10 Tips to Patient Advocacy

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

Advocating for Yourself
When I think of advocacy, my mind generally goes to things like letter writing campaigns and meetings with legislators. After all, advocacy is defined as “pleading on someone’s or some cause’s behalf”. Before advocacy can truly be effective we need to learn to advocate effectively for ourselves. 

Self-advocacy is the ability to communicate what your needs are.*It’s being able to describe your condition concisely while knowing you owe no one an explanation.*It’s partnering with medical providers in finding the best course of treatment for your specific needs. *It’s being informed and confident when dealing with bureaucracies like insurance companies and health care systems. *It’s having healthy boundaries with family and friends, so you can say no without guilt, please without shame, and thank you with true gratitude. 

Over the next few weeks I’ll be writing on each of these subjects with the goal of empowering all of us to better advocate for ourselves. RSD/CRPS is painful enough without the stress and heartache caused by unmet needs. 

10 Tips to Patient Advocacy
What is self-advocacy? When living with chronic pain, long-term illness, or a disability, it is often necessary for individuals to advocate for themselves in order to receive the care and resources they need. This may include advocating for themselves with physicians, employers, hospitals, pharmacies, or other groups, such as disability resource offices. Successful self-advocacy ensures needs are identified, personal goals are set, and concerns are shared. Additionally, it can build confidence, ensure informed health care decisions are made, and secure control of ongoing self-care.

What is patient advocacy? Patient advocacy is defined as protecting the interest of a patient through various means, including defending their rights, protecting against inadequate health care, providing support (e.g., financial, legal, emotional, etc.), and contributing to health care decision-making. A patient advocate may also provide caretaking, assist in the navigation of the health care system, and promote patient protection. There may be times when self-advocacy is not enough and finding support from a patient advocate is necessary. Hospitals frequently have patient advocates on staff, and you can also find freelance patient advocates who will support someone faced with a complex medical or legal bureaucracy. However, a patient advocate could also simply be a friend or family member who has been informed of the needs and challenges faced by a patient and has stepped up to support them in getting their needs met.

Becoming your own health care advocate Self-advocating can be intimidating; however, there are several ways to ensure it is a simple and successful task. These include, but are not limited to, the following:

1. Know your rights. Individuals with chronic conditions or disabilities have equal rights that are protected by law. Understanding these rights is essential for successful self-advocacy. Individuals can research these rights themselves or with the help of a lawyer or professional patient advocate.

2. Keep detailed records. Documentation, such as diagnoses, medications, treatments, test results, specific accommodation documents, and medical letters, should be readily available. Keeping these records organized and easily accessible is vital. Many health care systems and medical offices offer online portals or apps where individuals can view their appointments, prescription refill requests, vital signs, test results, and other important information. It is also helpful to obtain a CD of any MRI’s or CT scans. This allows individuals to be committed to their health care by reviewing this information, asking questions when needed, or pointing out inconsistencies or errors.

3. Prepare ahead of time. Prior to appointments or meetings, individuals should know their goals and desired outcomes. Specific needs and discussion topics should be prioritized in case time is limited. Advanced preparation can ensure appointments and meetings are productive, while also reducing nervous energy.

4. Ask questions. Individuals should ask questions to help avoid misunderstandings. They should never be ashamed of asking questions or requiring explanations. If a provider does not have an adequate answer, ask who is the best person to get the information you need. Frequently nurses are an excellent source of information and can guide you to the right people for answers.

5. Do research. Individuals who are able should research their diagnoses, treatment options, needed tests, future procedures, and medications. This can be done at a local library or online using only reliable and professional websites. A provider may offer a reliable website for research purposes. This can help individuals understand medical terms used by professionals or the aspects of treatment described.

6. Be assertive. While self-advocating, individuals should be active listeners, focusing on what a provider is saying rather than mentally preparing questions while the provider is speaking. They need to avoid letting emotions overwhelm the situation. They should not be afraid to voice their concerns if they disagree with a statement or decision. They should remain calm but also be firm.

7. Get information in writing. The process of writing helps the brain retain information. Sharing information in writing also helps ensure all parties are in agreement. Written documentation is good to have for future reference. Other options include asking if the provider is willing to have the appointment recorded (depending on the legal status of recording in the area), or take a family member or friend as a note-taker.

8. Believe in yourself. Individuals know what they need. The patient is most often the best source of information about what is going on in their body. Confidence is an essential part of self-care and advocacy.

9. Practice the three P’s. If phone calls or messages are not being returned or requests are not being fulfilled, individuals should practice the three P’s: being PATIENT, being PLEASANT, and being PERSISTENT. Medical professionals need a reasonable amount of time to respond to messages and requests. However, if an excessive amount of time has passed, individuals should politely and pleasantly repeat the request or ask if there is someone else who can assist them. Individuals should persist until the need is met.

10. Consider this relationship as a partnership. Most providers truly want to see their patients health improve. Avoid adversarial comments and attitudes. Give your provider the respect they deserve, and expect to be treated with respect and dignity. When you come to a provider prepared and equipped to have an informed discussion, you will see a difference in how you are treated and how the quality and effectiveness of the appointment improves. 

Sources: WebMD, U.S. Pain Foundation

Advocacy Update on S.2922/H.R.7164, The Advancing Research for Chronic Pain Act 

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

Chronic pain and high-impact chronic pain are major burdens on the United States population and economy—leading to patient suffering, loss of productivity, as well as increased health care and disability costs. However, the Centers for Disease Control and Prevention (CDC) does not regularly analyze or publish comprehensive population research data on pain, as it does for other major diseases. This needs to change.

High-quality data is crucial to identify trends, risks, and consequences of pain, and to inform interventions aimed at improving care and patient outcomes while reducing costs to the U.S. health care system.

The Advancing Research for Chronic Pain Act, S.2922/H.R.7164, is one of only a handful of bills ever introduced in Congress for people with pain. This bill would facilitate the creation of a public website for sharing aggregated and updated comprehensive population health data on chronic pain.

We are asking you to take action today by emailing, calling, and/or tweeting your federal senators and representatives, and: Requesting that the Senate hold a full vote on the SUPPORT Act reauthorization, which includes this bill.Requesting that members of the House of Representatives co-sponsor H.R.7164, the Advancing Research for Chronic Pain Act.

It is through taking action by using our voices that we can bring about change. Thank you for participating in this critical advocacy effort. Here, you will find resources to help you quickly and effectively contact your legislators via email, phone, and social media.

