Category: Guest Blogger for RSDSA

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

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…

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.

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]. 

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 29^th, 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.