You might remember I started off 2011 expressing hope that CPRS patients will be embraced as partners in seeking a cure and treatment for CPRS.
It is my wish that CPRS patients no longer have to deal with such drastically uninformed, and at times, antagonistic responses from doctors facing patients with mind numbing pain levels, without any understandable cause beyond an injury that has healed but the pain has not turned off in the neurological wiring of the brain.
I have shared previously that when the symptoms traveled from my right arm to my right leg only a few short weeks after being diagnosed with CPRS, the insurance and doctors insisted I could not be seen until I was transferred to the public branch of the same hospital. I only had health care insurance through a public program for low-income people. As an artist living in San Francisco, I was unable to afford health insurance for myself and my child, and I had always been grateful for the preventative care I had received. I was even happier with the clean bills of health each year.
So, when I woke up with a what turned out to be a urinary tract infection, my health provider, as a precaution sent me to emergency since I was bleeding. A needle inserted to draw blood hit the nerve in right arm.
My life changed forever in that instant. What followed was pain so high in my right arm that I howled through the nights, terrified by what was causing so much pain. The nights were the absolute worst, the pain too high to sleep for very long. I was prescribed painkillers and it did help put me to sleep. But, soon, it became clear the pills made me so out of it otherwise, I had a hard time staying awake when my child came home from school, me no longer able to walk him.
I could not take the pills anymore. I choose to retain the little energy that remained for my child so I could keep myself awake since the painkillers completely knocked me out.
I saw the same neurologist at the public hospital as who had diagnosed me in the first, private, hospital, where I had been seen in the ER when the nurse drew the blood that hit the nerve in my right arm. Despite emailing my neurologist when the leg symptoms started a few weeks later, to no avail, insurance wasn’t going to approve me seeing her any sooner.
My general provider saw me several times in those next few weeks but she was not a neurologist. Her phone calls got my appointment moved up two months, from the four they wanted me to wait.
When I showed and described the symptoms I was having in my leg, the neurologist did not agree that the CPRS had traveled to my leg. She did not so much as offer me a cane. She sent me to the Physical Therapist who sent me right back and told the neurologist he needed a diagnosis to treat me.
Two plus years later, the same doctors not only won’t see me, they say they don’t know what I have or how I got it. They keep trying to go towards Fibromalgia which I don’t understand since I had a clear cause that incited the CPRS. In fact, the attending neurologist participated in my diagnosis and when the neurologist asked the attending if CPRS can be sparked from a needle injuring the nerve, he said it can, it has been documented previously, although, it is rare.
When my new general physician referred me this Spring to PT and Pain Management for CPRS, and instead, the Pain Management and Neurology said I was “banned” from care, I realized that I was never going to get care at this hospital in which I was injured. Had I had private insurance, I would have moved away from the entire hospital, both its private and public arm, a long time ago, but I didn’t.
I didn’t realize that the last two years have been used instead to build a case against me. I am ‘banned’ because I made too much fuss about my leg and whether it was CPRS, and because I made a fuss at being asked if I had filed a lawsuit, when, nine months later, I finally had my first appointment with a pain specialist, who did not care at all about speaking to me, in fact, she said I could leave even before we had talked. When I first asked, then, insisted that I be allowed to ask her questions about my symptoms and EMG test, she refused and I was ushered out.
When my general physician’s referral to pain management was denied again this summer, I asked to know why. I was simply notified that I had been ‘barred.’
Now, the problems with my general physician have escalated. No longer available are any of the specialists who can help, my general doctor has taken to focusing on a Vitamin D deficiency. Later, we find out the same doctor secretly noted in my Social Security Disability file that I have a ‘mood disorder’ while never mentioning this condition to me, nor to my father, a former psychiatrist, when we asked together whether my symptoms were the result of a physical or mental condition.
My doctor said to us both the cause of the symptoms were physical, not mental. Unfortunately, the doctors just didn’t know what was causing the symptoms, but it was definitely not the nerve damage to my arm. And, since that was their position, I could not have any tests or support from Neurology nor Pain Management.
I start to understand, not only will the hospital go to all lengths to protect itself, it will even lash out and lie to gain its objective.
This last visit, the doctor does a cursory neuro exam by touching the sides of my face, my arm, my leg, as if these are tests for CPRS. She looks at my fingernails. She ignores my symptoms of extreme migraines, nausea, debilitating pain when I walk and burning in my right arm. For two years now I have been unable to walk unassisted, and even when I do, the pain goes to such levels that I have found peace only when I don’t walk. These symptoms are ignored every visit billed to Medicare, as has happened now consistently for two years. I see the hospital trying to erase even that I was injured in their ER.
