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 eligibile here.
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).
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
In a recent RSDSA-supported study published in BMC Molecular Medicine, scientists describe, for the first time, two biological subtypes of CRPS type 1 that are consistent across both skin and blood.
This study identified two potential biological subgroups of CRPS type 1 in women through skin and blood transcriptomic profiling, advancing the understanding of CRPS. This could facilitate the development of targeted treatments for CRPS type 1.
Learn more and read the full study here.
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!
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.
by Lisa Van Allen, Chair of RSDSA’s Advocacy Committee
I wish I could put into words exactly how and why Rare Disease Week was so empowering and transformative. Maybe it had something to do with my excitement over the freedom I felt, traveling on my own for the first time in years due to improved health. Maybe it was being in the US Capitol and having access to people in power during such an important time in history. Maybe it was the camaraderie and kinship I felt in meeting so many people living with the challenges that come with a rare disease.
The EveryLife Foundation did an amazing job in putting this important event together. They helped us find common ground in the isolation we often feel, the struggles we have in getting an accurate diagnosis, and the yearning we all have for an effective treatment and cure. They put a lot of thought into the comfort and needs of people in pain and/or with mobility challenges. The lanyards were colored red, yellow or green, indicating your preference for social distancing. The food was labeled with potential allergens or if it was gluten or nut free. There were plenty of breaks, as sitting still is hard even for the able-bodied. And people were incredibly kind and willing to help in any way needed. I go into all this because I don’t want anything to stop YOU from going with me next year!
Congressional Briefing
The meat of the conference was on Tuesday, which was packed with briefings from legislative advocates and healthcare lobbyists. We were given a deep dive on key policies selected specifically for their impact on rare diseases. This training was to prepare us for our meetings with legislators scheduled for Wednesday.
Ask #1: Ensuring Steady and Robust Federal Biomedical Research Funding & Public Health Agency
The current political climate has increased tensions with staffing cuts and potential budget cuts on the horizon. Dr. Amy Bower (a medical researcher and rare mom from Creighton University) made a strong case on how decreased funding impacts not just individual lives, but entire communities, states, and the nation. The three key federal agencies that support the rare disease community are the NIH (NCATS, the National Center for Advancing Translational Services, is considered the home for rare disease research at NIH), the FDA (which partners with rare disease researchers and device developers to ensure safe, effective treatments), and the CDC (which provides information on disease and protects from threats).
Ask #2: Reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) Program at the FDA
The FDA approves new treatments for rare pediatric diseases and assigns a Prioritized Review Voucher to the company conducting the research. In spite of bipartisan support, the program expired in December 2024. After September 30, 2026, the FDA will no longer be able to award PRVs.
The Give Kids a Chance Act of 2025 (HR 1262) includes a reauthorization of the PRV program. The Senate is expected to introduce companion legislation soon.
Ask #3: Include Accelerating Kids’ Access to Care Act (AKACA) in the First Legislative Package
Many children do not have access to specialized care for their rare diseases in their home states. Bureaucratic rules currently require children accessing care through Medicaid or Children’s Health Insurance Plans to treatment in their home state.
On September 17, 2024, the House unanimously passed the Kids’ Access to Care Act, but unfortunately, healthcare policies were dropped from the end-of-year budget package and AKACA did not pass.
Ask #4: Ask Your Members of Congress to join the Rare Disease Caucus
The Rare Disease Caucus is a bipartisan, bicameral caucus that raises awareness of rare diseases. To see whether your congressional representatives are part of the Rare Disease Caucus, click here.
Ask #5: Support for HB 6094, the “PROTECT Rare Act” (Providing Realistic Opportunity to Equal and Comparable Treatments for Rare)
You have seen me talk about this bill in previous blog posts and on social media. This ask has the potential of improving the lives of people with rare diseases (like CRPS/RSD) by ensuring access and insurance coverage for ‘off-label’ medications (like IV Ketamine for Chronic pain, as the FDA has not yet approved it’s use for chronic pain). There is a precedent for this access, as cancer patients were given access to off-label medications and treatments in the 1980’s and people’s lives were improved and saved. The Rare Disease Community is asking for parity in access to these potentially life-changing medications.
The conference day ended with opportunities for individuals new to advocacy to meet with other advocates from their state and to work on their “ask”. The group from Iowa (where I live) was small, with only four of us attending. This was actually a good thing, as it gave opportunity for each of us to briefly tell our story and make a specific “ask”.
Congressional Meetings
The group from Iowa met outside Senator Grassley’s office at 9 AM and were pleased to discover the Senator was attending the meeting with his healthcare staff Nic Pottebaum. This is a special honor as Sen. Grassley is a man with heavy influence and is President Pro Tempore, making him 3rd in the line of Presidential succession. I’ve known Senator Grassley from my past work in Community Health Improvement Planning for Eastern Iowa. He also knows my husband as a fellow UNI grad and Panther football and basketball supporter. But I have not ever shared my CRPS story with the Senator, and I appreciated his listening with empathy and interest in my ask – that he support HB 6094, the Protect Rare Act. I shared a bit about how IV ketamine has improved my life, even making my trip possible. I shared that there is only ONE outpatient infusion center offering ketamine for chronic pain in the entire state and that I drive 4 hrs. out of state for my infusions. Senator Grassley and Nic agreed to research this bill and that the access to care it promises is needed for people living with rare diseases.