We need consistent, high-quality data to gain a better understanding of the public health problem of pain, and to guide efforts to improve care and reduce related expenses. Currently, we lack data on the following related to chronic pain:

  • Frequency and occurrence of pain conditions
  • Demographic information such as age, race, gender, socioeconomic status, and geographic location
  • Effectiveness of evidence-based approaches
  • Utilization of medical and social services
  • Both direct and indirect costs
  • Risk factors, coexisting conditions, and health outcomes

Chronic Pain Facts & Figures:

  • Chronic pain is an enormous public health problem.
  • The number of Americans impacted by chronic pain is staggering: 51.6 million Americans, or 20.9% of U.S. adults, experience chronic pain, according to a 2023 CDC report.
  • Of that number, 17.1 million experience high-impact chronic pain that interferes with the ability to function on a daily basis.
  • Musculoskeletal pain is the leading cause of disability in the United States.Chronic pain has been linked to depression, anxiety, substance use and misuse, and double the risk of suicide.
  • New cases of chronic pain now outpace those of diabetes, depression, and high blood pressure in theUnited States.
  • Two-thirds of military veterans report living with chronic pain.
  • 78% of Medicare beneficiaries, and 89% of Medicare beneficiaries under age 65, live with chronic pain.

Please write or call your congressional representatives today and ask them to support S.2922/H.R.7164, The Advancing Research for Chronic Pain Act.

You can find your House representatives and Senators by entering your zip code on https://www.house.gov/representatives/find-your-representative and https://www.congress.gov/members/find-your-member

References, citations, and sources found in this resource can be viewed at https://uspainfoundation.org/advocacy/advancingresearchact

RSDSA’s Concerns With the Project Rare Act and the Promising Pathways Act 2.0

To our friends and colleagues in the CRPS Community, those in the wider Rare Disease Community and to the Representatives and Senators of Congress who are concerned for the welfare of people who suffer rare diseases:

The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) represents the interests of people with Complex Regional Pain Syndrome (CRPS). Pursuant to its mission of support, advocacy, education, and research, RSDSA seeks to promote safe and effective treatments for CRPS and to advocate for insurance coverage for such treatments. Therefore, RSDSA is encouraged by two pieces of proposed legislation, the Protect Rare Act, which mandates insurance coverage for FDA-approved treatments for rare and life-threatening diseases, and the Promising Pathways Act 2.0 (PPA2.0), which amends Title 21 to provide for time-limited FDA approval of treatments for rare and life-threatening diseases, which have phase 1 evidence of safety, complete or ongoing phase 2 evidence of safety and a minimum of pilot (probable) evidence of efficacy.

RSDSA supports both bills in principle. RSDSA holds that our concerns over the weaknesses of these bills can be resolved. RSDSA is concerned by the disagreement that has arisen between Senator Braun’s office, a sponsor of PPA2.0, and the National Organization of Rare Diseases (NORD). NORD opposes some features of PPA2.0, and, therefore, its passage. RSDSA contends that a cooperative, conciliatory resolution to any conflict is possible. NORD has been a steadfast and respected leader of the rare disease community, and its concerns must be considered seriously.

RSDSA’s concerns with Protect Rare and PPA2.0 are twofold:

First: Both Protect Rare and PPA2.0 mandate insurance coverage for FDA-approved treatments. On the other hand, rare diseases are often treated with treatments off-label. Ketamine is a particularly important example of a drug that is approved by the FDA, but not for CRPS. Protect Rare specifies “approved” treatments only. The wording of PPA2.0 is ambiguous, but a reasonable interpretation of the text indicates that only new drugs are eligible for the time-limited approval that PPA2.0 provides. Neither Protect Rare nor PPA2.0 provide a mechanism to repurpose and relabel ketamine (or any other treatment for any rare or life-threatening disease) to mandate insurance coverage.

A resolution to this concern would be the deletion of the word “new” [drug] from the legislation, so that PPA2.0 provides a pathway for FDA approval of any drug, currently used off-label, for the treatment of CRPS (or any rare disease). Consequently, the relabeling of such drugs would make them eligible for insurance coverage under Protect Rare.

Second: The limited evidence of safety and efficacy required for FDA approval of treatments under PPA2.0, a dispositive concern for NORD, can result in potential or real danger to patients and wasted time when ineffective treatments have not been properly, and repeatedly studied in scientifically robust trials.

A potential resolution of this concern lies in PPA2.0’s requirement that applicants for approval of a drug or device maintain a registry of patients receiving the treatment. This is an ideal application for artificial intelligence (AI), which continually monitors the registries (faster and probably more accurately than a human “patient safety committee”). Using a comprehensive set of outcome measures, AI monitors symptoms and signs of treatment response and adverse effects of the treatment. This real-time monitoring is inferior to evidence generated from randomized, controlled trials of safety and efficacy, but it may suffice.

RSDSA desires both approval of safe and effective treatments and mandated insurance coverage for them. RSDSA calls on all stakeholders in the rare disease community and Congress to come together to resolve differences and concerns to entail full, universal support of this groundbreaking legislation.

Sincerely,

RSDSA Board of Directors

Feel free to send any feedback on this topic to RSDSA directly via [email protected].

Stellate Ganglion Blocks for Complex Regional Pain Syndrome

Written by Dr. Allison Wells for the RSDSA blog.

Stellate Ganglion Blocks (SGB) can be an excellent treatment option for Complex Regional Pain Syndrome (CRPS). Recent advances in medical technology have significantly enhanced the procedure, extending the possibility of relief to more people.

What is a Stellate Ganglion Block

The stellate ganglia are bundles of nerves on either side of the base of the neck associated with the sympathetic nervous system. A stellate ganglion block – also called SGB, sympathetic nerve block, or sympathetic nerve reset – is an anesthetic block of the nerves limits the signals conducted through those nerves. The procedure involves the introduction of a local anesthetic to the general area, and then targeted injections at the site of the nerve bundles. One side of the neck is treated at a time. The number and frequency of treatments varies, but can be as little as one block on one side of the neck (we start with the right-hand side), often two (one on each side of the neck), and frequently additional treatments in a series depending on the 

SGB works by temporarily blocking the sympathetic nerves in the neck, which are part of the autonomic nervous system responsible for “fight or flight” responses. CRPS is believed to involve abnormal responses of the sympathetic nervous system. By blocking these nerves, SGB can significantly reduce pain and other symptoms associated with CRPS.

