My Path To Surviving CRPS Torture

Written by Jennifer Ferreyra for the RSDSA blog.

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

My CRPS Pain

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

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

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

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

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

How RSDS.org Saved Me

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

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

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

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

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

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

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

How I “Survived” Many Years of CRPS Torture 

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

Mindset

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

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

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

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

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

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

Hope, Expectation, Perseverance

Do not be a bystander in your own life.

Hope is mandatory. 

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

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

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

Food

Eat an anti-inflammatory diet, stay hydrated.

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

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

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

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

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

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

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

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

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

Cut the Stress

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

Call Me Crazy – Just For Fun 

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

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

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

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

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

Today

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

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

September is Pain Awareness Month!

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

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

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

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

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

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

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

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

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

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

Advocacy Pays Off

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

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

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

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

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

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

Please Urge Congress to Protect Pain Research

The House and Senate Appropriations Committees are working on the FY2026 budget bills now. The President has proposed a 40% cut to NIH’s budget.

Pain research at the NIH has long had a tiny budget relative to other diseases and conditions with lesser burdens affecting lesser numbers of Americans. But all that changed dramatically in 2018 when it was clear that the lack of effective treatments for pain had meant relying on opioids for pain management.

As a result, Congress increased the overall funding of pain research across the NIH and started the HEAL (The Helping to End Addiction Long-term®) Initiative. A little less than half of the HEAL funding goes to pain research and the other half to Substance Use Disorders (SUD) research.

Since 2018, great progress has been made in conducting research to better understand pain, determine the best way to make appropriate use of the treatments we have and find new treatments.

Now is not the time to stop that funding, just when we are beginning to see the fruits of that investment emerge. Please use your voice to tell Congress to protect the NIH Pain Research budget and the HEAL Initiative.

The US Pain Foundation has a simple online form you can use to send a message to your congressional representatives.

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.

Fall Conference Early Bird Pricing Ends July 25th

RSDSA’s in-person conference is back for CRPS Warriors, caregivers, and professionals that support our community!

We are looking forward to coming together at the Sheraton DFW Airport Hotel in Irving, Texas (Dallas) to discuss the latest updates on CRPS, hear from experts, and to network with others who truly understand from Friday, October 24th to Saturday, October 25th.

We’ll kick the weekend off by hosting a meet and greet on Friday evening. Our conference sessions will take place on Saturday beginning at 9:30 AM. All speakers and sessions will focus on a number of CRPS-related topics including research, advocacy, mindset motivation, legal challenges, caregiving, and more.

We encourage CRPS Warriors to invite their physicians to the conference so they can learn more about treating CRPS! Please help us spread the word to physicians in your area. We also encourage you to invite attorneys you work with so they can learn more about about defending CRPS patients.

At the time of this post, we have also confirmed the following sessions with more speakers and final times to be announced:

  • Pradeep Chopra – Managing CRPS in Adults and Children
  • Peter A. Moskovitz, MD – Treating the Whole Person Begins with Trust ( A conversation about doctor and patient relations)
  • Lisa Van Allen – Discussion on CRPS and Advocacy
  • Sue Pinkham – Caregiver Connect
  • Stephen Bruehl, PhD and Norman Harden, MD – Scientific and Research Advancements
  • Understanding the Impact on Upcoming Medicaid Changes
  • Dr. Joshua Prager – CRPS: Things You Wish Someone Had Told You
  • Bryan Pope, Esq. – 5 Questions You Should Ask Your Attorney

Info and Important Dates to Remember

  • Early Bird Registration Pricing ends July 25, 2025 | Register Today!
    • $40 for CRPS Warriors
    • $40 for Caregivers
    • $100 for Professionals
  • Registration includes lunch on Saturday
  • Our room rate of $154 per night ends on October 2, 2025
  • If you’re interested in an expo table or sponsoring the conference, email us at [email protected].

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.

Retrospective Analysis of Liver Function Post Intravenous Ketamine for Treating Complex Regional Pain Syndrome

One of the big arguments that insurance companies make about IV ketamine and CRPS is that it affects the liver.

Researchers and physicians, including Dr. Pradeep Chopra, Dr. Philip Getson, and Dr. Jay Joshi, analyzed the medical records of 52 patients who received IV ketamine and not one of them had an abnormal live function test.

Read the full study here and below.

Liver Function Ketamine CRPSDownload

New CRPS Discovery from McGill University

McGill University researchers, in collaboration with colleagues in Israel and Ireland, have developed AI technology that can detect patterns in gut bacteria to identify complex regional pain syndrome (CRPS) with remarkable accuracy, potentially transforming how CRPS is diagnosed and treated.

The research identified significant differences between the gut bacteria of CRPS patients and pain-free individuals.

Read the full announcement, and learn more about the study, on the McGill Newsroom.

RSDSA has contacted the researchers to learn more about future trials/studies. We have also invited them to speak with the community about the findings. Stay tuned for more details!

Participate in a New CRPS Study in San Diego

The University of California, San Diego is sponsoring “The Effects and Mechanisms of a High CBD Cannabis Extract (BRC-002) for the Treatment of Pain and Health in Complex Regional Pain Syndrome” study.

The trial consists of a pre-treatment screening period, six-week treatment period and a two-week follow-up. It is for CRPS Warriors between the ages of 21-75.

Learn more about the study and if you’re eligible here.