(877) 662-7737
Search

Category: Guest Blogger for 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, 2025).

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).


Self Advocacy: When It Feels Like It’s All Too Much

By Lisa Van Allen, Chair for RSDSA’s Advocacy Committee

I was recently listening to one of my favorite podcasts, Hidden Brain hosted by Shankar Vedantam, where the guest was talking about her research into how people respond to overwhelming challenges. In the episode, “When It’s All Too Much,” Sarah Jaquette Ray describes how she found her students were overwhelmed by the problems in today’s world to the point of nihilism, deep depression and in some cases suicide. It was not a leap to compare these students to people living with Complex Regional Pain Syndrome, nicknamed “The Suicide Disease.”

Living with unrelenting pain can drive you to feel that life is meaningless. There are many losses on this journey of pain – mobility, career, relationships, and especially the image you had in your mind of what your life was going to be. Those losses chip away at your sense of self and the things that bring you joy. Surviving and thriving in the face of this darkness is not easy. It requires choosing hope and intentionally lining up activities that give you a sense of meaning and purpose. 

Sarah Jaquette Ray spoke about several things that she believes can combat this nihilism. I believe these techniques will work to offset the deep suffering that comes with CRPS.

→ Being part of a community rather than trying to face overwhelm alone is essential. Isolation is a normal response to feelings of grief and depression, but it is not a solution. Sharing your fears and griefs with others lightens the load. But make sure this group focuses mainly on hope. If you’ve ever been in a Facebook group where everyone is describing how awful their symptoms are, you know just how contagious darkness and depression can be. That doesn’t mean you have to be a ‘Pollyanna’ and only express positive thoughts. Just be sure to surround yourself with people who know how to encourage and support you.

→ Focusing on beauty in spite of the ugliness in the world. We live in a world filled with extraordinary beauty, but we tend to spend more time on destructive, ugly things coming at us from our phones, TVs and other media. It is survival, not escapism, to turn off the news and turn on NatGeo or Discovery.

→ Learning to hold joy and suffering at the same time requires emotional maturity. All or nothing, black and white thinking limits your capacity to cultivate joy and purpose. Simply holding out your hands and imagining that you are simultaneously holding joy in one and suffering in the other opens a window of opportunity in your mind. Yes, I am in pain – And I am enjoying this moment because I am ___________. How would you fill in the blank? For me it might be holding my puppy, or painting a picture, or sitting on my deck with the sun on my face.

→ Finding small ways to reduce the pain. I can’t completely eliminate my pain, but I can find little things that make it better. Soaking in scented epsom salts and then spraying on a moisturizer makes my CRPS affected foot look and feel a little better. Mindfulness meditation is not a cure, but even five minutes of mindfulness and relaxed breathing reduces the stress that builds from constant pain. Getting a massage on non-affected areas helps reduce stress and tension as well.

→ Building up your spirituality and/or faith. Research has demonstrated over and over that meditation and prayer reduces pain and helps with healing. Belief in a Power greater than yourself and your problems can bring great comfort.

→ Spending time in purposeful activities helps you feel better about yourself and combat those feelings of worthlessness. Write a letter to your congressman about legislation that would make life better. Write an article for the RSDSA blog or your newspaper. Join a support group and share your story. Participate in the RSDSA Virtual Walk and raise funds that make a difference. There are all kinds of ways you can make life better for yourself and everyone living with CRPS.

Depression can be a serious disease. If you find yourself struggling with feelings of sadness, grief, loss, and or meaninglessness that last more than a few days and lead to pervasive thoughts of harming yourself, please get help. Contact your medical provider or a mental health professional. You might find that treatment of your depression might help with your pain, as medications used for depression and anxiety have been proven to help with pain management. Instead of allowing darkness to overwhelm, choose to create a life of meaning and joy.


If you’re ever in need of help, please call the National Suicide Prevention Lifeline by dialing 988. You can also send a text to the Crisis Text Line by texting the word HOPELINE to 741741

Pharmacy Benefit Managers and the DRUG Act

Written by Lisa Van Allen, Chair of the RSDSA Advocacy Committee, for the RSDSA blog.

I was recently asked for input on new legislation introduced by Rep. Marianette Miller-Meeks and five of her colleagues: Reps. Nannette Barragan (D-CA), Nicole Malliotakis (R-NY), Brad Schneider (D-IL), Rick Allen (R-GA), and Donald Norcross (D-NJ). The DRUG Act, or Delinking Revenue from Unfair Gouging Act, is a bipartisan bill that would rein in Pharmacy Benefit Managers (PBMs) requiring them to only charge a flat fee for drug placement versus letting them continue to charge a percentage of the drug price.

