venipuncture reflex sympathetic dystrophy

Courage – an Act of Vulnerability – Brené Brown – ‘Tell who you are with your whole heart’

Posted on Updated on

I wanted to share with you Brené Brown’s TEDX Talk: The power of vulnerability.

It feels like a good thing to share right now. The month of November – VRSD awareness month – came to a close, I found myself surprised to be facing such a different experience than I had hoped for this month.

It is very hard to have the will, and no way, to make the changes I’d like to make in my life. I barely made rent last month, thanks to the help of others. Its been months that I had been running on empty fumes. No food stamps. I have to ensure my son can eat. I get behind.

Its been six months since I’ve had the money to purchase a battery charger for my photo camera. I can’t photograph the new art project I started last month.

How to deal with limitations – physical and financial

I had hoped to start selling the new pieces in time for Christmas and the holidays. I am also without the hard drive space to upload photos even if I had the battery.

Its so very difficult to be stuck with no options. If I can’t work, I can’t make money. If I don’t have money, I can’t buy supplies to make the things I can sell.


It is not easy to face the physical limitations.The physical limitations lead to financial limitations. I am grateful to the many people who have helped me over the last six years.

It is very hard to be so vulnerable.

Its one reason that Brené Brown’s talk stood out for me in the mass onslaught of content when entering the information highway.

‘The original definition of ‘courage’ when it first came into the English language – being from the Latin word ‘cour’ meaning heart – the original definition was to tell who you are with your whole heart.’ Brené Brown: The power of vulnerability.

Surely, anyone who follows this blog – Letters of Courage – understands why I felt most drawn to this part of Brown’s talk.

In the six years that I have written here on this blog, I have tried from the start to face my vulnerability.

My good friend who had been helping me and knew and saw what was happening to me at UCSF, the injury, and afterwards, being denied care in those first months when the disability could have been prevented. I was encouraged me to write about my experience.

Letters of Courage was born.

I was diagnosed with VRSD from the very start so – unlike many people with RSD who must visit so many doctors to find one that might possibly know of RSD – I was told I was facing a serious matter after I was diagnosed. UCSF – at that time – was considered a specialty center for RSD.

Its no longer considered that due to the number of people who have faced difficulties with treatment there – it turns out, UCSF doesn’t really believe in RSD, but pressure from the support groups has supposedly led UCSF to try some new approaches.

Of course, they’ve never reached out to me – not to apologize, not to offer treatment, not to restore what they took by delaying treatment for RSD which could have prevented the very aggressive VRSD, and different from regular RSD for its very quick and debilitating impact and progression.

When I think back to laying there in bed, in so much pain, nerve spasms racking my body and spine, that UCSF let me lay there knowing full well what had happened to me and what treatment I would need, I find myself crying uncontrollably. Only later would I learn UCSF knew of the spine damage and knew VRSD was extremely aggressive.

When my friend suggested I write about what was happening to me, I felt heartbroken to contemplate writing about a medical condition – not just the condition, but that I got it, and got it while having blood drawn – instead of the ten-part PBS series I was interviewing and had trained my whole life to have the privilege to do on a professional, large production.

To do this writing of Letters of Courage, to document my personal details and share them with state and federal representatives, and to share socially that not only had I been injured, but I had been had by a medical and legal system, and, had to admit the vulnerable financial position I had been as the October 03, 2008 financial crisis hit the world on the same night I was injured in the ER at UCSF.

‘Quite simply, these people had the courage to be imperfect,’

from Brené Brown: The power of vulnerability

Connection with Others – ‘Whole-hearted’ people

In studying vulnerability, Brown identified people who faced their imperfect situation and authentic selves with courage as being ‘whole-hearted.’ Interestingly to Brown, the very well from which human connection sprung was precisely being in one’s most authentic self.

One of the most important changes that came out after my advocacy efforts were the online support groups for RSD.

Started in 2010, and really taking off through 2011/12/13 – online support groups gave people with RSD a chance to be vulnerable with each other about what we were experiencing and going through.

Newly diagnosed and long-term survivors with RSD were connecting in an online forum, and sharing experiences, information and research developments.

We were also starting to notice similarities in the way RSD patients were treated, how many were being denied care, and, especially, similarities in symptoms.