SGB for CRPS

The procedure can improve pain scores for many people with CRPS. It is generally more effective for individuals with CRPS type 1 (where there is no clear nerve injury) vs type 2 (where there is likely or confirmed nerve injury). It is particularly beneficial for those suffering with pain manifesting in the upper extremities. As with many potential treatments for CRPS, it is difficult to know if SGB will be a good fit for any one person – due, in part, to the variable potential causes and presentation of CRPS. There is moderate but growing research on SGB for CRPS. Small studies have shown as high as 90+% of participants with CRPS receiving benefits from the procedure, but it is important to know that the effectiveness for any one individual is difficult to estimate with any great certainty.

Other Benefits of Stellate Ganglion Blocks

Stellate ganglion blocks have been studied and used for other conditions including some other types of pain conditions, anxiety and PTSD. This makes the procedure particularly interesting for individuals with CRPS who also suffer from PTSD 

Historical Context and Technological Advancements

Historically, the administration of SGB required the use of x-ray guidance to ensure accuracy or could be done ‘blind’ without the use of image guidance. A blind block in this area has the high potential for adverse consequences, including with complications due to the proximity of the vertebral artery. X-ray guidance, although effective, poses risks due to radiation exposure and typically required sedation, which could complicate the recovery process for patients. The evolution of ultrasound technology has revolutionized the procedure. Ultrasound guidance allows for real-time, precise visualization of the needle and surrounding anatomical structures without the use of x-ray radiation. This advancement not only enhances patient safety but also simplifies the procedure, making it faster and easier to perform.

Benefits of Ultrasound-Guided SGB

One of the significant benefits of ultrasound-guided SGB is the elimination of the need for sedation. Patients remain awake and comfortable throughout the procedure, which typically takes only a few minutes. The non-invasive nature of ultrasound means that patients can leave the clinic immediately afterwards without the lingering effects of sedation, and they are able to drive themselves home. The consultation and procedure typically take from 20 to 40 minutes in my practice, and patients are often in the office for 60 to 90 minutes for their appointment.

Side Effects

While there are certainly potential risks associated with this medical procedure, the ultrasound-guided method in the hands of an appropriately trained and credentialled professional can significantly limit risks.

Common and typically-transient side effects include temporary soreness at the injection site and a set of symptoms generally described as Horner’s syndrome. These symptoms are characterized by drooping of the eyelid, decreased pupil size, and reduced sweating on the affected side of the face. These effects are generally temporary and resolve without intervention.

A useful, and accessible treatment

The Stellate Ganglion Block is a very interesting block whose benefits go beyond those of many other types of blocks. It is useful for a variety of conditions and can be a real benefit to those with CRPS and some other pain conditions. For that alone, it may be useful, and for its ability to also potentially help with PTSD and anxiety it can be even more useful.

Advances in the portability, quality and cost of ultrasound equipment has allowed for ultrasound-guided the SGB procedure to be more effectively and safely completed in the office setting. When combined with expertise of an anesthesiologist trained and experienced in these technical blocks it is a powerful and accessible treatment option. I’m very glad to be able to offer the procedure and very glad to help people suffering with chronic symptoms. If you’re interested in more information, you can start with our page.

About Dr. Allison Wells

Dr. Wells is an anesthesiologist and an experience-leader in ketamine treatments for mood disorders and pain conditions. She founded one of the first focused clinics in the country, has helped many patients with many thousand infusions, and actively contributes to the field with research and advocacy. Wells Medicine, in Houston, TX, provides interventional procedures and a focus on comprehensive mental health toward excellence in evidence-based care.

Dr. Wells holds degrees from Swarthmore College and Baylor College of Medicine. She trained at Baylor College of Medicine and Harvard Medical School. She is a member of the American Society of Anesthesiologists, The Texas Society of Anesthesiologists and the Texas Medical Association. 

Wells Medicine, Houston, TX | wellsmedicine.com

If I’m Dating Someone, They Are Going to Have to See Me on My Bad Days

Written anonymously for the RSDSA blog.

CRPS is a rare neurological condition that can be very hard to treat. Getting a diagnosis can be very difficult as doctors do not know where it comes from. Each case of CRPS is completely different and studies show that cases are 85% female. CRPS is not something you are born with; it usually develops after some sort of physical trauma. I am a young male adult with CRPS. I try to live my life to the fullest, each day is another fight and I will continue to do everything in my power to find joy in life.

One of the toughest things about CRPS is maintaining relationships. CRPS is so rare and poorly understood. It’s hard enough to find doctors who understand what you go through. Maintaining relationships with family and friends can be extremely difficult. Most people do not understand what we go through which makes it difficult to hold relationships and develop new ones. The dai;y pain is ranked a 42/50 on the McGill pain scale, which is higher than the pain of childbirth, cancer, and other temporary or chronic pain.

Friends and family are extremely important in life. They can provide support and companionship. Unfortunately, these relationships become very strained which causes loneliness and depression.

Dating is one of those things in life that is very difficult. Most of us want the companionship of another person who can come into our lives to add support and serve as a best friend who understands what you go through. Even those who do not suffer from CRPS have trouble dating.

Dating while suffering from CRPS is extremely difficult. I have been suffering with CRPS since I was 15 years old. I did not receive a diagnosis until I was 23. I went to college and had a long-term relationship from the age of 18-25. The woman I was with really did not have to worry about the pain I was going through as it was something I was able to manage.

I knew what I had to do to get through each day and I was able to live a pretty normal life. I received a four-year degree in restaurant management and went on to manage restaurants after college. I dealt with the pain and did not share my struggle with anyone. When I was 23, my pain became unmanageable. I had to stop working and I received many surgeries in hopes of taking my pain away for good. It added a lot of strain to the relationship I was in and after eight years my girlfriend left me. Still to this day she claims that the pain I was going through had nothing to do with the reason we broke up. The pain affected every part of my life, especially the relationship I was in. I was barely able to manage my day-to-day, let alone my relationship. For a few years, I focused on myself and did what I had to do to get myself back to some sort of life.

What I went through was extremely traumatic. Surgeries, treatments, and therapy filled my days and I was not able to go out and enjoy life. After a few years I started to get very lonely and decided I would start dating again, something I had not done very much of.

Dating without CRPS is extremely difficult in today’s climate. Most people meet their significant other on dating apps. At the time, I was 25 years old and had no idea what I was doing. I went on all the different dating apps and tried to find a significant other that I could share life with. Without any preparation or guidance, I built my online dating app profiles and started communicating with women since I was unable to work and I did not have any places I could go to meet women.