My response was a big YES – I support this bill and think you will want to as well. Here’s why:

The current structure in most pharmacies incentivizes PBMs to promote higher-priced medicine that takes money away from patients. PBMs are third-party administrators that manage prescription drug benefits for employers, health insurers, and other clients. They negotiate drug prices, process claims, and provide services such as drug rebates, disease management, and medication adherence programs. PBMs contribute to high drug costs because they are incentivized to steer patients towards drugs that are more profitable for PBMs, but may be less clinically effective for consumers. This broken system disproportionately harms low-income individuals, seniors, and those with chronic illnesses who rely on life-saving prescriptions to manage their health.

One of the challenges in demanding greater accountability from PBMs is the relative lack of information about how they operate. The drug pricing process overall is already opaque, and PBMs add another layer of secrecy. Most insurers contract with PBMs to handle the administrative side of their drug benefit provision. But PBMs have no obligation to share details with insurers about how the PBM determines formulary placements, why some drugs in the formulary are more costly than others, and what proportion of the rebates and negotiated drug payments PBMs keep. This presents a challenge for insurers, plan sponsors, and for patients who end up bearing the cost of medications they desperately need.

PBMs are a growing faction in the distribution and payment ecosystem for prescription medicines. As the entity between pharmaceutical companies and pharmacies, PBMs initially played a key role in reducing prescription medicine costs and increasing access and affordability for Americans. Unfortunately, PBMs have grown and vertically integrated to the point where the three largest PBMs control over 80% of prescriptions, up from 30% in 2010. There are six PBMs that make up most of the market: CVS (Caremark), Cigna (Express Scripts/Evernorth), UHC (OptumRx), Humana (Pharmacy Solutions), Magellan (Prime Therapeutics), and MedImpact Healthcare Systems. Their modern-day practices of driving up list prices to extract higher rebates for formulary placement are occurring at the expense of patients in the form of higher insurance premiums and higher prescription drug costs.

PBMs often bill patients more than what they pay to the pharmacy for medicines and keep the difference, enriching themselves instead of the patients they are supposed to benefit. This business practice, known as spread pricing, adds opacity to a supply chain that needs transparency. PBMs have attempted to rebrand spread pricing, calling it “risk mitigation pricing,” and contending that it provides predictability for plan sponsors and lowers drug cost. what spread pricing actually does is drive up costs without any accountability or explanation to the consumer.

Please write to your US Representative and ask them to support H.R. 6283, the DRUG Act, and start Delinking Revenue from Unfair Gouging.

You can find your representatives here.

Be sure to let me know what you think of the Drug Act. Do you have a story to share? We want to hear it!

March 2025 Legislative Update: Support the EXPERT Act

Written by Lisa Van Allen, Chair of the RSDSA Advocacy Committee, for the RSDSA blog.

Representatives Doris Matsui (D-CA) and Gus Bilirakis (R-FL) and Senators Amy Klobuchar (D-MN) and Roger Wicker (R-MS), co-chairs of the Rare Disease Congressional Caucus, reintroduced the Scientific External Process for Educated Review of Therapeutics (EXPERT) Act, which seeks to formalize the Externally-Led Scientific-Focused Drug Development (EL-SFDD) meeting at the Food and Drug Administration (FDA).

This legislation seeks to bridge the gap between rare disease expertise and regulatory expertise through the EL-SFDD. These quarterly meetings will provide an opportunity for enhanced collaboration between medical experts, drug sponsors, scientific organizations, and patient advocates to discuss the challenges impacting the development of rare disease treatments, identify scientific opportunities to facilitate development, discuss novel clinical trial designs, and align on endpoints to address unmet medical needs for rare disease patients. Each meeting will focus on a different rare disease topic, and the FDA will report annually on how these sessions are helping to shape and improve its internal review process for rare diseases. 

In layman’s terms, this would put researchers in the same room with patients and funders to work together toward shortening the timeline on the creation of drugs that treat rare diseases like CRPS.

For more on this bill, click here. 

Contact your legislators today and ask them to support the EXPERT Act.

When you contact your congressional representatives, be sure to also ask them to support funding for Medicare/Medicaid and FDA research. Budget cuts are coming and we need to remind our representatives just how important healthcare services and research are to us. If you have a specific story about how Medicare or Medicaid covers treatment you need, be sure to include it. And then share your letter with us – we want to hear your stories and have examples to share with others. 

Life Is Not a Contest. I LIVE at My Own Pace.

Written by Shawn Elaine Anderson for the RSDSA blog.


This photo is of me and my husband this past holiday at a restaurant. I don’t cook much anymore and we met a friend out for dinner, I was not feeling well, but I really wanted to go, so I mustered up the energy. We were meeting a friend who has no family in the area, so this was important. I can see the pain on my face a bit, like a forced smile, but you know what? I went, I had fun, and I am so glad that I challenged myself to get up and ready to go out that day, but I am a Warrior… so I did!

How and when did you develop CRPS/RSD?