Vulnerability is necessary

What Brown’s research also showed was that vulnerability – and learning how to embrace vulnerability was key to living a healthy and positive life – and to avoid joining what Brown describes as the most heavily indebted, heavily medicated and overstuffed cohort of American adults in history. To avoid numbing and difficult challenges, people have to face their vulnerability and express their authentic beings.

‘These people fully embraced their vulnerability. They believed that what made them vulnerability made them beautiful. They didn’t talk about vulnerability being comfortable, nor did they really talk about it being excruciating, as I had heard earlier in the shame interviewing. They just talked about it being necessary.’

Let ourselves be seen

‘Let ourselves be seen’ is another one of the positive ways of facing traumas and imperfect situations.

Sharing our stories can help others with RSD and increase awareness in the medical community.

During RSD Awareness Month, there was an outpouring of RSD awareness projects, expressed in a diversity of actions – from awareness bracelets, t-shirts, memes for social media – it was so inspiring!

RSDr’s are sharing their experiences and joining together to change how RSD is diagnosed and treated – especially in the United States where – from the support groups we have been able to gather common experiences and symptoms to advance the understanding of RSD where so many in the medical field dismissed out of ignorance patients and sadly, learning as much as they can from patients – insurance and money dictate policy bypassing real advances in the more than 150 years that RSD has been around.

One of the reasons that I made myself vulnerable in sharing my story here in Letters of Courage – and with state and federal officials – as well as the City of San Francisco and its Civil Right Division – was so that I could get help for the injury caused by the botched blood draw at UCSF and for the delayed and denied treatment that lead to this life-long condition that has devastated my physical mobility, and requires long-financial support for living and treatment.

‘How to move beyond?’

One of the most painful aspects of my particular case is that I was left with a disability and limited ability to work professionally, and no recourse against UCSF. I tried every possible avenue to get help defending myself and even now, accepting that I am without any legal help, trying to access IHSS, food stamps and other social services like Department of Rehabilitation or the PASS programs, all of which have been denied to me.

So, every month, after spending for rent, I relive the trauma over and over when facing stark finances, and no physical ability – despite my young age – to change my financial situation each month.

My mind is sharp, but I have a serious nerve injury in my right arm, with neuropathy traveling up and down, from head to toe.

I went to a psychologist for help right away in December 2008, because I was so scared as I lost  my ability to walk so quickly, and the hospital had transferred and delayed my neurology appointment five months despite the ongoing acute situation.

My psychologist worked with me for months on developing alternative methods for handling the stress and anxiety that the disability had provoked, presenting new challenges I had never encountered.

It was he who called the UCSF Neurology department demanding to know why after six months of seeing me, there was no care forthcoming and I was being denied the treatment and care he had read about in the book on RSD.

UCSF never called back. We were to learn, they were about to do nothing. Except, gather intelligence on me to defend themselves.

Calworks told me two years ago when we were cut off from social services that I had ‘been on long enough.’

When I tried in August 2014 to restore benefits and IHSS help, I provide the judge and Calworks with the following information – from the attorney who represented a man in Georgia who had the same thing happen to him as happened to me – with the male nurse drawing the blood even after he damaged my nerve – but, this fellow VRSDr had good legal representation and he now has the financial resources to obtain treatment and meet his family’s living expenses every month.

Me – on the other hand – denied legal representation and medical care – must face every single month not having enough money for food and medicine – let alone anything for my son and his needs for school and in his life.

In case this is useful to others in my situation, here is some guidance for Calworks and Judges and other agencies that encounter people like with me venipuncture RSD.

The agencies need to be prepared that if hospitals like UCSF are never held accountable for malpractice injuries and disabling a person who supports their family and for denying medical treatment in crucial months to prevent disability, the client might need social services and benefits for life – and not because the person has done anything wrong or is gaming the system.

When institutions like UCSF get away with this type of discrimination, people suffer.

RSD Is Real: How to Help the Adjuster, Judge and Jury Understand

November 19, 2012Nelson Tyrone Legal, Statute

The purpose of this article is to offer an overview to lawyers of some of the key issues involved in obtaining significant settlements and verdicts on behalf of clients suffering from Reflex Sympathetic Dystrophy (RSD). Helping adjusters, judges and juries understand our client’s injury presents several unique challenges that, if not overcome, can leave our clients without significant recovery and, therefore, without necessary medical care. My hope is that this article can offer lawyers who are currently representing clients suffering from RSD the benefit of some of what we have learned from several years of RSD settlements and trials.