I assembled my photos and built my profiles, but I had no idea what to do or say. One of the first things these apps ask you is what your job title is. You also have to fill in sections where you share your interests, passions, and hobbies. Unfortunately, I did not have a job title as I was/am unable to work. I also could not go skiing, play tennis, or play golf, activities that I enjoyed doing pre-diagnosis. The pain that I was going through was too painful to engage in these activities. How was I supposed to fill in these sections of my profile? What were women going to think when they saw no job title or hobbies? Who wants to date a guy that doesn’t work and can barely take care of himself let alone be with someone else?

I am one of the rare cases of CRPS where I do not suffer financial hardship even though I am unable to hold a job. I am lucky that I have financial support from my family. This does not take away from the fact that I do not make my own money from a job. I knew it was going to be an issue as women want someone who has passions and interests and holds a job that can provide financial independence. I did not think it mattered that I couldn’t hold a job being that I am in an amazing place financially. I can do as I please in terms of going out to dinners, traveling, and purchasing things for myself and others. I can go out to fancy dinners, do luxury travel, and purchase things I want for my life. As I started dating, I started seeing how young women perceived me.

Unfortunately, at the age of 26 I was not able to go out and build my career. Aside from that, I had to deal with all the other issues that come with a CRPS diagnosis. Each woman I have dated has had their own issues with what I go through. I did not hide the condition from anyone as I did not think it would be fair. However, I also did not share all the struggles that I went through as I did not want to scare anyone away. What do you share? How much do you tell them? How do you get them to understand what you go through? These were all things that I struggled with as I got further into the dating world.

Just getting to the first date from dating apps can be very difficult, let alone when you are dating with CRPS. Most of the women I spoke to would disappear after I told them pre-first date about the diagnosis. The women that I was able to meet in person did not understand my struggles and really did not want to get involved. One of the first women I dated was very kind and also suffered from a condition of her own. After a few dates she became very focused on the fact that I did not have a full-time job. She had financial issues in her family and was very worried that I would not be able to provide for her in the event that we got serious. She stopped seeing me after about five or six dates, solely because I did not make my own money from a job that I went to. I took her on nice dates and even brought her to a Taylor Swift concert. But this was not enough and she decided not to continue seeing me. On to the next one.

The next woman that I dated shared similar issues that I did in terms of family. I have a brother who had a traumatic brain injury and she had a brother who suffered from a neurological condition of his own. I thought this would bring us together as we both dealt with similar things. I still remember sending her a picture of myself and did not notice that my medication was in the background. She saw how much medication I take and was immediately taken back. After a few dates, she decided she did not want to continue seeing me as a result of this. On to the next one.

The next woman I met was extremely kind and caring. She knew what I went through to some extent. One day, I sent her a picture of myself with four heating pads on after going out with my friend for the day. She really did not know how bad the CRPS was, but when she saw how I was struggling so much just from one outing, she was also taken aback. She loves hiking, going to amusement parks, and being active. These were all things that I was unable to do. She decided that the relationship was not worth pursuing as she knew she would not be able to share her hobbies and interests with me. On to the next one.

I felt so defeated after each failed relationship and continuing on was becoming very difficult. I took a break for some time and when I came back to it I still had the same issues. A lot of the women would listen to me when I told them about the condition but they truly did not know what it entailed. Some of the women would see me on my good days, not the bad ones. I showed them my best self and sort of hid the struggles I went through as I didn’t want them to see the terrible struggle I was going through. I thought it was my battle and sharing the extremely tough things I went through was difficult. I felt embarrassed telling them that most of my days are spent resting and doing therapies or surgeries. They would ask me what I did all day and I really did not have a good answer. It’s not that I don’t want to work or do all the things I loved to do, its that I can’t.

I deal with so many side effects from the medication and pain that just managing each day is tough. People cannot understand something unless they go through it for themselves. Nobody could feel my pain and I didn’t want them to. At the same time, if I’m dating someone they are going to have to see me on my bad days.

One of the women I dated thought I was in remission as she saw me for the few good hours I had in a day. Once she saw how bad the condition was she was quick to depart. On to the next one.

There was a woman from college that I was very into at the time. We shared many similar hardships and although we never dated, we had a wonderful friendship. I tried reconnecting with her and even visited her at her home for a weekend. Unfortunately, there are many side effects to the medications I take to get through my day. Sexual side effects can be a problem for a lot of men but they are even harder for someone on so much medication. I could not be a normal young adult male in that department and that was a big issue for her. She also did not like that I was unable to make my own living. She never really told me why she didn’t want to continue seeing me, but things got very awkward after our first sexual encounter. After our first night together, she slowly started pulling away. Although she never told me why she didn’t want to continue seeing me I could tell. On to the next one.

Seeing women from my college years was a way for me to reconnect and maybe have a relationship that I couldn’t have during that time as I had a serious girlfriend. The next woman I reconnected with was a good friend from those years. We had a few great dates together and I took her to upscale spas and restaurants. But once I told her I was unable to get to her house in another state, she became very upset. She did not think I was putting in enough effort. She saw that I was able to do things such as travel to another country with my family, but I was unable to visit her at her home. I tried to explain, but she did not understand. She slowly pulled away. After a year of not speaking, I reached out to her to see how she was doing. She apologized to me as she was dealing with some physical pain from a recent ski accident. She said she really had no idea what I went through and now she had some understanding as she was dealing with her own pain. However, the relationship was already past due and I was not going to see someone who had treated me that way. On to the next one.

My last relationship was with a woman I also met online. We went on a few dates and things were starting to get semiserious. I was trying my best to be the guy I thought she wanted, even through all my struggles. I took myself out of my comfort zone and tried to be a normal 34-year-old adult. I thought I saw a future with this woman as I was sharing my struggles with her and she was sticking around. After our sixth date, she started asking more questions about my job situation. She asked me what she should tell her friends when they ask what I do for a living. I thought we were way past that conversation, but I was wrong. She did not know what to tell these friends and I knew it would become a bigger issue when she would have to tell her parents, who were both doctors. I tried explaining to her that I did not have to worry about things in the finance department and neither did she. She was concerned that she would have to support me and things started to go south. The relationship did not pan out. On to the next one.

I even tried dating women who had the same condition as me. However, as I said no case of CRPS is the same. These relationships did not pan out either. In addition to the failed online dating scene, I was also unable to meet someone in person. My friends or family have never tried to set me up with someone as they know how incredibly difficult my life is. I’m sure they don’t want to get involved in the situation as they do not even understand what I go through.