I was in a really bad car accident in 2005 where I was hit near head on by a drunk driver three times the legal limit. I had a compound tibia-fibula fracture and compound Lisfranc fracture on my right leg and foot. In the fall of 2018, I had an incident with my hands and they both were very red and swollen. In January 2020, five full years now, I was first suspected to have RSD. My actual official diagnosis was April 24, 2020.

What has daily life been like since your diagnosis?

I had A LOT of pain the first two years after the car accident and swelling and bleeding from my scars up to two years later. I kept working full time for years. Eventually, I then developed full autonomic nervous system issues over the year and it became too hard for me to work and I quit full-time work at 51.

Since 2018 I have worked some part-time jobs here and there and was awarded full disability in 2022. I rebroke my ‘bad’ foot on January 31, 2024 and the last year has been tough. I’ve been staying the course of “use it or lose it” and staying as healthy as I can mentally and physically so I can get through these hurdles. I’m thankful to have the unwavering support of my husband (pictured).

I used to cook all the time. It really was a hobby of mine but my hands just don’t have the strength they used to have so I don’t do that as much anymore. We actually moved a year ago from Phoenix, AZ to Northern AZ as I just had to get to cooler temps due to my heat intolerance.

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

For the most part it is an invisible illness unless you see the breaks, casts, redness and or swelling… but it is invisible. No one wants this. I want for people who are not afflicted to understand that it is a serious issue and not just a functional disorder.

What advice would you give to newly diagnosed Warriors?

Always have faith in yourself no matter what. Gain support and advocacy from groups like RSDSA and others. Continue learning as new information seems to be available and being knowledgeable is key. You are still YOU. Yes, there will be challenges but always remember this is a beautiful life to live. And finally, it’s okay to isolate at times, but still find your tribe.

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

For anyone who has endured this for many years and you’re not in full remission, you get injured again, and then the pot gets stirred again, etc. you know you have to develop a thick skin to be able to set boundaries and communicate clearly with people.

This has gotten easier for me over the years, but overall it is still hard. I just view every day as a gift. I smile every day and find the goodness in all there is outside what may have been our prior normal life. We have no choice but to adapt.

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

Physical therapy and staying physically active in general is what helps in the long run. I am fortunate that I have not really needed many painkiller types of treatments. I am on Celebrex and have toggled between Lyrica and Gabapentin for nerve pain and they really seem to help. 

WRITING. Writing for me has been very therapeutic and helps me digest my thoughts and feelings about RSD and other co-morbidities. Counseling has been so key for me as well. Having a life coach (outside of a significant other, friend, or family member) to help you really look at things objectively and develop actionable plans for upcoming situations is great. Examples includes how to talk to family or friends about missing an event or what your needs are.

Spending time with my dogs is really important to me too. They are just such amazing creatures and give me such joy. I hope I am doing the same for them as well.

Anything else you would like to add?

Speaking of writing, check out my poem below to learn even more about my CRPS journey.

Connect with Shawn on Facebook and on LinkedIn. She also writes blogs for her and her husband’s music business on A432Life.com.

The Reality of Shawn’s Dis-Ease

When my bone is broke you see the cast
But you do not feel the pain that lasts

You don’t see agony, so hot and fierce
Like a miser I hide it in a tight coin purse

With great inflammation, skin shiny and tight
Nerves lose their sheaths in my mighty fight

The bone has healed, hopefully next is my soul
Yet my heart rate now is anything but slow

A woman blushes and glows, so I’m told
I sweat so much, hiding inside, once bold

Oh my dear Sun, I used to embrace as my own
Now there are days I wish you’d never shown

I’ve moved North and, yes, back to the snow
When sunny and sixties, still too hot I know

My skin dry and wrinkly, more so than most
But still to this LIFE, I pose a grand toast!

My bones I use and protect like fine crystal glass
Pain does not own me, I know it shall pass

I make the most of each day I’m alive and here
Trying to help others get through their fears!

Though my life took a one-eighty ‘bout face

Life is not a contest, I LIVE at my own pace

I Make NO excuses for a body that’s changed
I Just Embrace each day that I feel no Pain….

Every day I smile, on the outside I’m the same
I have nothing to prove… and I have ZERO shame

by: Shawn Elaine Anderson

Preparing to Talk With Legislators With a One-Pager

Written by Lisa Van Allen, Chair of the RSDSA Advocacy Committee, for the RSDSA blog.

Communicating directly with your legislator is the best way to promote change in the laws and policies affecting healthcare in the United States. When you meet with a legislator or staff member, preparation is important to assure your message is clearly and succinctly communicated. A “one-pager” is the best way to do this.

A “one pager” helps effectively deliver your message and facilitates a productive conversation on the issues of importance to you and your organization.

