by Daryn Brown
|mobileWOMEN.org contributor, Daryn Brown|
According to the McGill pain scale, Complex Regional Pain Syndrome (CRPS) is one of the most painful medical disorders, although symptoms and severity vary greatly from person to person. However, it is now believed to be an autonomic/autoimmune disease that affects the neurological system, CRPS usually starts after a minor trauma such as a sprain or toe stub. There are a few hallmark characteristics including pain disproportionate to any trauma or injury that could have occurred, intense burning pain, severe hypersensitivity and skin temperature changes. Some people have other symptoms, such as autonomic dysfunction, color changes, and tingling.
Eighteen years ago, I was diagnosed with CRPS following a minor wrist sprain in my left wrist. Though there is written documentation of CRPS dating back at least to the Civil War, there is still not much known about the condition, few treatments and no cures. Over the years, CRPS has been known by other names such as reflex sympathetic dystrophy (RSD) and causalgia.
It is hard to know how many people live with CRPS since there are no tests to diagnose it definitively. Typically, a doctor will first test for and rule out other potential conditions. If everything else comes back normal, they will next use the Budapest Criteria to consider several different categories of symptoms, such as sensory, vasomotor, and motor. Each category includes a number of symptoms, such as swelling, skin temperature and color, sensitivity and weakness. If a person has a certain number of symptoms under each category and other conditions have been ruled out, the diagnosis of CRPS is generally given.
For about the first six years since I developed the condition, my CRPS stayed in my left hand and wrist. Eventually, it spread up my left arm, and later, through my right arm, hand and wrist. I was fortunate that until 2010 my flare-ups would come and go. When I did not have a flare up I did not have any pain, but flare-ups came out of nowhere. As hard as we tried, my doctors and I could never find a patter or identify triggers. Luckily, I was able to finish college on time, travel, work, and even move from Ohio to NYC for ten years while I followed my dreams of working as a professional stage manager. I was not going to let CRPS slow me down or stop me.
Over the years, I have tried many treatments to control the flare-ups. . In 2000, my pain doctor implanted a spinal cord stimulator. Though it seemed to provide some pain relief, my body rejected the device, twice pushing it out of my body, so my doctor removed it. Luckily, by then, doctors were starting to use some newer medications to treat CRPS, and some of these worked for me for many years. In 2008, my doctor implanted an intrathecal pump to deliver baclofen to me constantly.
On February 27, 2010, while I was crossing the street as a pedestrian on my way home from work, a car hit and knocked me down. Fortunately, I had no brain injury, broken bones or other serious injuries, but the moment I hit the ground, my CRPS flared up in both hands and arms. Both luckily and regrettably, at the time of the accident I was on the phone with my mom. I know it was hard for her, especially since I was in NYC and she was in Ohio, but I try to remind her that had we not been on the phone, no one would have known where I was for hours.
My parents called my both my boyfriend and pain management doctor to let them know what happened. My boyfriend, at the time, got to the ER as quickly as possible, and my doctor called and talked to the ER doctor. There was nothing the medical professionals at the ER could do for my CRPS, and since I had no other injuries, they decided simply to release me with some pain medicine for the weekend and to see my doctor first thing Monday morning. On Monday, I was admitted to the hospital.
Every morning for a week, they would bring me to the pain management floor for various treatments. After a week with no sign of improvement, they were getting ready to discharge me when I suddenly had horrible abdominal pain. They soon discovered the catheter to my baclofen pump had broken so the medicine was not going into my spine, as it should. Once the catheter was replaced, I slowly started to improve. After two weeks in the hospital, I was discharged to go home.
About two months after the accident, I woke up one morning with drop foot  and pain in my right foot. I had never before had problems with my lower extremities, but within a week, the pain and sensitivity spread up my right leg and through my left leg and foot. After several tests, I was diagnosed with CRPS in both legs and feet. From the onset, the pain and sensitivity in my legs was much worse than it had ever been in my hands.