Although I have been unsuccessful in the dating scene, I continue to go out and try to meet a partner. I made the choice that I will continue to fight this condition and everything that comes with it. Although I have been unsuccessful, I continue to go on the apps and try to meet someone who can understand what I go through. On to the next one…

I Am Grateful for What I Have, but Sad About What I Lost

Written by April C. for the RSDSA blog.

In July of 2020, my son, who was 10 at the time, and myself were riding a four-wheeler in a remote area. The ATV went off the road and I did not want to tell my husband what happened. I attempted to get it out of the ditch. I was not able to, and the four-wheeler went up on its back two wheels and fell on top of me. In this moment it was one of the scariest times of my life. I thought my life was over and my son was going to witness it.

My brave son called 911 and then pushed the four-wheeler off me, despite my objections. The accident resulted in a head injury which I was later diagnosed with moderate Major Neurocognitive Disorder. I went back to a sixth grade education and my short and long term memory has been affected. I also have speech issues. I misplace words and sometimes what comes out of my mouth is not what I really want to say. I also had a hand injury, which ended up being my first limb that was affected with CRPS.

I have mental health issues Major Depressive Disorder, Anxiety, Adjustment Disorder, and PTSD. Life has not been easy. My journey is no different than anyone else’s, chasing a diagnosis and KNOWING something is wrong. I will never forget when I received my CRPS diagnosis… the neurologist looked at me and said, “do not go home and look this up. What you are going to read is bad.’” You can guess that I did not even make it to the car, and I knew all about CRPS.

The emotional toll of the accident, my head injury, and now CRPS was all too much. At one point I was going to kill myself as I did not want to live this way. I knew how I was going to do it and I came close. However, that boy saved me again and I decided to fight for him.  

I started my CRPS journey just like everyone else: pain management, tons of meds (21 pills a day), and nerve blocks. I stopped at the spinal cord stimulator after polling our group on Facebook as I knew there was a 50% chance it would work. I was not willing to have this in my back and I was going to figure this out myself. My mom insisted that I go to the Cleveland Clinic even though I knew it was going to be the same thing. As I suspected, they recommended a spinal cord stimulator and ketamine. Ketamine was not an option for me because the out-of-pocket cost was not in my financial reach. I also worried about my depression because it was bad and whether I would be the one that had a terrible experience. I then joined every support group on Facebook and spent many weeks reading other people’s experiences and trying to figure out how to survive.

Most of it was depressing, then one day there was this man who was once in a wheelchair and he was working out and functioning like an everyday person. Seeing him get out of the chair and what he had accomplished was inspiring. I then started seeking out those who were like him (there were only a few, but they were there!). They all reported a good life through diet, exercise, therapy (both physical and mental), and alternative treatments. I got myself an OT and a therapist for my head and quit all medication. I remember being in tears begging my family doctor to take over my care. He looked at me and said, “April, I know nothing about this illness. I am not the doctor to treat you. You need an expert.” I then told him he didn’t need to know anything and that I knew enough, and he can help me. To this day, he supports me and my journey with CRPS. He has been a blessing. 

I went through three mental health therapists before I found one. She told me recently that the first time I was in her office I was so guarded she thought I would never come back. In the beginning we focused on my illness. One of my first “assignments” was listening to Louise Hay’s “Heal Your Body” for thirty days. I could listen to it even when I was doing something as it was important for the subconscious to hear it. When I first started, it would bring me to tears. I lived a very trauma filled life, some self-imposed and some not. I continue to work with her to this day I have learned how to mentally manage my illness, love myself, get out of a very emotionally abusive marriage, and everything in between. There is also a book called “Unlearn Your Pain” and it discusses how if you heal your emotional trauma, you will heal your pain. This was some intense work, but I did it and I am glad I did it. My mental health has become more stable, and I now have the coping mechanisms to deal with my pain. 

I found the best PT a CRPS patient can ask for; she heard me and read me quickly. She knew I was a pusher (my desperation to feel better consumed me) and that at times my “push” harms my body. Remember that balance is key! She was just as invested in learning about my illness as I am, and she changed my physical health and how I approach it. She also got me back in the gym (nothing like the guy I saw a while back!), but just minimal activity combined with PT. I have been with her for four years now and we continue to track my progress. She has had three PT students with her and one did his paper about me. I feel lucky to have helped shape three future PT’s and teach them about this illness.

A year into my diagnosis I was at my son’s baseball game. We were in a dome and the floor was wet, I slipped, fell and sprained my ankle. Later that day, we had plans to take our son to his first Tiger’s game. I knew what my sprain meant: CRPS in my foot. I cried the entire drive. My ex-husband told me I was making a bigger deal of it, and I allowed him to push me that day. He was only concerned about taking our son to a game and for the same reason I did not want to call him to get the four-wheeler out of the ditch, I walked on my foot. I also did not seek treatment soon enough. The pressure I was feeling at home to “perform” was making me anxious and all I wanted to do was to make him happy. I never want to be a burden on anyone. I regret going to that game and not having a voice to speak up. My foot will forever be a constant reminder of this.

I live in a small town in Michigan and by luck I have found the most incredible mental health therapist, PT, and doctor. They have all been invested in me and they listen. I am beyond grateful. My support outside of the medical field has also helped me. The loneliness of this illness can be self-defeating. I am grateful I have friends and family who have encouraged me and supported me throughout my journey. I also have my forever hero, my son. None of this would be possible without him. I am grateful for what I have, but sad about what I lost. I continue every day to fight (some days are a lot better than others) but somehow, I keep making it through. I have learned to put on a “face” for the world and I’m good at masking my illness.

CRPS is no cake walk for any of us and there is no “right” answer for treatment. I believe each one of us has to find their own way. My way might not work for you. My personal goal is to find the answer to help us live a better quality of life. I am determined. I also want my brain donated to CRPS research. I hope that with my determination I can live a better quality of life and help others like me. For me that means a steady pain level of 6/7, PT/mental health therapy, and doing my best to keep my mind from going into a deep depression (this one is hard to master). In July, it will be four years since the accident, and I can look back and say I have made tremendous progress. Life is NOT easy, but I try and remain as positive as someone with CRPS can be and for the days I cannot muster up the strength, I look at my son, and know he is worth it all.

Reach out to April on Twitter/X via @aprilcowell19.