Meeting with a legislator or staff person in your local office or in the Capitol is a great way to share your CRPS story, information about your disease and/or organization, and problems that you and/or your organization face. We recommend creating a one pager to use as a tool during a meeting and to leave behind with the legislator or staffer at the end of the meeting.

A one pager is a brief fact sheet and should be one single page. When creating a one pager, present the information clearly and use concise bullet points.

Your one pager should include:

  • A brief statement on the organization you represent and what the organization does.
  • A brief summary of the problem that you are seeking help on. Use data and reference studies (when applicable) to support your position on the issue.
  • A brief summary of the solution to the problem, such as legislation, and what it will do for you and/or the pain community.
  • What your legislator can do to help, also known as the “Ask.” Example: Support the Protect Rare Act, HB 6094
  • Include a list of supporters such as a group of other organizations that support your position or piece of legislation, the co-sponsors of the legislation, and/or the other signers of the letter.
  • Include your contact information so that the legislator and staff person can contact you if they have any questions.

Creating your one-pager before your meeting with legislators is an excellent way to prepare and to create strong brief messages that will have an impact. 

Below you will see a sample one-pager on the PROTECT Rare Act. Do you have a one-pager that worked well in a meeting with a legislator? We’d love to hear about it! Contact the Advocacy committee at [email protected].

A New Pain Killer on the Market: The Good and the Not So Good on Journavx

by Pradeep Chopra, MD for the RSDSA blog. Edited for clarity.

There is a lot of discussion about the newest medicine on the market.

Suzetrigine, marketed under the brand name Journavx, is a novel non-opioid analgesic recently approved by the U.S. Food and Drug Administration (FDA) for the treatment of moderate-to-severe acute pain in adults. Developed by Vertex Pharmaceuticals, it represents the first new class of pain medication approved in over two decades. 

It works by blocking NaV1.8 channels. Pain is transmitted along nerves by the opening of NaV1.8 channels. Journavx blocks these sodium channels (NaV1.8) hence blocking pain transmission.

A few key points:

  • It affects only the nerves at the periphery (outside of the brain and spinal cord) like your arms, legs, etc. It does not cause addiction.
  • Unfortunately, Journavx is weaker than Vicodin in terms of controlling pain. It is more useful in acute post-operative pain and not in chronic pain. It failed treatment of low back pain.
  • Given its weak nature, it is unlikely to help CRPS.
  • CRPS is caused by central sensitization (aka pain triggered in the brain and spinal cord). Journavx does not act there. 

Clinical Efficacy

The efficacy of Journavx was demonstrated in two randomized, double-blind, placebo- and active-controlled trials involving patients undergoing abdominoplasty and bunionectomy surgeries. In both studies, participants receiving Journavx reported a statistically significant reduction in pain compared to those receiving a placebo. While Journavx did not outperform the opioid combination of hydrocodone and acetaminophen (Vicodin), it provided effective pain relief without the associated risks of opioid use. 

Benefits

  • Non-Opioid Alternative: Journavx offers a new option for acute pain management, addressing the need for effective treatments without the addiction potential inherent to opioids. 
  • Targeted Mechanism: By selectively inhibiting the NaV1.8 sodium channel, Journavx specifically modulates pain signals in peripheral neurons, potentially leading to fewer central nervous system side effects. 

Risks and Adverse Effects

In clinical trials, the most commonly reported adverse reactions among participants treated with Journavx included:

  • Itching
  • Muscle spasms
  • Elevated blood levels of creatine phosphokinase
  • Rash

Journavx is contraindicated for use with strong CYP3A inhibitors, and patients are advised to avoid consuming grapefruit products during treatment due to potential drug interactions. 

Considerations

While Journavx has shown promise in managing acute pain, its efficacy in chronic pain conditions remains under investigation. A Phase 2 study focusing on lumbosacral radiculopathy (lower back pain) did not demonstrate a significant benefit over placebo, highlighting the challenges in treating chronic pain and the need for further research. 

In summary, Journavx is not very impressive. It has a weak pain killing strength and is effective only in acute surgical pain and not for chronic pain. As with any medication, it is essential to weigh its benefits against potential risks and to consider individual patient needs when determining the most appropriate pain management strategy.

References

1. Oliver B, Devitt C, Park G, Razak A, Liu SM, Bergese SD. Drugs in Development to Manage Acute Pain. Drugs. 2025 Jan;85(1):11-19. doi: 10.1007/s40265-024-02118-0. Epub 2024 Nov 19. PMID: 39560856.

2. Hang Kong AY, Tan HS, Habib AS. VX-548 in the treatment of acute pain. Pain Manag. 2024 Sep;14(9):477-486. doi: 10.1080/17581869.2024.2421749. Epub 2024 Nov 18. PMID: 39552600; PMCID: PMC11721852.

Copyright 2025 Pradeep Chopra. All rights reserved.