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Category: Guest Blogger for RSDSA

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

When No One Believed Him: A Mother’s Fight and a Son’s Strength

Written by Natalie Mosley Klenotic for the RSDSA blog.

My son developed CRPS as an 11 year old when another child knocked him down at school. The unbearable pain was nearly instant. He thought that he’d somehow broken a bone in his foot. By the time dinner rolled around, he had removed his sock and shoe. As he began homework after dinner, he casually sat with his legs crossed, bumping his foot and the pain increased tenfold.

My son, Gage Klenotic, suffered with CRPS for 3 1/2 years. It was nearly a solid year before a physician diagnosed him. Daily life had us searching for an answer. Our podiatrist knew what Gage had and I knew what Gage had, because sadly I had a friend online, whose little girl suffered with CRPS, but no one else would diagnose him with CRPS.

I began researching all about CRPS. Life during that first year was hellish. I wanted to help my son, so we went to a dozen neurologists, pain physicians and doctors. Luckily, one prescribed physical therapy, so he began it in the hopes of something changing his pain. He completed physical therapy with zero pain medication for six months. Navigating an invisible illness with physicians calling your son a liar was unbelievably difficult during the first months of CRPS and it hurt our whole family. Those 3 1/2 years were traumatic and PTSD-causing.

I advocate and attempt to educate anyone who does not understand illness that can’t always be seen. Invisible Illness is not any less painful than an illness that can be seen with the naked eye. 

To anyone who is the caregiver for someone with CRPS, it is hugely important to listen, support, and help the CRPS patient feel safe and comfortable as they share their painful journey with you. And to anyone newly diagnosed, this community believes you. There is hope. There is hope for you to get better. There is hope to live with it and find a new path.

To anyone living with CRPS, you are an inspiration! I applaud you and anything you insightfully share is appreciated. 

My son found assistance through fludiotherapy. It is a warm sensation created with ground up corn husks being blown around the CRPS appendage. It didn’t cure it, but it was a pleasant sensation. Gage also had capsaicin cream used on his foot while he was under anesthesia. This cream is made from the hottest peppers and it burnt off his nerve endings and helped to reboot his nerves. It took months of recovery, but later he began to experience less pain when he coupled this with mental distractions via his psychiatrist. 

Thank you for this opportunity to advocate. I wrote about my son’s CRPS journey in a children’s book and an adult companion book. The children’s book is being given to newly diagnosed children by my son’s former pain physicians at the children’s hospital. I have also been interviewed on a podcast, because I want CRPS to be better understood. The CRPS community needs more information shared about them. A cure needs to be found. 

You can contact Natalie via Nataliemosleyklenoticbooks.com and [email protected].

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.

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.

Managing CRPS Is a Multi-Model Approach

Written by Andi Kohler for the RSDSA blog. Views expressed in content belong to the guest bloggers and not the organization, its affiliates, or employees.

How and when did you develop CRPS?

I developed CRPS in 2000 from a grade II MCL tear in my knee. The tear was non-surgical and my excruciating pain was out of proportion to the injury. Upon initially tearing the ligament, my leg turn ice cold and purple from the knee down to my toes and I could not move this area. 

What has daily life been like since your diagnosis?

A rollercoaster, depending on the year and various other injuries/surgeries. It has been daily management of varying degrees of unseen pain, and a mental battle to overcome. I’ve had to work to overpower a negative and depressed mindset.

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

Prioritize yourself, always. Anyone should do this really, but especially CRPS Warriors. Be brave and dive deep into past traumas, healing yourself and forgiving. I find that neglecting to do this fuels the monster of pain inside us. 

What advice would you give to newly diagnosed Warriors?

Always be your own advocate, especially within the medical system. Fight until you find a team of doctors that will listen to you, support you and research for you. Do your own research. Opioids make CRPS worse over time. Having been on opioids on and off for nine years and eventually stopping them in order to pursue ketamine infusions, I can absolutely say medications that target nerve pain and inflammation in the brain are far superior for long-term management of CRPS. 

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

You can always decrease your pain and go into remission. I’ve had CRPS for 25 years. It started in my lower right leg and over the years due to stress and additional surgeries, I now have CRPS in all four limbs. In theory, it has affected my bladder and stomach as well. I was on full time disability for seven years and a year ago I was able to start working. I now work full-time and am coming off disability. Your doctors have to guide and advise you, however they are not a replacement for the overwhelming power your mind has. Keep a positive attitude, heal your emotional traumas, focus on a healthy diet and lifestyle, and advocate for your well being. 

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

Physical therapy and graded motor imagery have really helped me, but always in conjunction with medical management. 