The ADA Believes in Us

Written by Dr. Nina Slota for the RSDSA blog.

The ADA believes in me and you, because in work-settings it grants us reasonable accommodations if we are “otherwise qualified candidates,” meaning we have the skills for the job, but our disability gets in the way. Accommodations are our civil right; they level the playing field so we can show what we can do. I’ve used the ADA numerous times in school and work settings, so I want to tell you about my experiences and what I’ve learned. 

Before we get to my story, let’s start with the current definition of disability: “(A) a physical or mental impairment that substantially limits one or more major life activities. . . (B) a record of such an impairment; or (C) being regarded as having such an impairment. . . .” That brings us to the definition of major life activity, which can be activities or biological functions, including, “caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working [among others]” and, “. . . functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions [among others].” Under the law, even if our symptoms come and go, we’re covered; similarly, even if we use medications, devices, assistive technology, or have figured out unique ways to get things done, we are covered.  

Back to my story. By 1990, I “only” had inflammatory bowel disease and osteoarthritis. I was a busy college student; I wasn’t paying attention to politics. Even if I had been aware of the ADA, my younger self probably would have said that I was chronically ill but not disabled. My day-to-day reality was that I hadn’t told my professors, I didn’t have any academic services, and only my closest friends knew about my illnesses. 

The first time I used the ADA was in 1993. I was a first-year graduate student and Meniere’s Syndrome (a vertigo disorder) had joined my life; additionally, prednisone for my IBD was again readying to cause chaos. Current college students shouldn’t recognize the process I followed back then: I talked to a prof, he told me to talk to the Dean, and the Dean sent me back to each prof. No paperwork was needed; agreements were made with a handshake.

At the end of the year, I transferred graduate schools; my new school had a disability office run by a lawyer. She wasn’t there to help students; she was there to file documentation. I used the ADA several more times throughout my schooling for my comprehensive/doctoral exams. My accommodations included extra time, a private room to take the test in, and the ability to use the restroom. In 2005, while still a student, I was injured as a pedestrian and diagnosed with RSD/CRPS. It was in my left leg and has fortunately stayed there.

When I became a professor, my office happened to be closest to the elevator and bathroom; there was no need to use the ADA. During lectures, I’d lean against a wall, shift between my feet, and/or use my arms to put much of my weight on the lectern. My students could see my TENS unit; my juniors and seniors knew lumbar block days meant I’d sit and we’d watch and discuss videos.

In 2014-2015, I was treated for cancer—surgery, chemo, and radiation. Like 50% of adults with cancer, I kept working. Because of my CRPS, I was at an increased risk for lymphedema, which is swelling due to missing or malfunctioning lymph nodes. Sure enough, my lymphedema developed during finals week in December of 2015. Luckily, I was already receiving PT for my CRPS, so my amazing physical therapist started my lymphedema treatment within 24 hours of symptom onset. My right, dominant, arm was wrapped in bandages from my fingertips to my shoulder. Because I couldn’t type quickly enough to write my syllabi, I needed work accommodations. This time, I requested speech-to-text software; it eventually arrived. The following spring, I fell on ice and broke my good arm, which required surgery. In addition to the regular anesthesia, the anesthesiologist also gave me a ganglion block; thankfully, my CRPS did not spread. Nevertheless, with neither arm functioning too well, I again needed accommodations. 

Then, 2020 happened. For several years, I had been on immunosuppressants for my inflammatory bowel disease; therefore, I was at high risk for COVID, especially before the vaccines. My school moved online for spring 2020. I realized how much teaching from home changed my life and increased my productivity. I could manage my IBD better, because I was 10 steps from the bathroom (which never had a line) and I was 35 steps round-trip from my fridge. What I hadn’t expected was that I could manage my CRPS better; I could wear socks or slippers for my CRPS, and I didn’t have to worry as much about falls or my balance because I knew where every uneven spot in my floor was. I could keep my home office as warm as I needed. By the end of the day, I wasn’t as fatigued from my CRPS. I taught remotely for an additional two years. 

I left academia in 2022. With the support of my county vocational rehabilitation office, I received re-imbursement for life coach training and have started my own life coaching and consulting business, Voyage Through Disability. Now, I can set my own hours, control my own environment, and I don’t need to file ADA paperwork with myself! 

What is the ADA paperwork process? Please remember that I am writing this as someone who has used the ADA repeatedly, but I am not a lawyer or a human resources administrator. The accommodations request process varies a bit by company, so check with your employer. However, there are some commonalities. Typically, you’ll need documentation from one or more medical or mental health professionals, and you may have to write something yourself. The key points are to show that you have a diagnosis, that it interferes with one or more major life activities, and that the accommodation you are requesting is related to your disability’s interaction with your job. For example, perhaps your CRPS means you have trouble standing, but you have a job as a cashier. You can use the appropriate paperwork to ask your company to provide you with a stool, so you can sit when needed. Hopefully, your company will quickly approve your paperwork and you’ll be sitting on the company’s chair within days. I should note that in this example because a physical item was being requested, your local vocational rehabilitation office might be able to help. 

However, the business can claim that the accommodation you have requested will create an “undue hardship.” Often, but not always, this is based on financial issues. A stool can be relatively inexpensive, but if you had asked for a specific, ergonomic $1,200 stool, the company could say it would be a hardship to afford. If the issue isn’t resolved, the decision goes through an interactive process, in which you and the company’s ADA administrators try to reach an agreement. If it is reached, you or the administrators will inform your supervisors. 

However, what happens if the process doesn’t go smoothly? The answer might be to have a free consultation with an employment lawyer. You could also contact the Job Accommodation Network, your state’s resources, or the federal Equal Employment Opportunity Commission (EEOC) office for your region. Any or all of these information sources may help you understand your rights and which steps you feel comfortable taking. If you decide to proceed, you may want to hire a lawyer. Some employment discrimination lawyers will want a partial payment in advance; others will understand that you don’t have the resources and will take a percentage of your eventual settlement. Unlike in medical malpractice cases, the money IS taxable, so keep that in mind. 

If you decide to officially file your case with the EEOC, your employer will be informed instantly. Using the EEOC system, your employer may ask if you’d like to try mediation. If you have a lawyer, talk to them before you decide. If you aren’t willing to mediate or the mediation fails, the EEOC will make a ruling as to how strong they think your case is. If it’s a really strong case and has federal implications, the EEOC will become your lawyer. More often, they will simply tell you that they think you have a case, but that a jury may not agree. On TV, court cases are resolved in an hour; in real life, depending on the number of appeals, cases can take years.