Some background on RSD

RSD is a debilitating and life-changing condition. It is a chronic pain syndrome wherein a traumatic injury and the sympathetic nervous system combine to create an excruciating cycle of pain. RSD was first recognized in 1872 by a doctor treating soldiers from the Civil War. The soldiers had bullet wounds or bayonet injuries that would heal completely, but the patients would continue to report excruciating pain. They would often show signs of swelling, discoloration, and temperature or skin changes. He called the syndrome “Causalgia.” Doctors have refined the nomenclature to refer to the disorder as Reflex Sympathetic Dystrophy (RSD) or the more modern label of Complex Regional Pain Syndrome (CRPS). I continue to use “RSD” to refer to the disorder, as clients and jurors prefer it.

Some basics

RSD begins with a traumatic injury. The injury can be severe or mild. In fact, the initial injury is often a minor trauma. Our firm has represented clients whose RSD began with injuries ranging from fractures, crush injuries and burns to bruises and needle-sticks. The medical literature includes cases of RSD resulting from sprains and even bee stings. How that initial traumatic injury develops into RSD is largely a mystery to doctors. For most people who suffer a traumatic injury, the injury eventually heals. But for roughly 1 out of 1,000 people the injury triggers the sympathetic nervous system and sets off a pain “loop” where the pain signal travels from the initial injury site, through the nervous system, then back to the site – keeping the initial injury and the pain response constantly agitated and inflamed.

RSD patients describe their pain as a “burning” pain that can rise and fall throughout the day. In fact, the burning characteristic of the pain is the hallmark of RSD. Throughout the day the RSD pain can remain around a “2” or “3” on the pain scale. However, when the pain “spikes” (because something touches the injury, or the sympathetic nervous system is triggered by stress, anxiety, temperature change or activity) the pain can be excruciating. Men compare RSD spikes to the pain of a kidney stone. Women compare it to the pain of childbirth.

How doctors make the RSD diagnosis

RSD is a classic diagnosis of exclusion. This means that doctors must “rule out” more common causes for the symptoms they are seeing with a patient who has RSD. Because RSD always begins with trauma, the doctor making the earliest diagnosis of RSD is often an orthopedist, neurologist, or even a general practice doctor treating a patient for a traumatic injury.

Many patients follow a similar treatment pattern:

  • 1. Traumatic injury;
  • 2. Injury “heals” but patient continues to complain of severe (usually “burning”) pain;
  • 3. Patient is noted to be “hypersensitive” in the area of the initial injury and may “guard” the injured limb;
  • 4. Doctor questions why patient is still complaining of pain (considers “somatoform”);
  • 5. Patient may show objective signs of RSD including extreme sensitivity to touch, swelling, excessive sweating, tissue discoloration, skin and nail changes, temperature differences between the RSD limb and the uninjured limb;
  • 6. Doctor refers patient for a “rule-out” of RSD;
  • 7. Eventually the patient is referred to a “specialist” (usually an anesthesiologist/ pain management doctor or doctor of physical medicine and rehabilitation).

This time-line can take patients months and often more than a year from the initial injury date to RSD diagnosis.

Capture the criteria

Even after the client has been diagnosed with RSD, explaining RSD to a jury and helping them understand that RSD is “real” can be challenging. The lawyer must make the disorder and the diagnosis simple for the jury to accept. We have found that the first way to do this is to identify a single diagnostic criteria and embrace it with every witness. There are several versions of the diagnostic criteria repeated throughout the medical literature describing RSD, but the most widely used criteria for diagnosing RSD are those promulgated by the International Association for the Study of Pain (IASP). (A more recent revision of the IASP criteria is referred to as the “Budapest Criteria.”) There are two types of RSD under the IASP Guidelines. Type I does not involve an identifiable injury to a nerve. Type II does.

Whether your expert and treating doctor feel more comfortable with the IASP or the Budapest criteria does not matter. They both adequately represent the state of the art in diagnosing RSD. However, you must chose a criteria and stay with it. Put another way: it is hard enough for an adjuster or a jury to understand RSD without forcing them to deal with multiple criteria for diagnosing it.