My general physician didn’t want to prescribe a wheelchair, even though I explain I am a single mother who needs to be able to get out and care for her child. Reluctantly, the doctor prescribed a wheelchair. She ‘forgot’ to send the instructions on how to or where to order the wheelchair. She apologizes, it was an oversight. When I asked during our appointment for the information, she refused and said I needed to contact the insurance provider. I called the insurance, and they don’t call me back.
This summer, an overwhelming sadness I felt when I was told I was barred from access to care. It was truly a moment of complete loss of faith. The love of friends, and family, the reaching out to hold my hand-made the difference. I am grateful to these people because I never experienced such a loss of faith in the binds that tie together community and the world.
I can’t say how deeply this kind of approach hurts. It’s truly one of the worst feelings in the world to have doctors, hospitals and insurance companies so coldly turn their back on care. Even when I said I simply wanted to get better, I didn’t care who was at fault, and to date, no lawsuit has been filed, still, the care is not forthcoming.
The way that I have survived those feelings has been to turn to alternative care and spirituality.
I am afraid now of doctors, and I do not trust them.
My dad was a doctor. He was a doctor from a time that perhaps I compare my care now. I have never been seriously ill before, and I just never had much experience with hospitals or doctors. All interactions prior had been good, in fact, I never even would have questioned a doctor. I trusted. And, perhaps that is why I have been so blindsided, so unprepared for the fight that the insurance and doctors and hospitals, who know perfectly well how patients who are sick have to fight to get care, even patients with private insurance.
I thought it was because I only had San Francisco Health Plan, an initiative that seemed to me to be wonderful, and for which I was grateful. But, when I witnessed lies and delaying treatment, resorting to tactics like not returning phone calls with instructions for a wheelchair, I see a terrible replica of the same horrible insurance scam. I wonder, do these programs collect Medicare money for the services it provides, and if so, does it not have a fiduciary responsibility for the services paid for with that money?
So, it is that I was happy to see an article in eOrthopod that a new Scoring System for CPRS has been developed by specialists from a range of institutions in the United States and the world. The eOrthopod article points out that, until now, patients were diagnosed with either ‘you have’ or ‘you don’t have’ CPRS. The Scoring System appears to reflect the reality of CPRS patients in that symptoms appear to not only be different in-depth and range for each patient, but to also confirm newer research that is pointing to even the uselessness of the Type I/II categories.
The Complex Regional Pain Syndrome Severity Score (CSS) will consist of a checklist of common CPRS signs and symptoms related to temperature, skin color, sweating and swelling as reported by the patient. A second section of the CSS Scale evaluates the doctor observations in exams, such as pain with prick test, changes in skin temperature, and decreased range–of-motion of the affected limbs.
The Complex Regional Pain Syndrome Severity Score (CSS) was put together and tested by experts from the rehabilitation centers, including Institute of Chicago, Vanderbilt University School of Medicine, Trauma Related Neuronal Dysfunction Consortium in The Netherlands, Rush University Medical Center in Chicago, two German universities and Stanford Medical Center in California. The article does not mention what type of experts created the scale.
The experts believe that the CSS can accurately identify people with CPRS and the severity of their condition. With time, this system, it is hoped, will show changes or fluctuations in individual cases. eOthropod is recommending this system to improve communication among health care professionals treating patients with CPRS.
I’d like to venture to say that hopefully the Complex Regional Pain Syndrome Severity Score (CSS) can help communication among professionals and patients. This is deeply important. With so little understood about this CPRS, it’s a wonder that patients aren’t included more in the process of discovery.
Perhaps the CSS will help. However, honestly, until the medical profession starts working more in partnership with patients, CPRS can not be resolved in the haphazard way it has been addressed until now.
I’d like to float the idea of a CPRS Databank that all those researchers could access, into which the patient information and symptoms can be collected and evaluated for further study. This Database could also serve in registering CPRS patients injured and contracting CPRS as a result of injury at medical facilities. My case is a perfect example of how important it is that CPRS patients have some oversight into how insurance and the very same hospitals are treating or not treating patients.
I seriously do not know how a top neurologist could tell me CPRS doesn’t travel.