Whichever level of decision-making you are facing, please remember that the ADA was written for us and believes in our ability to hold down the right job. Accommodations aren’t special treatment; they are a civil right that people peacefully protested for.

Personally, I am much happier now that I am running my own business. I can organize my environment to fit my needs. Please visit my website to explore my services, including life coaching for adults with chronic pain or other disabilities, academic life coaching for undergraduate or graduate students, and corporate consulting about the ADA for small-to-medium sized businesses.  

Dr. Nina Slota was trained as a research developmental health psychologist. She taught graduate and undergraduate students and is now founder and president of her company, Voyage Through Disability. If you have any questions, please contact her at [email protected]. 

Ten Questions With Jim Broatch

Written by RSDSA Intern Samantha Rose

How did you start working for the organization?
In the 1990s, I was working on the board of the National Organization for Rare Diseases (NORD). During this time, Dr. Robert J. Schwartzman convinced Roe Davis, Frank Davis, and Audrey Thomas to start the RSDSA Organization to support CRPS warriors. In search of a skilled and compassionate person to lead the organization, Mrs. Davis called Abbey Meyers, the founder of NORD, who recommended me for the position that I feel grateful to have had for the past twenty-five years. We then brought the organization to Milford, Connecticut.

How has the organization and its mission changed over the years?
When RSDSA first began, it had a newsletter, just as it does today. However, the newsletter today looks much different, and serves a very different purpose. Back then, it was filled with personal stories of “woah” about the struggles of CRPS. However, we have since changed the newsletter to make it a more informative and supportive outlet for CRPS patients, focusing on educating and giving hope to those with CRPS. “Hope” has become an integral part of our message and mission, one that we have– and will continue to– expand over the years.

Which aspect of the organization’s progress are you most proud of?
The courses that we have provided for doctors and nurses have been transformative in creating a medical world where more doctors are aware of, have interest in, and have the tools to help CRPS warriors. Additionally, the way that our organization has grown into the national, go-to organization for CRPS is incredible. We have built a patient-friendly community where everyone tries to help each other, regardless of physical distance. Planting seeds of hope has become much easier and more widespread with new social media outreach programs, much thanks to our social media manager, Alexis Johnson. In addition to increasing engagement on our virtual platforms, our Facebook Lives since the pandemic have educated and supported the RSDSA community. This is an improvement from before the pandemic, when we often had in-person conferences with 140-200 people attending. Now, we are able to have 1,400+ people from all around the country listen to guest speakers in their own homes. I am particularly proud of the Jenkins Patient System Program to memorialize Brad Jenkins, whose mom helped to start a fund for people to avoid eviction and get much-needed medications.

Which aspect of being executive director did you enjoy the most?
Often, new CRPS patients spend a quick fifteen minutes with their doctor discussing CRPS when they first are diagnosed, not receiving nearly the kind of education that they need in order to seek help and support. Therefore, being able to educate them, support them, and give them hope throughout their journey has been an incredibly rewarding experience. Whether it be through linking patients with financial support, service dogs, legal aid, medical professionals, or accommodations at work, I loved helping and supporting people. I specifically remember an instance where I was able to get a tank of propane filled for a warrior who could not afford it during a blizzard, and how the simple act created a huge difference in somebody’s life.

Which aspect of being executive director did you least enjoy?
While I loved being able to help people, the hardest moments of my day-to-day job were those when I was not able to provide the kind of help that somebody needed. Often, this came in the form of family members doubting their CRPS and abandoning them, diminishing the web of support and encouragement necessary throughout this journey. It also disappointed me when people did not find RSDSA until they were months and years into their diagnosis with no hope– we must try to reach people earlier in their illness to provide the kind of support they need.

What was your day-to-day life like as the executive director of RSDSA?
Before COVID, I often participated in many calls a day to help warriors when they sought more direction. This has changed, as most inquiries and responses now are sent through email. Every day on the job is a learning experience, as hearing people’s stories and needs allows me to explore what is lacking and how to improve our services. I also look for thought leaders and try to help curate treatment teams of doctors, physical therapists, occupational therapists, and aids for warriors to lead them in the correct direction.

How has the CRPS science changed over time?
Previously, scientists lumped all CRPS patients together for clinical trials, only differentiating subjects by Type I and Type II classifications. However, we no longer conceptualize CRPS as a homogeneous disease, largely due to a subset study conducted by Dr. Stephen Bruehl and Dr. Norman Harden. These doctors are the thought leaders of CRPS science, and have formed a collaborative team with which I have had great pleasure engaging. Through their work, we have been able to create five versions of clinical practice guidelines for CRPS. We also have used science to debunk the evidence-less theory that CRPS is solely psychological, validating the struggles of CRPS patients.

How can we expect the CRPS science to change in the future?
There currently is a study being conducted regarding neuroplasticity and treatments that are brain-based as opposed to targeting the afflicted limb. The Cleveland Clinic also recently received a multi-million dollar grant to evaluate a stem cell treatment for CRPS, with animal and human trials. We are also extremely hopeful about our CRPS subset study, which involves a consortium of three centers in Europe. My hope is that an international CRPS research consortium will come to fruition in the future; of course, this requires overcoming the long-standing challenge of not finding enough patients to participate in these studies.

What do you envision as the future direction of the organization?
For sixty years, ketamine has been known to be an effective treatment for chronic pain, but we have been barred by outrageous prices and legislative issues. This must change, hopefully through the work of the dedicated Jim Doulgeris with the RARE Act. Since 2016, there has been a war on people with pain because of misapplication of CDC and opiate guidelines, and we must fight back. This involves more research on CRPS and other rare diseases, which often is difficult because there is not adequate money to continually fund research grants. In the future, we might need to decide if the organization will mainly focus on research grants or support and education, or find other avenues for continued funding.

What are you most looking forward to during retirement?
I am excited to have more freedom and more time to explore the outdoors and go birdwatching and kayaking. In fact, my wife and I are going to see Christian Cooper, a famous birdwatcher and author, in Central Park. I am also an avid reader. I am excited to continue to give back to the community: my wife and I volunteer at a soup kitchen, and we look forward to other opportunities to help. Overall, I am looking forward to being present each day and treasuring every moment.

FROM THE AUTHOR

Jim, the RSDSA community and my family are so grateful for everything you have achieved and how much support you have provided over the past twenty-five years. Your passion for helping others and creating a better life for people never fails to shine through, whether it be in phone calls, emails, Facebook Lives, and everything in between. We wish you the best of luck and happiness in your retirement.