Sympathetic blocks were tremendously helpful. I’ve received them for my leg and my arm. However, their effectiveness does wear off over time with repeated injections. 

Spinal cord stimulator – I use mine 24/7 and could not function without it.

Ketamine infusions – I received these miraculous treatments for six years every month. I started once a month and ended with three days a month. I would go into my sessions barely able to walk with a cane and come out of the infusions walking normally with no limp and able to sustain a mile walk. 

Muscle relaxants – I take Baclofen, it does wonders for the the muscle cramping and dystonia that can happen as a sequelae to CRPS. 

Low-dose Naltrexone – I take this daily and can’t function without it. It is wonderful for reducing pain and is not an opioid.

Diet – I stick to a strict anti-inflammatory diet with no dairy, no gluten and no red meat. If I eat sugar or go off this diet, I feel so swollen, stiff, and achey the next day. It’s not worth it to me! 

Exercise – Even if you can barely walk around your house, still find a way to move every single day. Yoga is very helpful at any stage of CRPS as it stretches your soft tissues and muscles while building strength in a subtle way. You can even do yoga while in a chair. At one point three years ago, I could hardly walk without a cane and could only stretch. Now, I do yoga and pilates plus go to the gym for weights, etc. 4x a week. This was a slow and very gradual progression of healing my body, but I kept a positive attitude, even if the achievement of the day was getting out of bed. A year and a half ago I was in 8-10/10 pain every moment of every day and now I am in 3-5/10 pain and working full time. 

Anything else you would like to add?

I think our mental health and the way we process thoughts is extremely important to managing our pain. I meditate daily, practice mindfulness and say positive affirmations of gratitude, especially when I’m feeling sorry for myself or painful. It works, I promise. 

If you are unhappy in your life, change it. For me, I tended to stuff my emotions deep inside but I find that this makes my pain worse. I prioritize putting myself and living in positive, uplifting environments with similar types of people. It takes so much energy to manage our pain and mental health as CRPS warriors, I think surrounding ourselves with joyous, supportive and happy people is crucial. I’ve made drastic changes in my life within the last year in order to make this happen, and it has paid off exponentially in enhancing my mental and physical well-being. 

I have also been on an intense emotional healing journey for about five years. I see a counselor weekly, work on self-help and improvement workbooks, and I’ve healed my severe childhood trauma. This greatly reduced my CRPS symptoms and I am so much healthier and happier because of it. 

Managing CRPS is a multi-model approach involving exercise, physical therapy, diet, mental awareness, medications and sometimes interventional surgical/therapeutic management. I do not believe there is currently a magic pill to treat this disease, so it is up to us to find our enhanced protocol and system to living our best life while managing our CRPS.

10 Years of Helping Kids With Chronic Pain

Since 2015, RSDSA has served as a co-sponsor for The Coalition Against Pediatric Pain’s (TCAPP) Pediatric Pain Week. We recently caught up with our Sue Pinkham about the decade-long relationship.

Tell us about yourself and how you became involved with RSDSA + TCAPP.

Hi, my name is Sue Pinkham, and I’m a member of RSDSA’s Board of Directors, a founding member and president of The Coalition Against Pediatric Pain (TCAPP) and a board member of Tyler’s Dream.

My daughter was diagnosed with CRPS when she was 15 years old after having a knee surgery, which was later learned to be unnecessary. After the surgery, when the pain wouldn’t go away, she was referred to the Pediatric Pain Rehabilitation Center (PPRC) at Boston Children’s Hospital (BCH), and they diagnosed her with RSD.

I met several Moms at BCH and we formed our own support group. The families would visit each other’s houses, have pizza parties/cookouts for the kids, and it was a great way for both the children and parents to support each other. It was awesome hearing the children laugh and have fun together.

As Moms, we searched for support for our children living with chronic pain, and quickly discovered there was nothing available for children in pain. At the time, we discovered RSDSA, but they didn’t have any information or events for children. We decided to support RSDSA through our fundraising efforts. RSDSA welcomed us with such compassion and love for our children. We named ourselves Mothers Against Chronic Pain! The MACPs. During the next several years, we fundraised for RSDSA, having yard sales, a Spring Fling, selling Macy’s Coupons, etc. In fact, I remember one

yard sale we made over $5,000 and RSDSA was wondering what we were selling! LOL!

After years of supporting RSDSA, I was asked if I’d like to join the Board of Directors. I was thrilled to be nominated and so thankful to the board for accepting me. I felt like it was a way to help not only my daughter, but all children suffering with CRPS. Soon after I joined, the board understood I was there to advocate for children with RSD/CRPS, because there was no support or understanding of what these children live with daily. After working with RSDSA for several years, most of our children from the MACPs were beginning to show signs of other diseases such as Ehlers- Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Gastroparesis, Mast Cell Activation Disorder, etc. As a group of Moms whose children were not only suffering from CRPS but many other diagnoses, we decided we needed to form our own 501(3) and The Coalition Against Pediatric Pain was formed.