Prove it (over and over)

Jurors, already skeptical of lawsuits (and people who bring them), are understandably skeptical about RSD. The signs of RSD are often invisible, and it can be hard to understand how an injury so “small” (cut, burn, needle-stick) could cause an injury so “big.” I start cases on behalf of RSD clients with a healthy respect for juror’s skepticism and decided long ago that I would err on the side of “over-proving” the injury. I use three primary tools to prove a client’s RSD to a jury: photographs, a checklist, and confirmatory medical testing.


Many patients with RSD will have objective symptoms a jury can see. The challenge is that a client’s RSD symptoms (edema, red and shiny skin, or purplish skin – even sweating) come and go. We keep an evidence photographer on retainer to capture the physical symptoms whenever they present.


Doctors diagnose RSD based on a combination of symptoms. It is important to demonstrate each symptom to the jury in a way they can remember. We comb the medical records and interview friends and family members for witnesses who have seen the objective symptoms of RSD. We then create a checklist that identifies when each of the IASP criteria have been met. Presenting a checklist educates the jury that all the symptoms do not appear at the same time but will appear on different days and thus be seen by different people. The checklist is also an important visual tool to show the jury that RSD is a real, diagnosable condition.

Confirmatory TestingThroughout the years, physicians have attempted to use nerve blocks (stellate ganglion blocks or phentolamine injections), x-ray imaging (three-phase bone scans) and even NCV testing to confirm a diagnosis of RSD. Each of these methods produces high percentages of false negatives. The current state of the art in confirmatory testing is Isolated Cold Stress Testing (ICST) with laser thermography. This is, essentially, a sophisticated time-lapse imaging test that compares blood circulation in the RSD limb with the non-RSD limb under temperature “stress.” The testing generates a color thermograph image that allows the jury to “see” the changes in the RSD limb. Only a few hospitals in the country are able to do this testing, but it is powerful scientific and visual evidence.

Expert, treating doctor and life care planner (the three-legged stool)

For the clients whose RSD is permanent, I routinely see life care plans that include electrical implants (spinal cord stimulators, peripheral stimulators, intrathecal pumps), prescription medications, and “off-label” medications (Ketamine). These life care plans can often total several millions of dollars in future medical care and interventions. In order to recover the full value of the life care plan, it is critical that the treating doctor, the expert and the life care planner agree on the treatment contained in the plan. Our firm retains out-of-state experts and life care planners who often have 20-30 years experience with RSD patients. However, I have seen instances where well-meaning treating doctors can undercut a life care plan by millions of dollars simply because they are unfamiliar with the current state-of-the-art possibilities in RSD treatment. Therefore, it is imperative that your client do their own research and identify a doctor in their region who treats a large number of RSD patients, attends the national seminars, and is aware of these state- of-the-art RSD treatments.

Pitfalls (defense IME’s, defense experts and defense surveillance of your client)

Defense lawyers routinely rely on “expert” doctors who rely on outdated or improper criteria to rebut the diagnosis of RSD in your client’s case. I have seen several “experts” point to the AMA Guidelines (4th or 5th Edition) criteria for RSD that contain much more stringent “criteria” than the IASP or Budapest Criteria. This approach can be easily debunked. The AMA Guidelines contain several indications within the text that warn physicians against using the guidelines as a diagnostic tool. Another approach I have seen is an “expert” in an IME rejecting an RSD diagnosis because they did not observe all of the symptoms of RSD during their (often abbreviated) examination. Of course, no RSD patient will show the full range of symptoms on any given exam date. Finally, since the symptoms of RSD can come and go, the client will have “good” days and “bad” days. It is not uncommon for the RSD client on a “good” day to be able to grocery shop, drive a car or carry groceries with their affected limb. The Defense will often conduct secret surveillance of your client in order to show video of them shopping, driving their car, or picking up an object. We deal with this issue head-on. We educate the jury about “good” days with RSD, and our client always is given a chance to talk to the jury about what they can do on their “good” days.

In shortRSD is very scary for clients. It can be hard to understand for an adjuster or a juror. The fear of how to prove RSD can be scary for lawyers. However, RSD is very real, and our clients need our help. Our firm has learned that we can achieve multi-million dollar settlements and verdicts on behalf of clients with RSD when we do the work to educate the adjuster or juror on how “real” this disorder is. It takes painstaking work, and we must avoid the many pitfalls the Defense can create for us, but our clients deserve it.