I had gone from running around the city to barely being able to walk down the block, even when using a cane. My doctor in NY tried everything he could think of; I was going to physical therapy (PT) three days a week and doing exercises at home. However, instead of improving, the pain, hypersensitivity and mobility issues with my legs continued to worsen. After a year of decline, I decided it was time to try an intense inpatient rehabilitation program. I went to a well-regarded facility in Columbus, Ohio, where my parents lived, to participate in a very intense three-week program that involved several hours of PT/OT a day. The program did not help the CRPS and I continued to decline. I had only packed enough clothing for the three-week rehabilitation program, but realized that I really needed to stay in Columbus where I had family support. I ended up moving in with my parents.
I had experienced many big changes in a very short amount of time. I had been hit by a car, spent two weeks in the hospital, went through more than a few treatments, procedures and medications, was fired from my job, pursued legal claims against both the driver of the car that hit me and my former employer, ended a ten-year relationship with my boyfriend, and relocated from NYC to Columbus to move in with my parents. Most significantly, I lost my mobility and independence, and my pain was constant and intense. I felt like I had lost myself somewhere.
The next several years I spent more time in hospitals and rehabilitations than I did at my parents’ home. Working with my doctors, I continued to try lots of treatments and medications. So far, none of the medications has relieved the pain, but several of them have caused severe side effects that required hospitalization. The CRPS, which is likely systemic, has also continued to worsen, causing many autonomic issues and more hospitalizations.
In our culture, we often define ourselves by what we do for a living. Since I was not working and was spending so much time in the hospital or with a doctor, I started to feel like my identity had turned into that of a patient, a guinea pig and a chronic pain victim. All things I have fought against my entire life.
Going from being fully mobile most of my life to suddenly unable to walk and using a wheelchair was very difficult. Like most people, I had always taken my mobility for granted. Now, I found it painful and difficult simply to stand and transfer. From living in fast-paced NYC, I now needed to plan everything and build in lots of extra time for getting myself ready, which was frustrating. Transportation has become one of my biggest challenges, not as before, when I was used to just getting up and going anywhere. Now, if my destination is not within wheeling distance, I need to plan and arrange transportation, which sometimes requires doing things on other people’s schedules, rather than on my own.
I have since found an amazing psychologist who has pushed me to really look at myself - the good, the bad and the ugly; to start peeling away the layers, rediscovering who I am at the core, who I have always been and who I will always be. To find those traits I was born with that can be covered up and masked but will never go away. Many of these are the qualities that have helped me through the difficult times. I was fortunate to be born a happy, optimistic person who loves to laugh and cares about other people. I am also a curious, persistent and very determined person, and once I set my mind on a goal, I find a way to reach it.
Last August, following a hospital stay of nearly three months, I was admitted for rehabilitation to Wexner Heritage Village (WHV). I had initially been hospitalized due to severe side effects from Prialt a medication that some of my doctors thought might help control my pain.. The medication did not help the pain at all, and it caused numerous adverse effects, some quite serious. The problems included significant changes in my mental status, confusion, aggression and hallucinations. While in the hospital, my doctors and I discussed and tried several other treatment ideas including high dose intravenous immunoglobulin (IVIG), a course of high dose steroids, and insertion of an epidural catheter for four days, simply to numb me below the waist and provide me some temporary pain relief. After considering and rejecting deep brain stimulation, my doctors eventually implanted another spinal cord stimulator targeted to my legs. While the stimulator has stayed in place so far, it does nothing to help the pain.
During this hospitalization, I was in so much pain I was not even able to transfer to a bedside commode. By the time I was discharged to inpatient rehabilitation at WHV, I was extremely weak from not moving for so long and was on numerous pain medications, some of which were serious narcotics, though none really helped. While I was still in rehabilitation, my dad got an email from Lori Moffett, who works at Yoga on High, a local yoga studio. Lori had read parts of my story on his Facebook page, and she wanted to know whether I would be interested in working with her while I was still in rehabilitation. By chance, Lori was working on a grant to provide Urban Zen (UZ) to patients at WHV. I had never heard of UZ, and I had little hope that it would help me, but I also knew it would not hurt, so I decided to try it.
