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]

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. 

I Have Hope That I Can Be a Light in the Darkness

Written by Patty S. for the RSDSA blog.

This past April, I celebrated my 30th year of having CRPS and only having the diagnosis 28 years. Where does the time go when one is having so much fun?

In 1993, I was the middle car in a three-car accident. I hurt my neck and back. It took a long time to get better. Yet something strange happened to my right arm – it would swell up, turn red, and burn, then change to blue, feel cold, and still burn. I saw 20 doctors over two years, and nobody could figure it out. They finally said I might have Reflex Sympathetic Dystrophy (RSD), now called Complex Regional Pain Syndrome (CRPS), a rare illness with no cure. They told me to get used to the pain, because I would have to live with it forever.

I went to a psychologist for psychological testing. He knew about CRPS and suggested I see Dr. Kirkpatrick in Tampa. By the time I saw Dr. Kirkpatrick, my right arm was so sensitive I couldn’t touch it, and each finger was almost three inches wide. Dr. Kirkpatrick had a plan to help me get better. He gave me 50 articles to read about CRPS.

The doctor’s treatment plan started with six blocks on my ganglionic nerves twice a week. It worked, and I got a confirmed diagnosis of CRPS with some hope. I had many more rounds of blocks, and I even had surgery to remove part of my sympathetic nerves. I thought I was cured and went back to work part-time. But every six months, I had to get more blocks because the pain came back.

In the following five years, I had two more car accidents, and the CRPS spread to my left foot, hip, face, head, and whole left arm. I had almost 100 blocks in a year, plus many other treatments like hypnosis, TENS unit therapy, water therapy, physical thearpy, and more. I even tried something called the “burnout method” that hurt so bad it made me pass out, but it didn’t work.

In 2008, my right arm and left leg got much colder than the other side. More blocks and ketamine were added, and I learned how to do biofeedback. But my regular doctor couldn’t help anymore, and in 2010, new doctors said I needed on disability. That’s when I lost hope, lost friends, and couldn’t go to the beach. I had ketamine infusions, more blocks, and “The Suicide Disease” took over. I lost hope yet had to be the caregiver of the family.

By September 2022, I had reached my end. I felt isolated. Stiffness and swelling made me fall and suicide was all I thought about. I lost all hope. I hadn’t smiled or laughed for years.

Then I was asked to try out a program called Override, in March 2023. One of the pain coaches, Brenda, called me and told me about Override’s virtual Comprehensive Pain Program that might help. It involved seeing a team of pain specialists including a pain physician, psychologist, physical therapist and health coach that all actually worked together on the same team. They would also teach me about pain science and how to take control of my pain. And I could participate from home since the treatment was all virtual. 

I was very skeptical and thought it wouldn’t work, but I decided to give it a try and postpone suicide for six months.

I listened, practiced, and learned a lot about managing pain with Override’s team. Three months into it, I still had bad pain days, but within 40 minutes without any pain medication, I could reduce my pain from a 10 to a 5 using a technique Override taught me called deep breathing and visualization. That was faster than a pill would work! I was even able to sleep more than 25 hours a week.

Four months into Override’s program, I could stop any suicidal thoughts and started having a little hope. After 30 years of pain, I learned to accept it. I had a little control, felt calmer, and could smile. In five months, I could smile more, manage pain better, and my self-esteem went up. I could laugh without it hurting, and I could reduce pain in 27 minutes. I had hope and could achieve my goals.

Since completing my program at Override after nine months of treatment, I have peace and joy five out of seven days a week. It’s not perfect, but it’s pretty unbelievable compared to where I was.

I recently ate out at a restaurant, went to church and sat through services, and attended a prayer group. I haven’t done these things in 18 months. Now that I’m getting out, I can talk to someone other than my dog, and he’s grateful!

Just months ago, I didn’t think I had any purpose in life except to suffer. Now, I’m planning to volunteer with an organization starting March 2024. I have hope that I can be a light in the darkness, and I know I have a future thanks to Override. I am getting better at the tools, yet would still like a cure.

Learn more about Override via their website and our June 2023 livestream.

Please consider supporting RSDSA with a monthly gift.

