuzzy, cabin, or compression socks are super helpful in achieving this. They also come in so many fun colors/designs. Consider knitted socks for a true custom flair.

Find them at: Etsy | Dollar Tree | Heat Holders

Sweatsuit For Infusion Days

A matching sweatsuit not only saves time when getting dressed for treatment days, but it can also be functional! Consider a sweatsuit with arm access to make infusions and blood draws easier than ever. The sweatsuit can even be used when traveling!

Find them at: Spoonie Threads | Be Well | Walmart

Photo via Spoonie Threads

Warm/Heated Throw Blankets

You can never have too many blankets! Some may also appreciate a wireless heating pad if they need heat concentrated to one area. Consider pairing your blankets with soft pillows, especially for limbs that like to be elevated.

Find them at: Macy’s | Kohl’s | Amazon

Noise Cancelling Headphones

Many with CRPS cannot handle loud noises and prefer to use headphones, especially those that block out surrounding noises. They’re perfect for treatment days and traveling!

Find them at: Bose | JBL | Sony

Coloring and Activity/Game Books

Coloring books are not just for kids! Coloring is such a relaxing activity for high-stress situations. Be sure to throw in some color pencils or markers when gifting a coloring book. For those who may not like coloring, consider brain teaser, crossword puzzle or sudoku books as well.

Find them at: Michaels | Books A Million | Barnes & Noble

Water Bottle with Electrolyte Packets

Staying hydrated is important for everyone, but it’s especially vital for those with CRPS. Proper hydration with water and electrolytes can help decrease inflammation, improve nerve signals, and soothe muscle spasms. Water bottles and electrolyte packets are easy to find and are great for Easter, boo, or burr baskets or as stocking stuffer.

Find them at: Nalgene | Yeti | Liquid IV

Spray on Moisturizer

Spray moisturizers can be helpful for CRPS Warriors with sensitive skin in order to ensure hydration without excess touch. Pro Tip: Select one without extra fragrance!

Find them at: Aquaphor | Vaseline

Oscillating Fan and/or Electric Heater

Some with CRPS have different temperatures in each region of their body which results in needing a heater/blanket in one spot and a fan in another. Consider purchasing a fan that provides the option of evenly distributing air when necessary.

Find them at: Home Depot Fans | Home Depot Heaters

Red Light Therapy Items

While some think red light therapy is just a dermatology fad, it is proven to be helpful for many in pain. Clinical red lights are stronger than at-home tools, but many caps/helmets, masks and panels have been found to help with the pain that comes from having CRPS. If you want a larger option, see if your local tanning salon has red light beds. Be sure to ask about the specs to ensure it’s what you need.

Find them at: Viconor | Swirise

Free Option: Create a Playlist

An easy and free option is creating a playlist filled with your CRPS Warrior’s favorite tunes. They can listen to your playlist during treatment days!

Find them at: Spotify | Apple Music | Pandora

Gym Membership for Sauna Access

Similar to red light therapy, many CRPS Warriors find relief using a sauna. While home saunas may not be an option due to financial or space limitations, finding a local gym with a sauna and obtaining a membership is an easy alternative.

Find them at: Crunch Fitness | LA Fitness

Print RSDSA Resources

Many CRPS Warriors carry medical records and resource documents in their “medical toolbox” for appointments, including RSDSA’s hospital guidelines, dental guidelines, and I Have CRPS Cards. Consider printing copies of these items out for your loved one to save them a bit of ink or a trip to their local print shop.

Find them at: Hospital Guidelines | Dental Guidelines | I Have CRPS Cards

Gift Cards

You can never go wrong with a gift card so the exact items that a CRPS Warrior needs can be purchased. This way, they can buy anything you may have missed such as ACE bandages, Pedialyte, compression sleeves, fleece-lined leggings, hand warmers, and much more.

Find them at: Amazon | Visa.com

Books From Fellow CRPS Warriors

Some with CRPS like to read about the experiences of others, so thankfully we know a few CRPS Warriors who are also authors. Many of their books are memoirs, but some are also filled with poetry and advice for finding hope.

Find them at: Krystal Jones (Amazon) | Amberly Lago (AmberlyLago.com) | Peter Conti (Amazon)

Looking Forward, Together

CRPS is one of the most painful and least understood conditions known to medicine – and because of that, many individuals face their diagnosis feeling isolated, afraid, and unsure where to turn. For thousands of people across the country, RSDSA becomes the first steady source of clarity, community, and hope. It is only through your support we can continue this great work.