Best,
Samantha

It’s Challenging to Concentrate When Your Brain Is Always Signaling Your Body’s on Fire

Written by Pain Coach + Chaplain Bonnie Lester, MA for the RSDSA blog.

How and when did you develop CRPS/RSD?

I developed CRPS in 1986 in my left dominant hand and left shoulder after my car was hit by a speeding drunk driver. Two years later in 1988 I underwent a left cervical sympathectomy after repeated stellate ganglion blocks failed to bring extended relief. The surgery spread CRPS from the left side of my neck down to my left foot and left me with a useless dominant hand.

What has daily life been like since your diagnosis?

Since I was diagnosed 38 years ago I have learned the importance of incorporating self-care into my life in conjunction with the treatments suggested over the years by my health care providers. Though I achieved remission 30 years after my diagnosis and have been pain free for nine years now, I raised my son and lived through a divorce and remarriage during the years I lived with high levels of burning pain. I survived three decades of CRPS by following a disciplined approach of taking an active role to incorporate comforting activities in my day. This ranged from using a TENS unit, using mindfulness strategies, challenging my negative thoughts, and listening to soothing and uplifting music throughout the day.

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

Some things I’d like others without CRPS/RSD to understand is that it’s challenging to concentrate when your brain is always signaling your body’s on fire. I’d also like them to understand that it’s more helpful to ask, “Can I help you in any way?” rather than saying “I’m sorry you’re in so much pain.”

What advice would you give to newly diagnosed Warriors?

Science has made great advancements since I was diagnosed in 1986. Today there are a wide array of options to address persistent pain and the earlier a person is diagnosed with CRPS and begins treatment the better the outcome. It’s essential for you to learn basic pain education to understand what is known about CRPS at this time as well as learn how persistent/chronic pain is different from acute pain. Science says an optimal outcome in dealing with persistent pain can be achieved using the mind/body approach which includes incorporating healthy lifestyle behaviors such as movement, nutrition, stress management, achieving a restorative sleep, and maintaining positive social connections.

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

I am now in remission after living with CRPS for thirty years. Remission is possible regardless of the length of time the condition has existed.

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

I understand each of us are unique and our experiences with the same treatments may have different outcomes.

What I found most useful:

TENS unit and Soma, a muscle relaxant.

The many different antidepressants and anti-inflammatories I was prescribed barely dialed down the pain. I couldn’t tolerate Neurontin, a commonly prescribed medication for CRPS. I used Fentanyl and Norco for nine years but it didn’t reduce my burning pain. I achieved remission after I learned about neuroplasticity in 2010 and decided to incorporate neuroplasticity exercises into my life.

I used sensory stimulation activities that I created on my own and achieved a pain-free life. I tapered off of all my pain related medications and now live an active life at the age of seventy-one.

Since I achieved remission and regained the use of my hands I’ve entered the cyber world and discovered neuroplasticity is now the basis of some CRPS treatments. One such treatment is guided motor imagery (GMI) that some physical therapists and occupational therapists are using with their CRPS patients.

Anything else you would like to add?

In 2021 my educational and inspirational Instagram account attracted an invitation to appear on a podcast interview. During the interview the host encouraged me to author a book about my miraculous recovery and my affordable and accessible strategies for pain management. While I researched the world of apps to include in the resources section of my book I discovered TrainPain, an app based on neuroplasticity science. This mindfulness app integrates physical sensations with game-based training.

After meeting with the founder of TrainPain I was invited to partner with TrainPain to present free patient education workshops for newly diagnosed CRPS patients.

Here’s how to connect with me:

Email: [email protected]

Instagram: @bonbonlester

Website: BonnieLester.com

On my website you can sign up to receive my newsletter that provides science-based information and free PDF’s with strategies to feel better now. 

Gratitude in Leadership: A Heartfelt Tribute to Our Exceptional Executive Director

As announced earlier this month, our Executive Vice President & Director, James W. Broach, MSW, has decided to retire after 25 years of dedicated service and outstanding leadership to the CRPS/RSD community.

Jim’s legacy will continue through the numerous Warriors he has helped over the years. Take a look at the kind words and generous feedback we received since announcing his retirement.

“If it was not for Jim and rsds.org, I would not be alive.” – Patty S.

“Jim answered the phone 17 yrs ago to begin my CRPS journey of education, advocacy. Over the years, Jim and I presented in a variety of forums including Hofstra medical school, Long Island Pain Management Nursing Association, National Conference of Pain Management Nurses, ran educational booths, spoke in podcasts, radio, etc. Honestly, a true champion to RSDSA and the CRPS community (medical, patients, caregivers). His endless energy has created tremendous differences for all. Thank you doesn’t express the enormity of it all. God bless you my friend.” – Beth S.

“Thank you Jim. I spoke with you personally and you made a huge impact on my life. Your help with my CRPS diagnosis meant so much to me and my family.” – Libby M.

“Jim and RSDSA have been a tremendous advocate for RSD/CRPS warriors for decades. In addition, his organization was one of the first I am aware of who generously acknowledged alternative treatment modalities as a viable consideration to reduce or even eliminate the neuropathy and physical symptoms of the disease. I am personally indebted to Jim for his support. These are indeed big shoes to fill. Wishing Jim much joy (and well deserved relaxation) in his next chapter.” – Michael C.

“Dear Jim! Thank you for your part in my journey with CRPS over the last 2 decades. It was a pleasure meeting you in person in 2013. Happy retirement!” – TV

“Congratulations!! You’ve been a light to so many and for that we are grateful! Enjoy your retirement!!” – Bonnie W.

“Congratulations, Jim! Thank you isn’t enough. Your tireless work in CRPS awareness and education saved my life. That’s not hyperbole. When I was diagnosed, I was at the absolute end of my rope. Then I miraculously found RSDSA online and you changed the course of my life. Here I am, seven years after finding a treatment plan I would never have imagined, still standing, still moving, still helping others find RSDSA. Thank you will have to do, but it hardly covers the gratitude I have for your work.” – Cory

“Jim, I spoke to you on a few occasions and I know for a fact that you helped changed lives for the better. While I hate to see you go, I think that you deserve a well deserved retirement. I hope you get to enjoy it and live life to its fullest!” – Merrie C.

If you are interested in sharing your story about how Jim has helped you navigate RSD/CRPS, please email [email protected].