Ever since the words Reflex Sympathetic Dystrophy came into my world, I have had to wrestle with its meaning.
At diagnosis, I was told to not research RSD since the doctors didn’t want me to become afraid, and they figured it would disappear. So, I took their advice, until it was impossible to ignore that something was seriously wrong. Very wrong. Reading wasn’t scaring me, the pain was scaring me, and then, the calls to cancel appointments scared me more.
Well, today, three years later, RSD research is a part of my life.
In October, it will be exactly 3 years since that evening in the ER, a urinary tract infection was the diagnosis, but they wanted to draw blood before I left. As the needle went in, I jumped and said ‘ouch!’ and the tears fell, the nurse said ‘I’ve hit a nerve. Sorry. I won’t take much longer,’ and he continued to draw blood until he had filed the whole vial.
That moment changed my life.
I’ve written recently that I have found more hope because I will finally be able to start work with a team of specialists. My appointment is this week. It couldn’t come fast enough.
This past weekend I missed going to an event that is the highlight of my year, a chance to visit with relatives and dear friends, and reconnect.
I had a ride down, and even though I had wished I had the money to rent a car in case I had to rest or leave early, I pictured myself there, so it had to be ok.
Only, the day before, I noticed symptoms that warned me that rain was coming. Not a big storm, because the spike in pain, and need to sleep, were only mild.
I sat looking out my window, trying to beat back the frustration of being cooped up all the time. I said I wasn’t going to let the pain get me down, but, I simply didn’t know how I could physically do the 4 hours of travel round and back when a block in the city wore me out.
Where my studio provides the space to push back the pain from walking, the prospect of going out, without a car or exact ride home, well, the idea of that scaring me – well, it scared me because if there is one thing I have done my whole life, its travel.
Who is this person? Where is the woman who would go anywhere? I felt angry with myself, and angry for all the things I haven’t been able to do since RSD.
I sat at my window, looking out. I went within to my place of abundance, rather than lack, as I know that negative feelings are unhealthy and over time, can create illness. For people with RSD, stress can spike symptoms.
From the window, I looked over the sky dominating the buildings, and I could see a new light. There in the sky, I saw a fresh spring.
In my recent research, and quite by accident, I came across an article that floored me.
The article described my symptoms over the last 3 years to a T. The paper was stained with tears as I read not only about my symptoms, but also, the response to my symptoms.
The most rare, extreme, and unpredictable of the CRPS/RSD is Venipuncture CPRS. It spreads faster and is less predictable in its development.
When I spoke with the researcher Eric Phillips, from the International Reflex Sympathetic Dystrophy Foundation, a few days later, I embarrassed my self by crying over the phone about how awful the last 3 years had been trying to get access to a specialist. Why had the doctors insisted I wanted to have RSD? I had never even known about it before the neurologist spoke about it. In fact, he was the first one who said 3 years ago that RSD can develop from something as little as a needle prick.
Eric has spent the last 25 years living with RSD, and giving back to the community through the website and years of research in collaboration with CPRS experts. He understood.
When I read the articles he sent, I felt like someone turned the light on in the room, and I could see things much clearer. I felt like a weight had been lifted from me.
I learned that my symptoms and the development of the CPRS in me so quickly is characteristic of venipuncture CPRS. I found my own experience echoed in the article and the experience of respondents of the study published in 2001 in the American Pain Management Journal. Eric has continued to study Venipuncture RSD. He has now spoken to and documented more than 500 people around the world.
We are talking very rare.
I met last week too with my new GP, and shared the article with her. I will take it with me to the appointment with the pain specialists.
I will be sending it to key officials who have been a part of helping me sort this all out, so that people can learn more about this very rare form of a rare condition.
I also learned something interesting from the second article. Prescribing ice on nerve injuries can produce a very negative physical reaction, freezing where instead flow is important.