This year, supporters like you helped RSDSA:

  • Create resources and education for individuals and families living with this rare condition
  • Provide guidance and community connections for people navigating their CRPS journey
  • Deliver expert-led livestreams, online support, and educational materials to improve understanding and outcomes
  • Increase awareness among healthcare providers and advocates
  • Strengthen national networks so no one must walk this path alone
  • Grow our patient assistance programs

But there is still so much more work to be done.

Because CRPS is rare, individuals often struggle for years searching for clear information, appropriate care, and a supportive community. For more than 40 years, RSDSA has funded research, centralized credible resources, and laid a foundation that many organizations rely on today.

As we look toward 2026, we are committed to doing even more – expanding education, strengthening advocacy, and growing our patient assistance programs, to name just a few. None of this is possible without your dedicated support.

Your year-end gift has a direct and meaningful impact.

Please visit rsds.org/donate to make your year-end contribution today.

Tonko, Miller-Meeks Introduce Resolution on Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy Awareness Month

Bipartisan resolution recognizes rare, painful condition

WASHINGTON, DC—Representatives Paul D. Tonko (D-NY) and Representative Mariannette Miller-Meeks (R-IA) today announced the introduction of a bipartisan resolution designating November as Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy Awareness Month to raise awareness about this rare neuro-inflammatory syndrome and ensure individuals living with this condition have access to early detection as well as safe and effective treatments.

Complex Regional Pain Syndrome also known as Reflex Sympathetic Dystrophy is characterized by persistent, regional pain that is disproportionate to any known trauma or lesion, and is accompanied by sensory, motor, vasomotor, and/or trophic changes in the affected limb.

Rep. Tonko successfully championed the push in Congress to improve visibility and access to treatments for the millions of individuals impacted by a rare disease with his Helping Experts Accelerate Rare Treatments (HEART) Act, which was signed into law in December 2022.

“For the millions of Americans living with a rare or ultra-rare disease, reliable information is scarce and treatment options are even more limited, leaving patients and their families with few paths forward and even fewer reasons for hope.” Rep. Tonko said. “That’s why I am incredibly proud of my work alongside advocates to have passed the HEART Act. This law amplifies the voices of those living with a rare disease as well as healthcare professional who care for them, while also accelerating the development and approval of new treatments. But my work to uplift the needs of those living with these rare conditions is far from over. Today, I’m honored to introduce a new resolution on Complex Regional Pain Syndrome alongside Representative Miller-Meeks and am deeply grateful to all those who have helped raise awareness on this often-overlooked condition. I pledge to continue working to ensure Congress meets the needs of those living with a rare disease.”

“As a physician, I know how devastating Complex Regional Pain Syndrome can be for patients who often spend years searching for answers,” Rep. Miller-Meeks said. “Early detection and access to effective treatment are critical, yet too many Americans face delays, misdiagnosis, or a lack of awareness. I’m proud to join Rep. Tonko in leading this bipartisan effort to shine a light on CRPS and ensure that patients, families, and providers have the tools and support they need.”

The text of the resolution can be viewed HERE.

In a statement, the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) said, “Reflex Sympathetic Dystrophy Syndrome Association (RSDS.org) supports CRPS Awareness as a great step forward in giving comfort and hope to all those afflicted with CRPS. We are deeply grateful to Representative Tonko and Representative Miller-Meeks for their continued commitment to raising awareness. The nature, and even the existence of CRPS, is too little known. Increasing awareness of CRPS will motivate wider education about this painful disease among healthcare professionals as well as among the lay public. It will promote support for those who suffer with CRPS, and it will encourage research into the mechanisms of the disease of CRPS, which will lead to better treatments, and, ultimately, for a cure for CRPS.”

I Never Gave Up

Written by Krystal Jones for the RSDSA blog.

My name is Krystal Jones and this is my story about how my journey started.

Around the age of 15, my left knee started hurting seemingly out of nowhere. It started out with a little pain and then it got progressively worse over the years.

I was diagnosed with CRPS/RSD back in 2014 by pain management doctors, but the cause of my pain was unknown at the time. Therefore, some doctors told me that I didn’t have CRPS because I was “too young” to be going through that much pain. They thought I was crazy and that I was imagining this pain. They said there was nothing else they could do for me. However, I never gave up.