FDA Approves Full Body MRI for Abbott Proclaim DRG Neurostimulation Device for CRPS Lower Limb Treatment

Abbott says four out of five people who are implanted with its Proclaim DRG device experience significant pain relief and improved quality of life.

The new FDA approval now allows patients to receive MRI scans while implanted with the device, eliminating the need to sacrifice MRI imaging to access this type of pain relief.

By James Doulgeris, Chairman, RSDSA Advisory Committee

The Proclaim DRG provides targeted relief for people with complex regional pain syndrome (CRPS) Types I and II of the lower limbs. It stimulates the dorsal root ganglion (DRG) clusters of nerve cells found along the spine providing “significant pain relief” in four out of five patients. 

This implant, however, has come at a cost because patients with the implant were not able to get MRI imaging anywhere in the body before this approval except in specialized facilities. Now they can at any imaging center.

If you have this device implanted, or are considering having one implanted, you will find more information in Abbott’s press release or by consulting with your surgeon.

Updates are provided as a service of your RSDSA Advocacy Committee

Contact us at [email protected] 

Interested in volunteering as a member of the Advocacy Committee? Its as simple as emailing us at [email protected] to learn more. Or you can support us with a monthly gift. Just click here!

RSDSA receives no governmental support. We are totally reliant on donations from the CRPS community and from our fundraising events. Thank you for your kind consideration.  

Buying Prescription Drugs from Canada is Now Legal in Florida

Written by James Doulgeris, Chairman, RSDSA Advocacy Committee

It is now legal to purchase prescription medications from Canada, which are as much as forty percent less expensive than those available in the U.S., in Florida directly from your local drug store and online. They are FDA approved and safe to use, however, it will take time for the system to absorb this monumental change in distribution and regulatory approval systems.

The approval of Canadian drugs in Florida is expected to reduce prescription drug costs for residents while maintaining safety standards through FDA oversight. This could potentially serve as a model for other states seeking to address the high cost of prescription medications.

Here is how this new approval will affect Florida residents and how the system will change over time:

Cost Impact

Lower Prescription Drug Costs: The approval allows Florida to import inexpensive prescription drugs from Canada, where medication prices are typically lower than in the United States. This is expected to result in cost savings for consumers in Florida, but not for everyone and not directly.

  • Commercial Insurance – Any savings to be passed on to consumers as PBM’s (Pharmacy Benefits Managers) assess price advantages of Canadian versus U.S. sourced drugs, and these are done on a national basis. In any event, cost savings will be indirect in the form of lower co-pays or insurance premiums. This law pertains only to Florida and it will take time to sort things out. 
  • Cash Customers – It is uncertain how consumers will be able to price shop between country of origin. It will be largely up to consumers to price shop between retailers, who may or may not advertise cost savings, but likely will to bring traffic to their stores. It is unlikely price wars will erupt, though.
  • Medicare and Medicaid – These are national programs that can now negotiate with drug manufacturers, and these will be largely unaffected for now. However, there may be isolated cases where the cash price may be lower than co-pays in the “donut hole” in Medicare Part D, which pays for prescription medications. Careful shoppers should keep an eye out for organizations like AARP and Consumer Reports, which will likely track and report these savings opportunities.

Increased Competition: The availability of Canadian drugs can introduce more competition into the pharmaceutical market, potentially leading to reduced prices for a wider range of medications in Florida and potentially other states, but only for cash customers meaning those without healthcare pharmacy insurance benefits.

Safety Impact

  • FDA Approval: The U.S. Food and Drug Administration (FDA) approval ensures that the imported Canadian drugs meet certain safety and quality standards. Therefore, consumers can have confidence that these medications have undergone regulatory scrutiny for safety.
  • Prescription Authentication: The FDA’s involvement includes verifying the authenticity and legitimacy of the imported drugs to prevent counterfeit or unsafe medications from entering the market. This, however, will get complicated with pop-up retailers and online sellers.

Online Purchases

While the approval of Canadian drug imports in Florida allows for the importation of medications from Canada, Floridians cannot purchase Canadian drugs online without restrictions. The implementation of the program and the specifics of how these drugs can be obtained, while regulations and processes are in place, will be a moving target with unscrupulous sellers.