Donna Karan created Urban Zen (UZ) while she was trying to find ways to help her husband who had lung cancer. It is integrative therapy intended to work in combination with Western medicine by combining yoga, reiki, aromatherapy, mindfulness and nutrition. UZ is an approach to healthcare that focuses on treating the WHOLE person, not just an illness or disease.
The first time I worked with Lori, I knew another piece of my health puzzle had just fallen in place. Each component of UZ serves a purpose and all complement each other in a way to support the whole person. Reiki is a Japanese technique that helps with relaxation and stress. One of the main goals of reiki is to help facilitate and promote your bodies’ own healing ability. Aromatherapy uses various plant oils and aromatic compounds to help alter a person’s mood, promote relaxation, increase energy and help reduce pain. Mindfulness is a practice of focusing one’s attention on the present moment and accepting rather than judging any thoughts or feelings that may be present. Knowing that what we put in our body is important, UZ also focuses on how different foods affect our body.
At this time, my legs and feet were so hypersensitive that a hair falling on them or even a light breeze would cause me to feel a horrible crushing pain that I can only equate with an elephant standing on me. The pain was so bad that it alternated from feeling hot, as if my legs and feet were on fire, to feeling so cold that they burned, as if from severe frostbite. I could not wear pants at all, and I often could not touch my own legs.
Using UZ and reiki, Lori was able to get me to such a relaxed state somewhere between sleep and awake, and as if, I was floating. My eyes were often closed during reiki, and for a while I could not tell whether she was touching me or not, as I clearly felt “energy” radiating from her hand to my legs, but without pain. At first, I was not sure I wanted to know because I thought that if I knew she would be touching me, I would not be able to relax anticipating her touch. After a while, once I was able to get to the same relaxed state with my eyes open, I saw her put her hands on my legs, and I was shocked! How was it possible that she could be touching me, and yet, it was not excruciatingly painful?
I knew from the beginning the UZ was helping, and the more I worked with Lori, the more I was able to do in PT/OT. I was even able to reach a goal I had set for myself; to walk out the front door when I was discharged. I also began to notice some other (non-physical) changes that for a long time were hard to identify or describe.
After my discharge from inpatient rehabilitation, Lori continued to work with me once a week. She would come to my home where she would set me up on my bed. When doing UZ, it is very important to be in a very comfortable position where your body is fully supported. After several months of work and training, Lori attuned me to reiki so that I could practice it on my own. Reiki is a very spiritual practice that focuses on energy, the concept of “life force energy,” and the body’s ability to heal itself. The attunement is a ritual where the reiki master helps the student open up to the reiki source and the energy.
Soon, I started to notice that the more I worked with Lori and the more I practiced on my own, the better I felt. While the pain and hypersensitivity in my legs did not improve, even so I felt more grounded and open. It is hard to put the feeling into words, but I became receptive to many of the things that my psychologist and I had been working on, such as making space in my brain for things other than just the pain. While I had never gotten truly depressed throughout the entire ordeal, I had not felt like myself for a long time. UZ somehow granted me the permission I needed to put myself first and truly focus on myself, without feeling guilty.
Over the years, I had been taught to use biofeedback, visualization, and other relaxation techniques, but I was never able to use them when I really needed to. UZ opened the door and gave me the tools and permission to enable me to relax. For me, this was huge. By using the UZ techniques that Lori had taught me, when my pain would escalate beyond its already high level, I could keep it under control, often stopping the pain from continuing to escalate.
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mobileWOMEN.org contributor, Daryn Brown, has learned to live with and manage Complex Regional Pain Syndrome (CRPS) for about 18 years. During most of these years, she lived and worked successfully in NYC as a Theater Stage Manager. Nearly five years ago, Daryn's CRPS worsened considerably and spread to her legs after a car struck and knocked her down while she walked in a crosswalk. Despite extensive and continuing medical attention, her intense and continuous pain has not lessened, and she uses a wheelchair. Daryn was introduced to Urban Zen and Laughter Yoga about a year ago and has since become a certified laughter yoga leader. Since using these practices Daryn has been able to return to work part time, getting back into theater where her passion lies and is getting ready to move into her own apartment making another step toward being more independent.