I consulted with various specialists, including pain management doctors, orthopedic surgeons, sports medicine experts, my primary care physician, physical therapists, rheumatologists, neurologists, and a few behavioral therapists to see if I had CRPS. I tried so many treatments including medications and supplements (with a lot of allergic reactions), different types of topicals, ointments, several injections, multiple surgeries and procedures.

After all of the consultations, I suspected that my first knee surgery, an arthroscopic knee procedure on November 2, 2006 to repair a cartilage tear in my left knee, might have triggered my symptoms of CRPS/RSD as the pain in my knee began to get worse after that. I do not know how the tear came about because I do not remember falling and I did not play sports.

Throughout the years, I have faced numerous challenges, yet I have always overcome obstacles. In May 2020, a former primary care doctor diagnosed me with CRPS Type 1 after I experienced severe, disproportionate pain and underwent various tests, including X-rays, CT scans, nerve test (EEG and EMG), physical therapy, extensive family medical history evaluations and blood work.

Daily life is hard because my symptoms vary and affect both of my knees and feet. CRPS has changed my life. Sometimes I feel ok, but then I have tremors in my right arm and leg that come and go. I start stuttering and I have panic attacks. I sometimes feel confused and it’s hard to hold a conversation. I have brain fog and sometimes it’s hard to decide which leg I want to move first. I have throbbing, sharp, and shooting pain in my knees in addition to muscle spasms in my back that come and go. I have burning pains at the top of my feet and in between a few of my toes. I am on disability. I worked for 14 years as a cashier at a supermarket while dealing with chronic pain.

I wish people who don’t have CRPS/RSD could understand that we are asking for support, comfort and compassion as this is what we go through every day. It is not easy and we try our best to push through. This burning, fire, intense pain along with other symptoms is a constant battle. This pain is REAL!

Things that help me get through my journey include praying daily, meditating, reading books, writing in my journal, relaxing, listening to music, adult coloring books and spending time with my family. I also have a permanent Dorsal Root Ganglion (DRG) stimulator implant in my back.

I have been married to my amazing husband for five years now. I do not have any kids of my own, but I do have one bonus son. I have one sister and one brother and through them I have two beautiful nieces and two handsome nephews.

Krystal recently self-published her first book titled Overcoming Obstacles- This Is My Testimony. Feel free to connect with her on Facebook, Instagram, and via email.

Guest Blog: After 20 Years of CRPS/RSD Pain, Relief Has Finally Arrived With Journavx!

Written by Chris Connelly, D.O., CAQOM, MRO (ret) for the RSDSA blog.

Hello. My name is Chris. Actually, I’m Dr. Chris. I have practiced medicine for 32 years.

Guess what else I am? I am an RSD/CRPS sufferer, probably pretty much like you, if you’re reading this blog.

I was fairly certain of what I had, so I went to the doctor to have my diagnosis confirmed. She confirmed it alright. That was 20 years ago. I learned about RSD as a junior in medical school. I knew even way back then RSD was an ugly painful disease. What I didn’t know was how terribly painful RSD can be. I also didn’t know how limited and difficult treatment could be.

RSD and its treatment had exceeded my worst fears. Even a good graphic description of RSD in a book doesn’t do justice to the depth and breath of the terrible pain and life changing consequences that RSD will produce. Only living through the ups and downs of the excruciating pain and disability can a person truly learn the catastrophic effects that RSD will have on them. As bad as I had it, I’ve read about those who have had it much worse, endured more procedures, and had poorer outcomes than I.

I believe a new hope and relief of RSD/CRPS pain has finally arrived. There is a new medicine on the market and it is now available for use. The medicine is called Journavx (suzetrigine) made by the pharmaceutical company Vertex. It is an entirely new type of painkiller not related to any others. Journavx is non-narcotic, non-opioid and not addictive. It has no psychogenic effects whatsoever. It works by the unique mechanism of plugging the hole in the genetically defective sodium ion channels. It is the passage of sodium ions through the sodium channels that accumulate on the inside of the cell membrane that causes pain impulses. When the sodium channels have a genetic defect, they remain totally open letting sodium ions pass freely without restriction or control.