I believe the internet is a tool CPRS patients and doctors/researchers are already using to speed up the understanding of CPRS. In fact, I venture to guess that the increase of knowledge regarding CPRS is directly linked to our increasing global connection through the Internet.
As everyone toots the horns for medical ‘modernization’ with electronic patient records, as a patient, I have the same feeling about that system as I do about all the money being spent on new buildings while patient care suffers tremendously at hospitals. Instead, a Global CPRS Databank, can offer real bang for its buck, and bring to an entire condition to bear the resources of specialists around the world. This is particularly important given that political views regarding CPRS treatments such as ketamine stymied research in the United States, and sadly, patients asking for what is promised as total relief from CPRS are considered as hipster drug addicts in search of a rave drug.
Taking that a step further, a master Global CPRS Databank can allow for a global study of CPRS, and perhaps the identification of trends in symptoms.
Why does the CSS scale not mention nausea and migraines? These are consistently reported symptoms with CPRS. What about the skin lesions? Fluctuations in blood flow?
The CSS is a step in the right direction. However, even a cursory review of chat rooms and blogs about CPRS can show even the untrained observer that many symptoms were excluded from the CSS.
If I can, as a patient, find my symptoms reflected commonly among CPRS patients, why is the CSS lacking the same symptoms? Perhaps the eOthopod article, geared as it is towards medical professionals, didn’t cover all the symptoms, and so, perhaps the aforementioned symptoms are included in the CSS. Yet, in this day and age, a simple daily Google alert for CPRS brings to the average patient resources that, decades ago, were not available.
Is it any wonder then that CPRS patients as a whole feel that care and response from the medical community to CPRS is plainly and simply not helpful? Doctors are stuck reading some scale that fails to take into account real, documented symptoms. They are doctors. Policymakers and Specialists, however, have a responsibility to pick up the tried and tested “common experience’ technique to bear on conditions such as CPRS and respond to patients. And, especially not to use a scale unless it takes into account patient’s experiences. After all researchers have access now though to millions of CPRS patients that can be collaborators in finding a cure and treatment.
One of the biggest problems reported with CPRS is the difficult communication between patient and doctors. Its one reason that a ‘rag tag’ approach by doctors with CPRS patients is cautioned against because the CPRS patient often develops distrust and can leave care all together.
Will the CSS instead set up doctors and CPRS patients for more tortured conversations?
The one area of focus for me as I start learning more and more about CPRS more is – why?
Why is the medical community at odds with CPRS patients? Why are insurers and others interested in characterizing CPRS as a “crazy” disease as Fox News recently reported?
I am curious to understand the forces behind the interests involved in CPRS. I have to wonder why the CSS is not exhaustive rather than limited in the symptoms it checks, and to question whether the CSS will be yet another tool to divide patients and doctors with pressure from insurers and other possible responsible parties to not make a CPRS diagnosis with expensive and, potentially life-long costs?
I believe it’s really important that patients have a resource to which they can turn to find honest answers from real experts without a stake in CPRS, either way the diagnosis. Too often CPRS becomes a battle ground with the patient trying to cope both with an illness, and trying to understand the war. It’s a frightful place to be.
I am well-educated, I can hold my own. But, what came after CPRS simply knocked me down.
First, the condition.
Then, the fight for treatment.
A fight when one is ill is just plain crazy. It’s why I had to constantly, constantly redirect my attention away from the doctors and towards myself. What I could do to help myself.
When one is in that much pain, I know, it’s not possible to fight. If you are a single parent, or low -income or even without insurance, fighting is out of reach, making it day by day is all there is, and that knowledge can make one feel very hopeless and increase stress. That’s where my mantra “I am the doctor” came from.
It came out of praying to Creator. I just couldn’t believe Creator would leave the people without medicine and I thought about times before doctors. I thought about and was inspired by people who had taken control of their own health. Stories of people refusing to believe they had a disease and then they didn’t. Stories of healing people would share with me to give me hope when I would sob about the doctors not caring week after week that I could no longer walk.
I have still tried, when I could. To fight. I have brought administrative complaints against the insurance. When the judge believed the doctor who said I was seen by a pain specialist this summer when I wasn’t- just plain wasn’t seen by a pain specialist, but instead barred – I realized, there is not going to be any oversight, there is no one who is going to swoop in and be witness to what happened, or even care. I am just one more CPRS or other patient without access to care.
I fought within, wondering how it was that the doctors were not pointing at all to the needle, the injury that precipitated what happened. I asked my father, begged him to explain over and over again how it was the doctors kept telling me they did not know what caused the condition when the very same day I was stuck in my right arm with a needle.