It was a long journey for five Moms but it’s been the most rewarding experience of my life, other than being a MOM!

How did RSDSA become a co-sponsor of TCAPP’s Pediatric Pain Week back in 2015?

One of TCAPP’s dreams was to sponsor a summer camp for children living in chronic pain, not to discuss their pain, but to have FUN and meet other children/families who deal with similar medical conditions. When I talked to Jim Broatch about helping sponsor the camp, he loved the idea. We brought it to the BOD and we’ve partnered every year since 2015 to bring a summer camp to our children who live with chronic pain.

Even during COVID, RSDSA and TCAPP came together to do an online camp for the children, which was very successful. This year, we are taking 20 families to Great Wolf Lodge in Connecticut as our regular camp, the Center for Courageous Kids, has decided to have mostly individual camps, not family camps. We are very excited for our children and families and have lots of activities and FUN planned for this event. Currently, this event is full, but we are accepting applications for a waitlist.

What does RSDSA’s sponsorship entail?

RSDSA has co-sponsored TCAPP’s Pediatric Pain Week since 2015 by supporting us financially, advertising the camp, and sharing their brochures with all the families.

Together, we are making a difference in the lives of these children and families. It’s awesome to have a “sister organization” that works together as equals to give these children such an amazing experience of summer camp, making friends and having FUN!

What drives you to put on this camp each year?

Children living with chronic pain often miss parties, sleepovers, dances, vacations, etc., due to their medical conditions. Sometimes they are left out of friends’ gatherings, too, because they are the “sick” kid. TCAPP’s dream was to provide these children with a place where they felt safe, could make friends who “get it”, and to have FUN! Every child I’ve met at camp is inspirational, kind, and caring. It is an honor to be able to provide this camp for them and their wonderful families every year. It brings the community together and lets us know we are not alone in this journey.

Do you have a story that touches you the most over the last decade?

During one of our camps, one of the campers shared with the entire group that camp “saved her life”. She stood up in front of everyone and explained that she had attempted to take her own life two times, before attending Pediatric Pain Week. But, after attending our camp, she now had friends who understood what she was going through, and she could call or text them if she needed a friend. This was extremely emotional for everyone, but it made me realize how important it was to bring these children together and give them the experience of meeting others and learning to enjoy themselves even though they were still in pain. Distraction is an amazing tool for chronic pain patients.

How can CRPS Warriors get involved with Pediatric Pain Week?

During Pediatric Pain Week, parents are responsible for being with their children 24/7, therefore, we don’t have a lot of room for volunteers while camp is in session. Lodging is limited for volunteers as we want to serve as many children as possible. If you have a child living with chronic pain and have questions about our camp, please email [email protected] or call Sue at 781-771-2095.

Thank you very much for the opportunity to share RSDSA’s and TCAPP’s special relationship over the last 14 years. We are thrilled to have an amazing relationship with RSDSA and are very grateful for their support.

RSDSA recently donated $10,000 to help The Coalition Against Pediatric Pain bring children and families to TCAPP’s 2025 Pediatric Pain Week at the Great Wolf Lodge Adventure in Connecticut!

We have supported TCAPP since 2015. Our partnership is changing lives for children living in chronic pain. Learn more about Sending Children with Pain to Summer Camp.

How Learning the Neuroscience of Pain Helps | CRPS Scholarship Available

Hiking in Oregon with my husband Patrick and dog Elmo one year after getting CRPS.

Written by Leslie Rowe for the RSDSA blog. Her full story and information about the scholarship she mentions below are in this video (deadline April 30, 2026). You can learn even more about Leslie via her post on SpiritualDirection.com.

How and when did you develop CRPS/RSD?

I had foot/ankle surgery in December 2023 and woke up with searing pain. I went to the ER twice in the first few weeks and had numerous splint changes. It felt like my foot was being crushed, electrocuted and held over a fire – all at the same time. It was red, twice the size of the left, much warmer and hypersensitive to touch. A pain doctor was the first person who had me take off both shoes and socks. After looking at the comparison, she told me I had CRPS. Thankfully this was just three months after my surgery.

Unfortunately, it put me in a tailspin. I spent hours researching “Dr. Googles” to find out why it happened, and how to fix it. I read I just had “6 months” before it would turn to the “cold stage,” so I was very scared. Now I know that is not correct. I have never gone to the “cold stage” and sometimes it is still a little warmer. I also now know that a scared brain causes neuropathways to be even more sensitive. Although I still have some pain and numbness, I know the early diagnosis is why I’m now able to hike 10 miles and bike 30 miles.