Simply put, Journavx plugs the hole: no sodium ion accumulation, no pain impulse generation, thus no pain.

The technical research that discovered these molecular structures and their functions is truly amazing. The cleverness and hard work of the research scientists is incredible to the point of almost seeming like magic or Star Wars. Neither magic nor space stories, these painkilling discoveries came about through imaginative brilliant scientific minds and relentless hard work. The result of which is a new medicine targeted at CRPS-type pain with very few side effects of its own.

Does it really work? Yes, Journavx really works for me.

How well does Journavx work? Read on and I will tell you.

I am fairly well versed in the technical aspects of the mechanism of action of Journavx including the molecular neurobiochemistry of the structures and their functions. This is all most impressive, but it is meaningless unless the medication actually relieves pain. I can speak for no one but myself. I can honestly state that Journavx has relieved 90+% of my RSD pain from the first day of taking the medicine.

As of this writing, I am on day 20 of Journavx and have little to no RSD-type pain. In my personal opinion, Journavx works very well for RSD-type pain. It works well for RSD-type pain because I must have the genetically defective sodium channels. Journavx plugs the hole.

Don’t expect Journavx to work wonderfully on every and any old pain. It wasn’t designed for that. It was designed for neuropathic pain of the RSD-type and at this, Journavx excels!

For me, well, I’m starting a new life or at least a new chapter in life. No opioids, no fogged brain or constipation, no needles, no blocks, no surgeries and no electrodes running down my spine, I can pretty much do what this septuagenarian body will permit me to do. Of course I have limitations. RSD has ravaged my left leg and body for two decades. I don’t get those years or my youth back. I do get to go on with my life relatively pain free because of Journavx. To me, after 20 years of excruciating agonizing pain, that seems miraculous, but it is actually cutting-edge brilliant science.

It is my fervent hope that all CRPS/RSD sufferers will at least know about Journavx and maybe give it a try. Because it is a very safe medication with few serious side effects, CRPS/RSD sufferers have little to lose but their pain. I personally recommend they try the new medication Journavx, and certainly before they undergo more invasive procedures.

Thank you for reading my blog. I know I didn’t get terribly personal with all the tears, failures and heartbreak. I’ve had them all. Others have described these events and emotions better than I could; please read their blogs. My purpose is to bring the great news of a scientific triumph that may benefit many or all CRPS/RSD victims.

– Dr. Chris… C’est La Bella Vie, Mon Amie!

At the time of publication, Vertex and Journavx are not sponsors of RSDSA.

My Path To Surviving CRPS Torture

Written by Jennifer Ferreyra for the RSDSA blog.

Helping others find their path is transforming to your own life, and one of the greatest blessings in mine. It’s about someone who’s already walked in your shoes reaching back and pulling you up out of the rabbit hole. It’s about love, hope, compassion and reducing pain in the worst of circumstances. Why do I care? I’ve been through my own living hell, not just CRPS, and I can’t leave someone in a similar condition if I can help. If anything that follows helps you I’m blessed. If not, please, keep searching for your formula, advocate for yourself and don’t give up.

My CRPS Pain

My CRPS, started in late December of 2016 at age 53 with a severe, raw, lighting bolt-like onset after I thought I paid my dues to cancer 26 years earlier. I absolutely refuse to lose to this disease which produces the most excruciating pain known to man even at the slightest movement or touch.

I share your pain, your tears, screaming, years of personal research, uneducated doctors, unnecessary medications, EMG tests, blurred vision, photophobia, MRIs, CT scans and years of no meaningful resolution. And please, allow me to point out that the smiley face pain level chart in the doctor’s offices is almost offensive to a CRPS patient.

Each of our CRPS pain and torture is different. Maybe I’m lucky that my pain is dedicated only to my left arm. We have little idea as to why it started except to say it was at a very stressful time in my life.

I have less of what is traditionally explained as gasoline burning, but rather a huge lighting bolt of severe nerve pain racing down my arm top to bottom, holding in the wrist, every two minutes. This includes lots of atrophy, skin scraping off like oatmeal, and brachial plexitis. Sleep? The longest I’ve gone without a stitch of sleep was five days at the Mayo Clinic hotel in Florida where absolutely no resolve was found, along with all the other hospitals I consulted with.