To purchase Canadian drugs in Florida, Florida residents should follow these steps:

  • Consult a Healthcare Provider: Before seeking to purchase medications from Canada, you must consult a healthcare provider. They can assess your medical needs, discuss treatment options, and provide prescriptions if necessary. A prescription is required to purchase prescription medications.
  • Verify Legitimate Online Pharmacies: Research and choose a legitimate online pharmacy based in Canada. Verify the pharmacy’s credentials, including its licensing and reputation by seeking a third-party validation using Google or a similar search engine.
  • Prescription Requirement: ALL legitimate online pharmacies require a valid prescription from a licensed healthcare provider to dispense medications. 
  • Beware of Scams: Exercise caution when dealing with online pharmacies. There are fraudulent websites selling counterfeit or unsafe medications. Stick to reputable sources and avoid suspicious offers. If it seems to be too good to be true, it is.

While the FDA approval allows for the importation of Canadian drugs into Florida, the process of purchasing them online should be must cautiously, following the proper legal and medical procedures. Always prioritize safety and verify the legitimacy of online pharmacies to ensure the quality and safety of the medications you purchase.

Contact us at [email protected] 

Please consider supporting RSDSA with a monthly gift 

RSDSA receives no governmental support (it is time to change that!). We are totally reliant on donations from the CRPS community and from our fundraising events. Thank you for your kind consideration.  https://rsds.org/donate/

For more information or with questions, contact Jim directly at [email protected]

My Transformation from a Life of Pain to Purpose

Written by James Doulgeris, Chairman, RSDSA Advocacy Committee

I have CRPS. The bad kind. Type 1. Full body. With Parkinson’s, severe eosinophilic asthma, mast cell activation syndrome and other nasty autoimmune diseases.

Having spent my entire career at the highest levels of healthcare, I was frustrated. I did well for myself selecting an excellent team of physicians and managing my care myself but was hopelessly overwhelmed because I could not do the same for others. And that is not for lack of trying.

I soldiered on until I realized I was fighting the wrong battle. Fighting an incurable disease that gets worse over time against an apathetic and often ruthless healthcare system and uncaring government is a dead end – literally.

An epiphany helped me to realize that fighting for a purpose changed my life. When Jim Broatch, RSDSA’s Executive Director, recruited me to chair the Advocacy Committee, it all came into focus. Instead of dreading each new day, now I cannot wait to get to work. The pain is still there. So is the fatigue. So are the limitations but they are motivations to work harder. I became a warrior with five major initiatives, and I invite you to transform your life by joining us in this important work:

  1. 1. Bringing drugs like ketamine that bankrupt so many of us or are simply out of reach today for so many on label with standard protocols so insurance will cover the cost and our pain will be better controlled. 

  1. 2. Organizing physical and virtual support groups with standards and resources available to everyone.

  1. 3. Partnering with a company at the cost of less than $100,000 to screen over 10 million people for CRPS using AI to start early treatment when it is most effective is within our grasp. It just needs funding. Let’s go and get it so we can turn ten million into 300 million

  1. 4. Launching an awareness and educational program to battle bias, ignorance, and mistreatment that so many of us face daily that resulted in a $261 million award to the Kowalski family from Johns Hopkins All Childrens Hospital in the Take Care of Maya case is just a large grant away. We need advocates to urge our community to lobby congress to fund it.

  1. 5. Getting the resources to find a cure using precision medicine. Using National Institute of Health numbers, CRPS costs over $62.7 billion annually while a potential cure is only $150 million away. The initial US House of Representatives reaction was enthusiastic. We need to bring this home as a team.

No one is going to do these things for us, but we can do them for ourselves. We overcome grinding pain and challenges every day. We can change that! Join us by transforming that pain warrior in you to fighting to lessen the pain, spare ourselves and others from bias and ignorance in the medical community through awareness and education and doing our best to find a cure. Make each day one to look forward to. Not every day will be a good day but accomplishing just one thing allows you to live a life of purpose and fulfillment.