We had a little extra time after our stories and asks were made, and the Senator asked if we had any other questions. I asked about his assessment on cuts anticipated from Medicare/Medicaid, as well as from the FDA and NIH and the potential impact it would have on the rare disease community. He spoke briefly about the current turbulence in Washington, and how things are changing at a pace that hasn’t been seen before. But, he gave a brief civics lesson on how changes to policy and to the budget requires that the Senate and the House come to some agreement. The House and Senate are currently very divided on where budgets ought to be made, and so this process will be slowed until consensus is found. I shared that I found this reassuring in that this gives us time to appeal to our representatives in Congress and to remind them of what we want – consistent funding for rare disease research and access to care. The Senator agreed that he works for Iowans… as every legislator works for their constituents, and needs reminded of this.
The rest of our meetings were with legislative staffers for Representatives Miller-Meeks (who already supports HB 6094), Feenstra and Hinson and Senator Ernst. We each told our stories and made our asks, and I felt each staffer listened and cared about our concerns. Everyone we talked to was very supportive of the pediatric asks, and understood our concerns about funding for research. I got commitments from each staffer that they would share the literature I left on CRPS and on HB 6094 with their legislator. I made particular mention of the frequent contact I have had with veterans with CRPS to Sarah Melone, Senator Ernst’s healthcare policy assistant, as the senator is very active in veteran’s affairs. She was moved by the story I shared about one man who called me, and how his life has been transformed since getting help because of information he found here on the RSDSA blog.
Rare Artist Reception
Every year the EveryLife Foundation selects several ‘Rare Artists’ who have submitted written (poetry) or visual art. The Rare Artists are honored at a reception and are invited to participate in additional training to be able to speak out and share their stories at congressional meetings. You can see the 2024 artists works and hear a bit of their stories here.
I spent a little time during a break with two of the artists, Dana Simmons and Eugenia Hsu. (I learned Eugenia and I both worked with the Disability Rights Education Defense Fund – DREDF in past lives, and attended the same grad school at about the same time. Small world!). Both women talked about the challenges of diagnosis, the isolation of being misunderstood, and the power art has given them to express their emotions. As an artist myself, I was impressed with the power to raise awareness with our work and help others understand a little more about what we face every day. I KNOW I’m not the only artist who uses painting or drawing or sculpture or poetry to deal and distract from my pain. We need to have someone with CRPS/RSD represented next year! I plan on submitting a piece – who else will take on this challenge?
NIH Scientific Presentations
Originally, my plan was to be in DC for the entire week, but I learned a couple weeks before leaving that the Thursday and Friday sessions at the NIH had been cancelled. Honestly a part of me was thankful my trip was shortened – I was nearing my pain tolerance limit by Wednesday night. Even so, I was looking forward to being at the NIH as I’ve been told their presentations last year were the highlight of the conference. NIH staffing cuts caused the cancellation of the scientific presentations. It is a strange feeling when national news items hit you personally. DOGE staffing cuts and impending budget cuts were on everyone’s minds and part of nearly every conversation. This is not a political issue – it is a healthcare issue. Regardless of where you land on the political spectrum, your voice is needed. We each need to contact our representatives are ask them to protect funding for research and access to care for rare diseases.
Here’s Your Call to Action:
1. Write your legislators about your concerns about the coming budget cuts. I encourage you to focus on:
You can find your legislator’s contact information here under the “Contact Your Member” section.
2. Put Rare Disease Week 2026 on your calendar. It’s the last week of February – and you don’t want to miss it!
3. Consider entering a piece of your work if you are an artist in the Rare Artist contest.
Let me know when you’ve done these things! And don’t hesitate to ask any questions – if I don’t have the answer I will find someone who does!
Many individuals reach out to RSDSA in order to complete an “In Honor/In Memory” gift for a loved one with CRPS. Below are answers to frequently asked questions regarding this process.
Donating Via Check
If you choose to make an in-memoriam donation via check, do not forget to add the person’s name to the memo line. You can also include a note with those details in your envelope.
You can mail a personal check via the US Postal Service to this address:
RSDSA
PO Box 502
Milford, CT 06460
If you would prefer to send a check via FedEx or UPS, please use the following address:
RSDSA
99 Cherry Street
Milford, CT 06460
Please make checks payable to RSDSA. Please do not send cash.
If you forget to add the loved one’s name, you can always email it to us at [email protected].
Completing An Online Donation
First, visit rsds.org/donate.
Under the “Ways To Give” section, click the blue “Donate” button to be redirected to PayPal.
Select the amount you would like to donate and the frequency.
Under the “Use this donation for” section, please click “In Honor/In Memory.”
Donate With PayPal Option
If you click “Donate with PayPal,” you’ll be asked to log in to PayPal on the next screen.
From there, click the card or bank account you want to donate from and click “Next.”
On the following screen, there will be a section that says, “Add a note to your donation.” Be sure to add the name of the person you are making the gift in honor of to this section.
Donate with Debit or Credit Card Option
If you click “Donate with Debit or Credit Card,” you’ll be asked to input your card information on the next screen.
A section that says “Write a note (Optional)” will also appear on this page. Be sure to add the name of the person you are making the gift in honor of to this section.
Additional Reminders
RSDSA is a 501(c)3 not-for-profit organization. All donations are tax-deductible, so please keep your receipt. Our EIN is 22-2559139.
If you would like us to add your loved one to our CRPS Warriors Memorial, please email us at [email protected].
Written by Shawn Elaine Anderson for the RSDSA blog.
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
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:
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].