My first onset looked like my arm was a dead white corpse. I couldn’t take a step or move a muscle without triggering severe pain. This lasted almost three years and included the use of do nothing IV treatments, epidurals, anti-seizure medications, opioids, prednisone, and withdrawal, after which the pain was resolved for three years post acupuncture then came back. After a year, a new onset of the same pain returned. I submitted to an unsuccessful stellate ganglion block, and thirty days of implants that attempted to address the symptoms not the cause. By now I was a frequent flyer to the MRI and found it easier to keep my own hospital gown at home for dressing.

How RSDS.org Saved Me

I asked multiple doctors about a support group and to be directed to the authority on CRPS. The response was always “I don’t know.” It was then, still totally consumed by CRPS, that I started to advocate for myself and found RSDSA (founded over 40 years ago!) After seven years in pain, I spent hours reading every article, and watching every video trying to find out what causes CRPS and what pain management is working for patients that made the most sense to me. I learned that CRPS is a disease of the brain, not the limb, and that my doctors were indeed treating the symptom of pain not the cause. This made so much sense because I felt as if I had inflammation in my head for years. 

As a result of seeing all the videos, I chose to march into my pain doctor’s office to request a drug referenced by some doctors and patients as successful – called Low Dose Naltrexone (LDN). He said, “oh, we can try that,” as if he already knew about it.

LDN apparently works with the Glia cells in the brain which is currently thought to be an important area of focus for CRPS. The Glia cells and nerves, relative to CRPS, are described in further detail by Dr. Pradeep Chopra in a Court TV trial presentation for the Maya Kawalski case on September 28, 2023 . You can also find information on Glia cells on rsds.org.

For me, 4.5 mg of LDN (less than $50 per month) showed immediate signs of success and took my pain from 12 to zero in a few months. I am now 16 months pain free. To start I had vivid dreams and mild headaches, which are expected. These subsided after a few months. My understanding is that Naltrexone does not work for everyone, but if it does or if you want to learn more, visit ldnresearchtrust.org, which I also found on my own. I have even emailed questions to the Trust and had return responses. 

Rhetorically, why was I prescribed years of opioids that didn’t work and never told of LDN by any of over ten doctors anytime over seven years? Why did it take my own initiative in excruciating pain to find my own way? Why don’t doctors know about RSDS.org?

I strongly suggest reading and viewing everything on the RSDSA site. Advocate for yourself. Spend the time, in addition to your doctor consults. Take notes. See what resonates with you. It’s empowering.  

Also keep an eye on the RSDSA YouTube Channel! https://www.youtube.com/@RSDSA

How I “Survived” Many Years of CRPS Torture 

CRPS is a courageous fight of physical and emotional suffering. It’s like bleeding from a wound you can’t tell anyone about because they don’t understand. What follows is what aided me in surviving years of CRPS torture. I’ve broken this up so that you can eat the meat and spit out the bones as they say. None of this will fully resolve CRPS, but it was my path out.

Mindset

You must grab on to and not let go of even the smallest thing that takes your mind away from CRPS or any other problem you may have. This is one of the ways out.

Mindset is powerful. CRPS is a brain disease so this makes sense. And this is supported by multiple doctors. For years I found myself latching onto anything that would take my brain’s thoughts away from CRPS pain. Strangely enough, and even to this day out of pain, my cell phone is always with me set to something which will distract my brain from CRPS and other health issues. Music, TV, podcasts, even if I’m not cognitively listening to it. One of my consistent choices is The Today Show every weekday morning before work. This feels to me like I had friends with me every second and the anchors were uplifting. Even NFL and MLB games work.

I recently ran across a clip on Facebook where Jim Carrey describes being buried alive over the eight hours it takes to apply the Grinch make-up, which he did 100 times. The story goes on to say that he put his foot through his trailer wall on day one and quit because he couldn’t take it. A CIA operative with expertise on how to survive torture was hired to help. While I don’t prescribe to the methods mentioned, Jim did say that somehow every song the Bee Gees ever made got him through the eight hour make-up applications. I laughed out loud because those songs did the same thing for me with CRPS pain. It was something about the Bee Gees. Of course there were other songs, but whatever works for you on any given day.

Somehow music speaks to the spirit like words can’t. I heard someone recently say that “music gives organization to our emotions.” In our family, Spotify is the best $12 we spend every month. Almost any imaginable song that might work in a day is there and more. At night I leave the rain and ocean music on to help get me to sleep. 

