CPRS Test to Assess Severity of Complex Regional Pain Syndrome
The last six months have been very tough. Apart from the loss of the housing subsidy, even more cuts have fallen on our family. I no longer have money for medicine, often, short on food, and forget any extras. Everything has gone to rent just to ensure I won’t be on the street again, with no physical strength even to walk.
At the same time, the discouraging experience at Stanford only grew more so:
1) After returning to my GP in October after Stanford refused to do anything at all, I begged and cried for an MRI – what Stanford would later characterize as my “demanding medically unnecessary testing.”
Well, over the next 3 months (yes, 3 months since my GP refused to order all the MRI’s at the same time) the MRI’s of my spine, neck and finally, yes, finally, ONE MRI of my ankle/foot – of course, I was denied an MRI of my entire right leg (now that would just be too much!) – REVEALED MANY SURPRISES.
While UCSF and Stanford claimed I had ‘mental health problems’ or ‘fibromyalgia’ – yes, you guessed it, with absolutely NO testing to back their claims – this is what they missed while they did nothing for the last 9 months – before throwing me out of care just like Stanford PM threatened – as they claimed because I had ‘demanded medically unnecessary testing’
A) Significant damage in my Spine that requires Orthopedic Surgery.
B) A ganglion nerve cyst in my right ankle,
and, drum rolllllll
C) the chronic tear that appears on the top of my right foot – right where I pointed to every single time, and completely ignored for over 3 years! (Yes, the same three-year time limit for a Medical Malpractice suit against UCSF for the Venipuncture Wound).
So, as Stanford and UCSF were padding my file with fake Pain Management appointments, and failing to conduct ANY tests at all, they were also trying to build a picture of the ‘savage, angry, violent’ Indian to fit their narrative of why they did not do their jobs, nor, conduct any of the necessary further testing to ‘eliminate’ anything else.
No testing of anything, nada, zilch.
So, by last October when Stanford sent me on my way, the three years expired during which from the time of the nerve injury from the blood draw, complaining that I was ANGRY, they failed to conduct any testing nor find the damage described above.
What was worse was that:
1) After the MRI revealing the ‘extensive’ damage to my spine as my GP mentioned, we both – she and I – called Stanford PM to follow-up and get an assessment of the spine damage. We called over and over and over. No reply, no response.
I called Medicare to ask why I was not getting appropriate treatment and response. Stanford’s Patient Advocate contacted my GP’s office staff to ask about their experience and when they described the numerous lost faxed documents, appointment and MRI requests and failure to call us back, all they got from Stanford was ‘sorry.’
What did I get? I got a letter stating that ‘my behavior’ and ‘demands for medically unnecessary’ testing was the reason Stanford, after 9 months of NOT even seeing me, testing or doing a thing, said they were no LONGER going to see me as a patient.
When the Patient Advocate said Stanford PM would send a report my GP, I laughed. Was she joking? What were they going to report?
From August 2011 to June 2012, I was seen a total of 7 hours between Stanford PM and Neurology.
Stanford Neurology said there was nothing more they could do – mind you, they had done NOTHING, not even an MRI despite the visible continued shaking of the arm and the PM diagnosis of the VRSD/CPRS II – I later found out, Stanford Neurology had ordered an MRI in August 2011, but the MRI was ordered and cancelled with no one telling me at all.
The way I found out? When I called for my follow-up appointment with Stanford Neurology, the receptionist told me. Medi-cal has now confirmed the MRI request was submitted and rejected. I had never been told. NEVER.
I have submitted a letter to Stanford asking that hereon forward, STANFORD SHOULD REFRAIN FROM REPORTING a THING about my health.
2) When I went in to get the results of right foot and ankle MRI – mind you, this being the MRI that I was ABSOLUTELY unable to get any UCSF or Stanford doctor for 3 years- despite the mobility disability and EXTREME PAIN, the Foot/Ankle doctor’s receptionist smiled when she saw me – ‘you are going to be very happy!’
I knew then that they had found in the MRI the cause of the pain and walking difficulties. Maybe now he’d order a whole MRI of my leg in those spots that I told him hurt so much.
I knew the MRI showed the damage I had pointed to these three years.
Yet, instead, the doctor didn’t mention the chronic tear or cyst found by the MRI.
No, not at all. Not one peep. This from a doctor who continues month after month to damage my credit by showing a pending amount for doctor services not even provided!
No, the only way we learned about this information on my foot and ankle was thanks to a dear friend who drove all the way out to the laboratory herself, and got the films and report.
When I read the report, I literally SOBBED!
3.5 DAMN YEARS! All the times I had been told they just ‘didn’t know what I had!’ After all kinds of nasty notations about me:
a) Mental Health Problems: yet, no testing, referrals nor even talking to me about any mental health problems. Rather, these ‘mental health’ problems were reported to SSDI, and included in my File.
Instead of asking why I was angry after so long of not being listened to or treated, Stanford threatened to cut off medical access because I had tried in vain to have Stanford find my medical files which they said they had ‘lost’ – Like the lost faxed appointment and MRI requests, Stanford had also supposedly ‘lost’ my medical records.
This was all quite RICH given that I never got any access to those shiny machines and stellar medical knowledge. Instead, myself and my doctor were treated to rude and snickering receptionists who said over and over and over how someone would call me back and never did, or would call the Doctor’s office and never did.
b) Fibromyalgia was something since UCSF even that the doctors kept suggesting, yet, there was ABSOLUTELY no testing of any sort to confirm nor corroborate this claim. In fact, Stanford and UCSF physicians kept INSISTING that I had pain on both sides of my body – which fit the FIBRO criteria – but was simply NOT TRUE!
In the last appointment with Stanford PM, I insisted in front of two witnesses that they stop, STOP insisting I had pain and symptoms on both sides of my body when it wasn’t true. UCSF had done the same thing.