Take your first step by contacting us at [email protected]

Our best wishes for a happier and purposeful New Year.

Jim and the Advocacy Team

Please consider supporting RSDSA with a monthly gift 

RSDSA receives no governmental support (it is time to change that!). We are totally reliant on donations from the CRPS community and from our fundraising events. Thank you for your kind consideration.

For more information or with questions, contact Jim directly at [email protected].

No One Deserves to Live a Life in Pain

Written by Alejandra M. Cervantes for the RSDSA blog.

How and when did you develop CRPS/RSD?

I was diagnosed with CRPS three years ago, in October 2020. My CRPS developed through several injuries such as different ankle sprains and a fracture in the fibula. I was treated by an Orthopedic [doctor] as it all seemed it was an orthopedic problem. I wore casts, boots and received more than 150 physical therapies. None of the above helped me solve my problem, on the contrary, they triggered the nerve, and I began to develop sensitivity in my left ankle. As time went by the pain began to worsen, and started to expand through the left side of my body. I visited numerous Orthopedic Doctors, and they did not understand what the problem was because I tried every orthopedic treatment possible and nothing solved the problem. Later I learned that CRPS is not an orthopedic problem, it is a neurological problem, therefore nothing was minimizing the pain. 

What has daily life been like since your diagnosis?

My mother decided to visit a doctor in the United States instead because my pain got worse with time. I was diagnosed at the Baptist Hospital in Miami, Florida by Dr. Christopher Hodgkins an Orthopedic Surgeon who specializes in foot and ankle. After the first visit he ordered another MRI, (I had done about five of them at home) and when the results came back, he immediately diagnosed me with CRPS and told us that it was a neurological condition and not orthopedic.

First he referred me to aqua therapy. I did 12 sessions, but they did not help, so then he referred me to Dr. Howard Popp who changed my life forever. Dr. Popp is a Pain Management specialist who focuses on patients with CRPS.  

After I was diagnosed with CRPS, my life changed forever. I felt peace because after suffering from this terrible pain and frustration for such a long time and not knowing what was happening to me, I finally received a diagnosis and was certain that my pain was real. This diagnosis challenged me physically and mentally. I stopped playing soccer which was something I loved and my daily life changed since the medication I had to intake to minimize the pain was a high dosage. Dr. Vivian and Dr. Howard Popp understood my pain and frustration and during the first visit they told me that they would do everything that was in their hands to help me live a normal life free from pain.  

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

This condition affects your mental health tremendously; the pain is terrible. There are some days where you wish the worst because the pain is too much to handle. This condition is also called “the suicide disease” because of the high rate of people committing suicide due to the pain. 

What advice would you give to newly diagnosed Warriors?

Some advice I would give to newly diagnosed warriors is to stay strong. You are not alone. I understand how painful it can be and you feel that your life is over but we are all in this together. The fact that you can get out of your bed is already a WIN. Seek not only for medical help but mental health because you will need it as well. Not everyone is going to understand your pain and that is okay. There is light at the end of the tunnel. Life and pain will eventually get better. You just need to be with the right doctors, follow their instructions and keep praying for this battle to end. 

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

As someone who was diagnosed with CRPS three years ago, I encourage you to find the doctors that will make your pain disappear, but also find other activities that will help you mitigate the pain; swimming, for example. Soul cycling has helped me a lot. Your mind, body and soul are connected, therefore in order for your physical health to be good your soul and mind should be in tranquility. Don’t let this condition take your life away. You are here for a reason and you deserve all the good things in life with or without CRPS or any other condition. 

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

When Dr. Popp first saw me, he suggested to do nerve blockages. Since nothing was working my mom and I decided to give them a try. The first nerve blockage took the pain away for two months. Then I had a second one and it only took the pain away for two weeks. The problem with CRPS is that if you don’t treat it right away the pain can continue to expand or you can even start to experience it on the other side of your body. Since the nerve blockages didn’t work for me anymore, my doctors suggested to start medicine. The medicine intake was a high dosage, but since I couldn’t tolerate the pain, we were hoping the dosage would work, and it did work for about three months. Unfortunately, after that my pain began to get worse and worse. Some days it hurt to walk and I began to have muscle atrophy. I started with acupuncture, and it relieved the pain for a little while, but it came back within a day. 