Mindset is often framed by time with friends, laughter, a photo in a magazine… find a way out and keep it going. Ups and downs are to be expected, but reward or praise yourself for even the smallest victories.

Look up Dr Philip Getson’s “The Optimist Creed”. This was recently shared on a slide in his March 6, 2025 Live Stream with RSDSA on YouTube.

Hope, Expectation, Perseverance

Do not be a bystander in your own life.

Hope is mandatory. 

It’s painful to wait in the hope line, but you must hold onto even the smallest glimmer of hope in your brain. Even if it’s a piece of sand. Find it! You must work at this every day. Focus on it. There will be good days and bad days but you must continue to pull out of the defeatist attitude by latching onto any glimmer of hope, any positive path that your brain provides.

If you can only move one finger or toe, do it, and praise yourself so that your mind understands this is victory. Then add another victory, praise it and so on.  

With perseverance and strength your minds perspective should change for the good and you’ll be encouraged to continue. Do not give up.

Food

Eat an anti-inflammatory diet, stay hydrated.

I’ve found that soy, alcohol, coffee, non-organic, and processed foods increase inflammation in my diet.

I’m lactose intolerant and removed soy from my diet with immediate positive inflammation changes. I now only drink organic almond milk, and organic products where possible. I completely stopped drinking coffee and alcohol which cause almost immediate inflammation in my head. I stay away from products where the first ingredient is generally entitled “enriched”which appears to be a proprietary cocktail of god knows what.

Heat/Cold  – My Heated Vest, Lawn Lounge Chair Pad, Steam Shower and Hot Towel

There is so much to CRPS that we had to learn on our own. Not a single doctor told me that CRPS may be impacted by weather, barometric pressure, and that nerves don’t like cold until years into CRPS after I figured out how to cope for myself. 

In spring, summer and fall, my outdoor lounge chair pad becomes hot in the sun and has been a wonderful aid to relax my muscles.

I can’t do without my heated fleece vests. I use Ororo brand but there are others. I wear the vest around the house and under layers when I go out in winter. 

When pain starts I force my self into a warm shower which includes a steam shower. Heat warms my muscles, increases circulation and seems to put me on a better path. Do not sit and do nothing, you’re patterning your brain to accept the pain path.

In desperate times of pain I wet a hand towel, roll it, put it in the microwave and then throw it over my arm for moist heat. If it’s too hot, add a dry towel over it. Remove it before it becomes cold and start again.

Please note, CRPS also doesn’t like to be too hot, so it’s a balancing act. I’m constantly adding and removing layers on and off throughout a day.

Cut the Stress

When stress enters my life I immediately get non-painful shocks to my bottom lip and my entire nervous system starts shaking beneath my skin. I’m told this is also from the brain and likely from years of CRPS pain without resolve. I’ve had to choose between my health and unhealthy relationships. Be your own advocate and chose that your health comes first. For me this meant stepping back in full or part from certain relationships and events.

Call Me Crazy – Just For Fun 

I DON’T RECOMMEND THE FOLLOWING, except for riding in the golf cart and staying active, but perhaps the following shows my level of commitment, or maybe just my stupidity. (Now I know you must be gentle with CRPS and full on golf may not be the way to do it.)

CRPS Onset #1 – Parenting: I’m a single parent and things had to get done. I would drive my car locally for two minutes, pull over and scream at the top of my lungs in pain, then drive for another two minutes and repeat. I conducted every aspect of my CRPS life with one arm for years. Made beds, did laundry, cooked food, shopped for food, worked a full time desk job, typed, even if it meant triggering level 12 pain.

CRPS Onset #2 – Golf: To pattern my brain for the better, I rode in a golf cart and didn’t play. As part of this plan, I didn’t anticipate actually playing, but that turned out differently. I went so far as to “play” golf in 10 of 10 pain for about three months until Naltrexone worked. I skipped any golf hole where someone other than my three golf friends were present. The pain would trigger when I hit the ball and I would yell a few choice four letter words and try to compose myself.

Going in and out of the golf course was okay. As long as I didn’t press on the left arm I could conduct conversations and nobody would know. If I felt pain coming, I would promptly excuse myself and try to get away fast.

Just sick. But as I said, I refuse to lose to this disease. And I refuse to let it take golf away from me.