Why do you think you got CRPS/RSD?

I did an MR Neurogram in May, then later had EMG/NCV nerve testing that showed severe damage of several nerves in my foot/ankle. Some were in places I did not have surgery, so must have been from the nerve blocks I had during my surgery. That said, not everyone who has surgery and nerve blocks gets CRPS. After researching it, I believe these are the factors that contributed to it happening to me:

→ Genetics: I have Ehlers Danlos hypermobility, connective tissue disease and Raynaud’s, so my nerves are more sensitive.

→ Immobilization: I had several procedures, so I was supposed to be in a cast/splint/walking cast for 3 months. Now I know immobilization can exacerbate pain signals.

→ Warped view of pain: As a former Ironman triathlete, long-distance cyclist and runner, I pushed through too much, living by the mantra, “pain is weakness leaving the body”. I know now this really confused my brain.

→ Living in “Fight” mode: My dad died when I was eight, we had a house fire a few years later and my mom had several challenges, then died when I was in my early 20s. My nervous system was stuck in “fight” mode for decades – hypervigilant and trying to predict what next traumatic event may happen. Not a healthy way to live.

→ Type A multi-tasker: I used to jam-pack my schedule to get a million things done, taxing my nervous system.

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

Common CRPS therapies like PT, desensitization, mirror therapy, graded motor imagery (I used the Recognise app), and lymphatic drainage massage were key. Others that helped:

→ Brain retraining: I learned so much from Alissa Wolfe’s course about how the nervous system becomes hypersensitive (even without CRPS), and how – and why – the brain sometimes amplifies pain signals. I acknowledge the pain, but don’t amplify it.

→ Forgiveness: This was very difficult and took many months, but I had to let go of the anger I felt at the doctors. I know they didn’t intentionally do something to make this happen. I also knew the anger was keeping me from healing.

→ Movement: I kept moving my foot, even when it was just a millimeter at a time, and I had to move it myself. In the pool, I’d just hang at first, as it felt better being weightless. Eventually I swam, but at first just using one leg. I got an old recumbent indoor bike, then an old outdoor trike.

→ Steroids: I was on prednisone for almost three months (different doses), and that helped tremendously.

→ Hydrydissection: I had a nerve hydrodissection to separate the one nerve from scar tissue. It was incredible to watch on the ultrasound! The week after, I rode my 2-wheeled bike – giggling like I was a 4-year-old child learning to ride for the first time.

→ Science of slowing down: Praying more and intentional breathwork help give my body and brain rest time throughout the day. I try not to over-schedule myself and be more open to people helping me. When I have a setback, I know I need to stop and rest.

What advice would you give to newly diagnosed Warriors?

Stay positive! Anxiety causes your brain to be more sensitive to pain. Learn how emotions affect pain. Know you have some control over the level of your pain by how you respond to it. Educate your family and friends about the neuroscience of pain, and how to help you improve without pushing too hard. Be clear with them about your pain level, so they know when you may need more physical help and emotional support. Don’t spend too much time on the internet but do your research and be an advocate for yourself. Your journey is unique – what works for someone else may not for you. Try the least invasive therapies first, to see if they help. I never did sympathetic nerve blocks and some of the drugs suggested because I wanted to get to the root of my pain and felt those may just cover it up. I know they do work for some people though.

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

That’s a tough one, as I’ve just had it for a 1 ½ years and cannot imagine having it for a long time – especially if it was not diagnosed early. When I talk with people who’ve had it for years, I try to encourage them to stay hopeful and try therapies related to rewiring hypersensitive nerve pathways. In a recent conversation with someone who is an expert on CRPS, he suggested that people who’ve had CRPS for a long time have neuropathways that have been cemented like “8-lane highways” compared to my brain last year, which was more like a “dirt lane road” and probably easier to rewire since I was diagnosed so early. That said, the brain is amazing and always creating new pathways, so hopefully those who have had this a long time can still get some relief from brain retraining strategies.

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

Be supportive and empathetic, hopeful and encouraging. Ask about the pain, but don’t talk about it too much. Sometimes it’s good to have the brain rest from that conversation – and the person doesn’t want to be defined by the pain.

Anything else you would like to add?

I am covering half of a scholarship for Alissa Wolfe’s self-guided course (usually $599), which is what helped me so much. She also has a more personalized course with small support groups. I share my journey in this video, which I hope can help those suffering from CRPS: Life-Changing Help For CRPS + Scholarship Announcement (Leslie’s Recovery Story).