2022 was the worst year for my condition. I could not tolerate the pain, and it was affecting my mental health. This wasn’t life for me anymore and therefore I took a decision that changed my life forever. 

The only option left for my pain to be reduced was the implant of a neurostimulator. This is a device, such as a pacemaker that goes in your spinal cord and it delivers mild electrical signals to the epidural space near your spine through one or more thin wires, called leads. Not all CRPS patients are eligible for this surgery, therefore a trial must be done before, and if your pain is reduced by 80%, then you are eligible. After my trial, I could barely feel any pain. Therefore, I decided to get the neurostimulator implanted.

I had my surgery on March 29th, 2023 and I couldn’t be more happy and grateful with my decision. Although this surgery changed many aspects of my life I get to live a “normal life.” I get to go bed without pain, I get to walk without any stiffness or pain and above all I get to live a life without pain because no matter what type of pain one suffers, no one deserves to live a life in pain. 

Anything else you would like to add? 

To everyone fighting against a medical condition, YOU ARE NOT ALONE. Take your condition in, fight with all your soul against it and win it. You were given that condition in your life for a reason and although the countless nights and days of pain may seem infernal, you were born for a reason, and you deserve to stay here. 

The scars we carry represent who we are, where we’ve been and where we are going. We are entitled to be Warriors since our first cry. Never ever give up. That should not be an option.

Connect with Alejandra via Instagram at @alejandracervantesh.

Please consult your physician for personalized medical advice as individual outcomes may vary. RSDSA does endorse one specific type of treatment. Please visit https://rsds.org/research/treatments to learn more.

Centers For Disease Control And Prevention CDC Guidelines For Long Term Opiate Use

Prepared for RSDSA by James Doulgeris – for more information or with questions, contact him directly at [email protected]

The restrictive guidelines for opiate prescribing of the past have been relaxed substantially, leaving decision making to physicians and their patients. Here are the details:

The new guidelines for prescribing opioids, as outlined by the Centers for Disease Control and Prevention (CDC), have evolved to address the opioid crisis while ensuring appropriate pain management. These guidelines were updated in 2022 and focus on several key areas:

  • Determining the Need for Opioids: Healthcare providers should carefully evaluate the necessity of opioids for pain management. Non-opioid alternatives should be considered first, especially for conditions like chronic pain [2].
  • Patient Assessment: Before prescribing opioids, healthcare professionals should assess the patient’s medical history, risk factors for addiction, and pain intensity. They should discuss the risks and benefits with the patient and establish treatment goals [1].
  • Prescribing Opioids Responsibly: When opioids are deemed necessary, providers should start with the lowest effective dose for the shortest duration, particularly for acute pain. For chronic pain, they should use a gradual titration approach and regularly reassess the patient’s progress.
  • Monitoring and Follow-Up: Ongoing monitoring is essential, with regular follow-ups to evaluate the patient’s response to opioids, their adherence, and any signs of misuse or addiction. Adjustments to the treatment plan should be made as needed [1].
  • Education and Informed Consent: Healthcare providers should educate patients about the potential risks and benefits of opioid therapy and obtain informed consent. They should discuss the safe use, storage, and disposal of opioids [1].
  • Flexibility: The guidelines emphasize flexibility, recognizing that each patient’s situation is unique. The approach to opioid prescribing should be tailored to individual needs and circumstances [4].

It’s important to note that these guidelines aim to strike a balance between providing pain relief for those who need it while mitigating the risks of opioid misuse and addiction, contributing to efforts to combat the opioid epidemic.

Sources:

Overall, while CDC guidelines are more liberal, many state guidelines have failed to be updated to reflect more modern medical viewpoints. Some states such as Colorado are so restrictive that they have only begun to update their ban on opiates when confronted with hard evidence of a direct link to the ban and suicide rates.

Please consider supporting RSDSA with a monthly gift 

RSDSA receives no governmental support. We are totally reliant on donations from the CRPS community and from our fundraising events. Thank you for your kind consideration.