Today

I’m 61 years old and 16 months out of pain on LDN which I expect to take for my lifetime. Over exertion causes severe exhaustion and shaking of my entire central nervous system. As I write, I have a persistent pinch in my back where my brain is recalling a years old mildly painful acupuncture needle. I’m addressing this by sitting on my yard lounge chair with a pad that is hot from the sun. 

Being out of severe pain is a blessing, but I work hard every day toward ensuring my brain doesn’t recall the pain of what I hope is in the past.

September is Pain Awareness Month!

by Lisa Van Allen, PhD, Chair of RSDSA’s Advocacy Committee

Throughout the month of September, RSDSA will participate in the US Pain Foundation’s #ThisIsPain awareness campaign on social media and we invite you to join us! Here are seven ways to raise awareness about chronic pain and CRPS:

Spread Awareness: U.S. Pain Foundation will share #ThisIsPain statistics and graphics on their social media channels each day. Consider sharing those on your social media channels and tell the story of how this neuro-inflammatory syndrome regularly impacts your pain. Help both organizations amplify the voices behind the numbers!

Tell Your Story: Submit an op-ed to your local news outlet—or send it to U.S. Pain and RSDSA. Please note that select stories may be featured on the U.S. Pain and/or RSDSA website and social platforms to spotlight lived experience.

Read & Share Weekly Articles: Each week, U.S. Pain will publish a new article highlighting key findings from their national survey. Consider sharing them to spark awareness and conversation!

Explore and Provide Data: Review U.S. Pain’s survey findings to understand the scope of pain in America and also consider taking RSDSA’s community survey so we can better understand what the CRPS community wants to see and hear from us.

Build Community: Join one of RSDSA support groups. We recently updated our support group list to ensure we are providing the most updated information to the community.

Advocate for Change: Contact your elected officials about policies affecting pain care. Share data with your congressional representatives and ask them to support funding for pain research.

Validate Someone’s Pain: Sometimes the most powerful action is simply listening. Reach out and remind someone with CRPS that they are seen, heard, and believed.

As you post on social media, be sure to use the hashtags #ThisIsPain along with #CRPS.

Advocacy Pays Off

by Lisa Van Allen, PhD, Chair of RSDSA’s Advocacy Committee

RSDSA sent out an alert asking you to contact your Congressional representatives to voice your support for increased funding of the NIH for research on rare diseases. During the week of August 11, I had virtual meetings with Senator Chuck Grassley, Senator Jodi Ernst, and Rep. Ashley Hinson. I also sent letters to senators working on the budget committee. Each of the staff members I talked with listened, asked great questions, and expressed their support. This was my second meeting with Sen. Grassley this year and he remembered our conversation during Rare Disease Week in February. This was impressive simply due to the huge number of people he talks to every day as he serves as Senate Pro Tempore, chair of the judiciary committee, and on the budget and finance committees. But he was moved by my story and acknowledged the need for continued research of rare diseases, including CRPS.

It is easy to be awed or intimidated by people serving in Congress, but we must remember two things: 1) they are human with all the strengths and deficits people have, and 2) they chose to accept a position that serves their constituents.

When you contact your representatives, keep this in mind. Appeal to their humanity. They don’t know CRPS pain, but they live with or know someone who lives with chronic pain. Remind them that you are watching their voting records. Mention votes you approve of, or encourage them to reconsider their position on an issue. You will find this blend of appealing to their humanity and respectfully holding them accountable for their actions will have them listening and engaging with your request. 

I am very happy to report that I have learned that our advocacy efforts are working. Funding levels for the NIH have been continued with an increase of $400 million dollars for the end of FY2025. I have been assured by the senators and representatives I contacted that they will keep our request for improved funding of rare disease research in mind as they consider the FY2026 budget. 

If you have not yet contacted your Congressional representatives, it is not too late! An email, letter or phone call takes very little time, but can make a big difference. We need as many of you participating as possible! Contact forms are available on most Senator and Representative web pages, so first identify your Congressional representatives via Congress.gov and then fill out the contact form on their web page. On the contact form, briefly share what living with CRPS is like, and then ask support for increased funding for rare disease research. When you’re done, you’ll have the joy of knowing you’ve made a difference! Let us know when you hear back from your representative as it will help me as I continue to advocate on behalf of RSDSA.