Eric: 40 Years Living with CRPS — Choosing Life Over Limb (Part 4)
Content Note: This story discusses amputation and medical trauma. Please take care while reading.
Eric was diagnosed with Complex Regional Pain Syndrome in 1987 at Massachusetts General Hospital. Over the course of nearly four decades, he endured countless procedures, setbacks, and unimaginable pain. This is his story of survival, strength, and ultimately, choosing life.
Chapter 1 (Part 4): Advocacy + Hooshmand + Writing
Advocacy
Over time, I started to meet many others who also suffer from CRPS. In the early 1990s, I started a local RSD support group with a few other patients that I met after my diagnosis.
As support groups go, people come and go. I was the only one running the group after some time. I would hold meetings at a local hospital in my area. Over time, the group got bigger, and we started to get patients to come to our meeting from out of state. I would get doctors, physical therapists, and lawyers to speak to the group. These lectures were helpful to many patients, including me. To know that you are not alone dealing with such a painful disease was the best medicine for me. Running the group or just talking with another patient on the phone has helped me cope with my pain and to know that each one of us is just another piece to the puzzle we call CRPS.
Through running the group, I have been fortunate to meet so many wonderful and brave people. Some of these amazing people have become close and lifetime friends of mine.
Even though I no longer run the local support group I have kept in touch with many of the people that I met through the support group.
After the local support group meetings ended, I started a website www.rsdinfo.com to help educate others suffering from CRPS. From my website, I have received tens of thousands of emails from patients from around the world.
Instead of meeting at a local place to talk about CRPS, I now do it through e-mail or by phone. I enjoy talking to patients, and I love trying to help them somehow either by giving them a referral to a doctor, lawyer, therapist in their local area or just to be the one to tell them that they are not alone. It helps me to help others.
DOCTOR HOOSHANG HOOSHMAND
In 1993, I was so very fortunate to meet the late Doctor Hooshang Hooshmand (or as I call him Doctor Hoosh). I met him through the textbook he wrote about RSD. It was the most interesting and helpful textbook I have ever read on the topic of RSD-CRPS. After reading the first few pages of his book, I picked up the phone and called his office. He was so kind as to take my call. He spent over an hour on the phone with me. I was so impressed that he took the time to speak with me. After talking with him and reading his book, it seemed we shared the same philosophy regarding RSD-CRPS.
He was the first doctor that I had ever talked with who shared the same views I had on treating this disease. After our first phone conversation, I invited Doctor Hooshmand to speak to our local RSD-CRPS support group.
He was so gracious to accept my invitation. He took the time out of his busy schedule to fly to Massachusetts and give a lecture to our support group. He was a great speaker, and he took the time to explain things to the patients.
He also took time after his lecture to personally speak with every patient in the room. There are a few things that I remember about that day. During Doctor Hooshmand’s lecture, he said two things that have stuck with me over the years.
First, he told the group that “the people who know the most about CRPS are not the doctors, it is the patients who have the most knowledge about the condition because they are the ones who live with the pain every day.” The other thing he said was, “do you know what the difference is between God and a doctor? He said that God does not think he is a doctor, but most doctors think they are Gods.” These two statements are so true.
I was so impressed that he said these things to our group. I finally met a doctor who got it! He was someone who knew about this disease and knew how to treat it. He also treated his CRPS patients with the utmost respect.
Over the time of knowing Doctor Hooshmand, he had come to speak to our support group often. In 1995, Doctor Hooshmand asked me to work with him to construct a large-scale RSD-CRPS conference for both patients and physicians. This conference format was one of the first of its kind. We had both patients and physicians attending the conference at the same venue. The conference was such a success, we decided to do two more conferences with the same format for patients and physicians in 1997 and 2000.
After our first conference together, Doctor Hooshmand had asked me to help him write some medical articles on the subject of CRPS that were published in medical journals. I agreed to help and work with him. I also developed a website www.rsdrx.com for Doctor Hooshmand to help educate both CRPS patients and the medical community. This work was one of the best things to happen in my life besides getting married in 2018 to my beautiful and loving wife Mercedes.
Working on dozens of CRPS articles with Doctor Hooshmand has helped me gain so much knowledge about this disease. Doctor Hooshmand was a great teacher and mentor. More than being a great mentor, he became a great friend to me. I am so blessed and grateful that I had the honor to meet and work with one of the greatest Neurologists that has ever treated CRPS.
As I say to all my friends, family, and other CRPS patients that I am the luckiest guy in the world to do what I have done in my lifetime, to work with such a great man who has helped so many people worldwide.
Besides working with Doctor Hooshmand, I also received treatment from him. He treated my CRPS and lower back issues up until his retirement. His nerve blocks worked the best for me. His treatments helped me manage my pain which gave me a better quality of life.
Once again, I am most grateful to the late Doctor Hooshmand for treating my pain and helping other patients for over 40 years. What impressed me most about Doctor Hooshmand was his compassion and tireless efforts to help his patients who were suffering from the chronic pain of CRPS. In my opinion, he was the Archangel of CRPS for helping so many patients. He always tried
to provide his patients with a better quality of life. He was truly an amazing man, physician, mentor, and best friend.