‘Light a Flame’ Campaign for RSD/CPRS Awareness and Fundraiser for Art Healing Community

Posted on

Light a Candle 20141020 Nov 3

It has been some time since I have written.

I fought for so long to try to get appropriate medical care, and the social services that I need as a result of being disabled by VRSD.

I gave up. I stopped trying. I didn’t have the fight to fight them and stay alive.

I had to choose my ‘aliveness’ – which – during the second half of the month, when there is no food or medicine – I wonder what that means in a society that allows a hospital to hurt a patient, dump them from care, accuse them, and abuse someone with the highest known pain levels on the McGill Pain scale.

In October 2014, I was invited to give a talk about my artwork. Sitting in the audience, with a shirt with UCSF logo imprinted, sat a man who took notes before leaving as I finished. Can you imagine what it feels like to be followed by UCSF?

Because I walked into their ER. Because I was injured. Because I developed VRSD. Because I am smart and knew something was really wrong about how I was being treated and seeing others with RSD being treated the same.

This nightmare never ends – how this hospital can get away with what it does.

When I first started writing about what happened to me – beginning in December 2008 – I was stumped as to what was happening to me and why I was not getting medical care. It was too late once I realized what had been done to me, and it would be 2012 before I even had the MRIs showing very logical reasons for the pain I experienced. UCSF’s feigning they did not know was just the beginning, as we’d learn in 2012 that UCSF knew about the spine damage in 2009.

These are tough questions for an adult.

What about for a child?

Over a year ago, I learned of a young girl who had gotten VRSD from a shot. Like what I experienced, her mother had the fight of her life. In their case, the state they lived in had zero – 0 – doctors who know about RSD, let alone VRSD.

Venipuncture Reflex Sympathetic Dystrophy results from a blood draw or vaccination or other venipuncture that causes nerve damage that leads to RSD.

Venipuncture RSD cases in Japan

A rash of VRSD cases arose in Japan in 2012, resulting from the HPV vaccination. So many people experienced the VRSD, a case went all the way to the Japanese Supreme Court, which ruled cases of liability could move forward.

Lack of Support for VRSD Patients in U.S.

I tried so hard and in so many ways to move my life forward after this RSD. Its been a cruel result that I am excluded now from IHSS services, and other support services that might ease the financial situation that is every month without being able to work.

I have set up a paypal account on the advice of fellow RSD supporters who ask how they can help. Donations are very appreciated and go directly towards basic necessities beyond what is left after rent from my SSDI. Which is $75.

I continue to try to get PASS support from SSDI for the time I used SSDI funds to pay expenses related to making money but I did give up on trying to go back to school since DOR was unwilling to pay the difference with the scholarship I received and refused me to find a different school.

I am working hard to be a positive force of support in the RSD community and I have developed new art project for RSD Awareness which I am launching November 03, 2014. I’ll write more about that art project in my next post.

For now – will you take the ‘Light the Flame’ Challenge? For the month of November, please light a Solidarity Candle and #LightaFlameforRSDAwareness or #LightAFlame and post to social media. If you can spare to make a donation to any individual RSDr – your contribution will make a very important difference during the holiday.

Or donate to an art project like the one I will describe in the next post – one of many RSD projects by people like me trying to raise awareness of RSD.

Or contribute to your favorite RSD charity.

Either way, post your pledge and solidarity with the hastag #LightAFlame or #LightaFlameforRSDAwareness!

Light a Candle Campaign  20141020 Nov 3 Full (1)
#LightAFlame #LightaFlameforRSDAwareness
Join the ‘Light a Flame’ Campaign to bring Awareness to RSD, a neurological condition resulting in the majority from nerve damage after medical procedures or surgeries and for which little is known more than 150 years following its first diagnosis during the CIvil War. As a result of ignorance, unfortunately, many patients are taken advantage when they are most in need of medical support, access and treatment for the condition known to have the highest pain levels on the McGill Pain Scale.

Venipuncture RSD and RSD Research

Posted on Updated on

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.

Open Windows

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.

Venipuncture RSD

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.

Empowered Patient

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.

What’s in a Name?

In my research, I have recently come across an interesting article about RSD on one of my favorite sites Definitive Link Library for CPRS/RSD, Chronic Pain. Research for research.

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.

Moving Forward

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.

Moving forward. Music to my ears.

I will be at the annual gathering next year!