As I sat at home instead of roamed free, I felt sorry for myself. I listened to Hays House Radio, a favorite companion for me. Especially the programs that talk about going beyond illness. Some times, I view my condition as just another box and I have to get out of it, show people and myself I am more than this box. My mind can overcome the physical, my prayers and the prayers of so many others, will help me overcome this CPRS.
I came across a Dr. Christine Northrup show with Elizabeth Cohn, author of the book, The Empowered Patient. Cohn is CNN’s Senior Medical Correspondent.
Like me, her dad is a doctor. Like me, she had an experience that changed her view of how she can best approach medical care. Like me, and despite deep respect for the medical community, she believes there is something better that can be achieved by becoming more empowered over our own health.
I learned a great deal from Eric about other people like me around the world. He told me of a woman who is at the beginning, as I had been 3 years ago, and is so depressed because the doctors keep treating her like its in her head, and she is in Tahiti, with fewer resources than most Americans, if not me.
I remember the shock of doctors responding as they did. Its fricking traumatic.
I offered to be a support if she wanted to talk with someone.
Angry? Faking? Doubt as Standard Response?
I remember how many times people told me not to be angry. On top of being hurt physically, and then, emotionally by being denied even that there is a physical cause, we are supposed to remain calm?
And, when a doctor does not believe you, as I found in my case, there is a huge chain reaction of disbelief for people who can least afford to lose loved ones and friends, or to have public agencies treating one in the same way.
I kept asking, why? why would anyone make this stuff up? That’s what I could not understand.
Today, I came across another article that led me to think maybe part of the answer lies in what the article described as ‘rising claims of RSD, which can be easily faked.’ Written and published for the insurance industry, surely the article seeks to help insurer prevent losses, warning employers to be on the look out.
I understand the industry has its reasons, but spreading the notion that RSD can be faked seems so far off from the experience I had. I doubt one can fake those levels of pain. As the article itself points out, often people with CPRS are willing to consider amputation to make the pain to stop.
Unfortunately, that attitude appears to play into something David Hunter wrote about in the Knox News. Mr. Hunter published an article about a U.S. Navy Veteran with RSD whose garden had become one of his responses to the high pain of RSD.
Sadly, anonymous commenters went so far as say such things as “If is healthy enough to farm a garden. Why is he collecting disability checks?” and another, even suggested that this veteran’s RSD was a way to access government-supported drug use.
I remember being accused of wanting medication as the reason for the RSD. I offered to call a Public Notary to verify the number of pills prescribed to me were the same amount still sitting in those bottles. Vicadin simply put me to sleep.
So, I guess, the thought of insurers taking an ‘automatically suspicious’ approach to RSD by assuming ‘faking’ until proven otherwise presents several challenges, and not just for the individual, but also for the insurer if they are wrong and the person was not faking but decisions were made based on a wrong interpretation. I recently heard of another RSD patient who is constantly having to battle the employer and workers comp over the RSD.
Perhaps doubt has become a standard response?
There are no exact tests for RSD. In fact, generally, all other possible causes must be considered first, unless it is obvious. In my case, the pain level, the swelling, the hot arm, the sweating, the numbness, and disability were fairly obvious. My diagnosis was made within 3 weeks, including the delays for the various appointments cancelled in those first weeks.
In January 2011, The Journal of Pain published an article by researcher Terence J. Coderre, ‘Complex Regional Pain Syndrome: What’s in a Name?’
In summary, the article explores the history of medical diagnosis and treatment of CRPS, and takes a look at a crucial moment in history when the medical community determined one of two theories about CPRS was more valid and treatment over the last 60 years has grown on that one branch of theory, while the other theory has had little growth as it was virtually discounted. The article poses the question of whether there might be something important to be gained by revisiting the other line of inquiry now.
What is certain is that there is much to be learned still.
I return to the feeling I had at the start of the new year, patients and doctors working together can bring greater knowledge, while shunning and closing out someone from medical care is…well…I don’t have the words right now so I will leave it there.
I am in touch with Eric Phillips now, and I have been referred to several doctors who are specialists Eric has come across in his many years of research.
First, I will be meeting with the specialists this week and moving forward.