As I am two years into this now, and after trying to get the hospital and doctors to be accountable, I see my original instinct was correct. In those moments when I had a clarity that only level 50 pain can bring, I realized my energy would be spent better trying to heal.
Now, with my pain more properly managed – I can say that what I will be doing is speaking up about the way that CPRS is dealt with specifically in the United States, and how I think communication between doctors, researchers and CPRS patients can be improved. I don’t think one should 1) be hurt in a hospital, 2) be thrown out of care, 3) not receive adequate protection, nor 4) suffer the devastating economic consequences that result from CPRS.
It was 2 years before I received disability, in the meantime, we went through homelessness, extreme poverty and food insecurity. The welfare agency that could have assigned In Home Support to help my child while I was too ill to cook, clean nor do anything else, instead lied and told me until I got Social Security, I could not have in home support services.
For two years, my tweener was in-home support, on top of going through homelessness, and all the while working hard at school.
These kinds of tactics from support agencies who are also unfamiliar with CPRS is on top of fighting insurance, and the general lack of understanding in the general population.
If the CSS is going to be helpful at all, it needs to be complete by taking into account patient symptoms. When symptoms are not included in the ”official” description, but all over the internet from patients with the condition, there is a huge disconnect that is adding to communication problems about CPRS.
If doctors had a cure for CPRS, or CPRS were like so many other diseases with clear options, we’d be talking a different story I suspect.
If the CSS is going to make a real difference, it can be one of many global tools used to help CPRS patients. The kind of coordinated support needed for CPRS patients can span not just medical, but because of the overwhelming debilitating physical changes experienced by CPRS patients, needs to include agencies like social security on the federal level, as well as, state agencies like Calworks which never should have been allowed to deny in home support to a CPRS patient over a two-year period, particularly since documentation in my case of the ongoing CPRS evaluation is there.
I have waited a long time before speaking up and out about my experience with CPRS. Frankly, I was in shock and then, the trauma of having agencies and organizations supposedly there to help, organizations up till now I had never doubted as supportive, were instead vindictive and petty and untruthful.
As a whole, it’s a trauma that my family and I continue to recover from today, going into the third year.
I believe the approach these agencies took was allowed under the current cover of “entitlement’ bashing, and its a horrible shame because behind the rhetoric are real people.
Sadly, in my case, I now must go out and seek treatment elsewhere when I finally get Medicare, in another few months. In the meantime, I push through the anger by writing, researching, learning, growing, and ultimately, taking responsibility for my own health.
I’d like to think had I had the money for stellar health insurance things would be different, but so many families will tell you a different story.
In those horrible hours of the utmost pain, I remember I would beg the Creator to understand why this had happened. I rolled through my life, I saw errors, and I apologized. I even apologized and mended with people I had hurt. As the symptoms continued, I came to understand that, emotionally, that healing had been helpful, but, it had not changed the reality of the symptoms nor the impact of CPRS on every level of my life.
When a friend looked into my pleading eyes, and said, ‘you didn’t do anything to deserve this, bad things happen to good people every day,’ I knew all I could do was try to learn from my experience, and, also, help the medical field learn too.
As I go about taking accountability for myself, I will be asking it now too of the medical field.
If CPRS patients and the medical field come together, so much can be accomplished, especially with the global potential of the internet.
In those wee hours, as the light of the morning arrived, so did an acceptance that indeed I had been put here, had this experience for a reason. I am a writer, an artist, a filmmaker, I figure Creator knew that too. So, I am here now to share my experience. It takes Courage. Thanks for reading.
This entry was posted in The Journey and tagged Alternative healing, Complex Regional Pain Syndrome Severity Score (CSS), CPRS, CPRS Databank, CPRS Test to Assess Severity of Complex Regional Pain Syndrome, eOrthopod, Fox News article on "crazy" illnesses, Global CPRS Databank, Healing, http://www.eorthopod.com/content/a-new-test-to-assess-severity-of-complex-regional-pain-syndrome, Institute of Chicago, Letters of Courage, new tests for CPRS, One of the biggest problems reported with CPRS is the difficult communication between patient and doctors, RSD, Rush University Medical Center in Chicago, Spirituality, Trauma Related Neuronal Dysfunction Consortium in The Netherlands, two German universities and Stanford Medical Center in California, Vanderbilt University School of Medicine.