WRITING ABOUT RSD-CRPS
Writing about RSD-CRPS has evolved into a profound passion for me over the years. I owe a great deal of gratitude to Doctor Hooshmand, who introduced me to the art of writing on this remarkable subject. Collaborating with him on medical articles that were subsequently published in various medical journals has significantly enhanced my understanding of the writing process and the intricacies involved in preparing articles for publication.
One of my most vivid memories of working with Doctor Hooshmand is how content he appeared while writing articles for publication. I once made a comment to him saying that he seemed to be in his "Happy Place" while writing, to which he agreed, expressing that writing, particularly about RSD-CRPS, brought him immense joy, as he hoped his work would help educate both the medical community and the numerous patients affected by this painful syndrome.
After Doctor Hooshmand's retirement and his passing in 2019, I continued to work on the projects we had begun together over the years. I take pride in having completed the majority of our collaborative efforts, though there are still a few remaining projects I am eager to finish.
At the onset of the Covid-19 pandemic, my good friend Doctor Alaa Abd-Elsayed, an anesthesiologist at the University of Wisconsin–Madison, reached out to me with an intriguing proposal: to co-author a book on CRPS. I eagerly accepted, recognizing a gap in the existing literature, which predominantly reflected the medical community's viewpoint rather than the lived experiences of patients. Together, we decided to focus on the patient perspective, inviting individuals to share their personal stories of coping with the chronic pain associated with CRPS. The response from the CRPS community was overwhelmingly positive, leading us to publish a total of eight books under the series title "COMPLEX REGIONAL PAIN SYNDROME (CRPS): PATIENTS’ PERSPECTIVE OF LIVING IN CHRONIC PAIN."
In 2022, I embarked on the journey of writing a book series that delves into the different aspects of CRPS. My motivation stemmed from the realization that many complications associated with CRPS remain largely overlooked or misunderstood within the medical community. These complications can arise as a direct consequence of living with CRPS, yet they often go unaddressed in existing literature. I aimed to shed light on these lesser-known aspects, providing a comprehensive understanding of the condition that encompasses not only the pain but also the broader implications it has on individuals' lives. Through this series, I hope to raise awareness and foster a deeper appreciation for the complexities of CRPS, ultimately contributing to better support and treatment options for those affected by CRPS.
Since 2022, I have authored and published eight books, and I am currently in the process of writing my ninth book. My book series is titled "COMPLEX REGIONAL PAIN SYNDROME (CRPS):
LEARNING ABOUT THE DIFFERENT ASPECTS OF A PAINFUL SYNDROME." Both book series can be found online through Amazon Books.
Writing about CRPS has proven to be a valuable therapeutic outlet for me. It has not only aided in my coping mechanisms but also deepened my understanding of this complex syndrome that affects countless individuals around the globe.
When patients reach out to me to share their experiences with CRPS, they often hesitate to write their stories because they lack prior writing experience. I reassure them that they are capable of doing it. I emphasize that writing about their personal journey can be a healing and therapeutic process, allowing them to express their feelings and reflect on their experiences to help others suffering from CRPS.
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Medications are a big part of dealing with CRPS. There are so many types of medications out there to help you deal with the pain of CRPS. In my case, some medications do not agree with me. On November 17, 1997, I was having a procedure done on my leg so I could be cast for a new brace for my left leg, to help with the deformity that I had developed due to the CRPS. I was at Doctor Hooshmand’s office having a nerve block done to help with the pain of getting cast for the brace. I was on three different medications at that time. I was on Klonopin, Baclofen, and Buprenex (Buprenorphine). Unfortunately, this event was the day that I had an allergic reaction to these medications.
One thing I do remember on that day was being in the procedure room and I was getting hot and tired. I was fortunate that my friend Debra was in the room with me, while I was having my leg cast for the new brace. She noticed that I was turning blue and I had stopped breathing. It was the worst thing you could fear. I had gone into respiratory failure.
I had no clue what was going on at that time. Debra was able to get Doctor Hooshmand and others into the room to help me. They called 911 to get me to the local hospital.
From what I was told, they had to jump-start my heart, and they rushed me to the emergency room. I remember waking up from one of the best sleeps that I have ever had in my life. The only thing that I can remember is that it was dark and peaceful. I did not see any bright lights or angels. I do not remember knowing what was going on or where I was. When I was looking around the room to see where I was, I then saw Doctor Hooshmand standing on the left-hand side of me. Once I saw him, I knew that I was safe.
During the event of having respiratory failure I had aspirated, and I developed Aspiration Pneumonia. Great another thing to add to my list of problems that day. After coming through all the day’s events, I was admitted to the hospital for a week. We do not know which of the three medications may have caused the allergic reaction which caused the respiratory failure.
To this day, I no longer take any of these medications. I would rather be safe than sorry. I would never want to go through that ordeal again in my life.
On that note. I am left with taking very few medications. The few medications that I can tolerate are Ultracet and Dilaudid for pain and anti-inflammatories such as Mobic, and Diclofenac. I am very lucky to have such a high pain threshold. Oh, lucky me!
Once, again from the bottom of my heart, I am very grateful to everyone who helped save my life that day. I am one very lucky guy!