But, I was also SHOCKED and HORRIFIED why this foot and ankle doctor, who I had trusted and was a colleague of my GP, would simply LIE, and HIDE medical facts from me.
Since I didn’t know he had hidden the facts during our appointment, today, I called to ask that the Dr. call me and provide a complete analysis of the MRI results.
His receptionist was quite surprised to hear the DR. had never given me the results of the MRI.
No, in my appointment with the foot/ankle doctor, he instead suggested maybe I had a ‘pinched nerve’ or perhaps it was CPRS and there was ‘nothing more we can do for you.’
When I asked why it had taken so long to get the test, the Dr. replied that ‘some people think it’s easier to get benefits…’
I was stunned – this man was suggesting that their failures as doctors and institutions pointed to me wanting BENEFITS! Are Doctors and Hospitals now the GateKeepers for Public Benefits?
And, if so, how makes up for their mistaken beliefs that ensure that the patient in fact DOESN’T GET FAIR AND EQUAL ACCESS TO BENEFITS DESIGNED FOR CPRS AND DISABLED PATIENTS? WHO PAYS WHEN THEY MAKE A MISTAKE IN JUDGEMENT?
I told the foot/ankle doctor that he didn’t know me – knew nothing about me or the job I was up for at the time of my injury – who I was as an individual, how hard I had worked my entire life, how excited I was about MY LIFE and OPPORTUNITIES, and WHY WOULD HE THINK THAT ABOUT ME? DID HE KNOW I WAS A FULBRIGHT SCHOLAR, GRADUATED TOP 30% OF MY LAW SCHOOL CLASS?
WHAT MADE HIM THINK I’D WANT TO BE ON BENEFITS RATHER THAN LIVE MY DREAM?
I was just stunned.
Well, that was not to be the end of my day.
No, next was a visit with my GP who I had seen for over a year. She had been the one who ordered the first MRI after 3 years, and found the significant damage in the spine. She had referred me to the foot and ankle doctor.
What I was to experience next was simply stunning.
I had asked for a longer appointment because I had been having continuing problems with my vision, and in fact, during a recent exam with the eye doctor, when the light went into very edge of my right eye, I nearly threw up and passed out. I was also starting to have some new dystonia and other ‘freezing’ in my arm.
Not having money for medication has meant that my symptoms have begun to dominate my life again, impacting my sleep, ability to eat, and to manage the pain. In the process of the medication moving further out of my system with no replacement, I noticed the numbness in my right hand and arm, and I wanted to talk about the swelling and extreme pain in right leg.
I now wanted an MRI of my right arm.
With the MRI’s we had done already, we were starting to pinpoint the physical issues that were present in my body, and I wanted to have my right arm examined in this way too, to reveal if there was continuing nerve damage.
I asked if we could do an MRI of my right arm.
This doctor who had treated me for over a year suddenly looked at me and said ‘Catherine, what more can I do? I’ve sent you to 4 neurologists – UCSF, Stanford and two in the city – and YOU DIDN’T WANT TO GO TO ANY OF THEM!’
What? What? What?
I was stunned but before I could react, the doctor had left and gone into another patient room.
I simply couldn’t take it anymore, and I broke down crying right there. The doctor’s assistants came in and I said – ‘what is going on here? UCSF – I didn’t even come to this doctor until after UCSF so how could she refer me? Two of the Neurologists that she referred me – 1) refused to even exam me because ‘did I expect him to believe a needle had done that to me?’, and 2) the second Neuro didn’t want to get in the middle with UCSF. Stanford Neurology said there was ‘nothing more they could do and perhaps I should go to the Mayo Clinic!
When the doctor came back, she denied in front of her assistants saying that to me – basically, calling me a liar, which upset me even more. Here was this doctor I trusted, and she was simply LYING.
What I learned next shocked me.
I had tried to explain to my DR that I had learned that my aunt had been diagnosed with MS. I wanted to know if it was possible I might have MS, and should we do a comparison MRI of my brain given that the last one was in 2009.
I said this seemed important given how FAST the spine damage progressed.
This is when the Dr. told me that, in fact, the UCSF MRI of my spine, neck and brain, had, in fact, SHOWN SPINE DAMAGE!
What? What? What?
Neither myself, nor my father, were told this information by the UCSF GP, EVER.
The UCSF doctor, when we begged to know why UCSF was not doing any testing, or treatment, they said ‘they had no idea what was causing the walking problems’ although they were POSITIVE it wasn’t RSD.’ When I asked why I could not have the MRI, we were told it was ‘political.’
Last week, we went to UCSF to get that 2009 MRI and report.
I had requested that MRI in August of 2011, never given, and then again, in November 2011, when I was told the MRI and report would be ‘sent to me in the mail,’ – it NEVER WAS.
Well, last week, they also refused to give the MRI over, claiming, once again, that they were going to ‘send the MRI and report’ by mail.
We were very lucky that the Radiology Department was able to give us the MRI.
Not only is the spine damage EVIDENT, and never mentioned to us, but, I’ve also learned that I had A CYST IN MY SINUS CAVITY.
We were NEVER TOLD ABOUT THIS CYST EITHER, NO TREATMENT WAS OFFERED. NOTHING.
To say I have been totally disillusioned with the efforts all these doctors and hospitals went to protect UCSF against Medical Malpractice, even the Administrative Court where I went over and over to seek relief to access medical treatment – its beyond comprehensible.
While I sit here with no food, no money, to think of what I have been subjected, just to protect UCSF, its beyond comprehensible.
My doctor saying I didn’t want to see a Neurologist is beyond belief given the numerous times and documented times I BEGGED to be seen by a Neurologist. I even filed a request for access to a NEUROLOGIST with the State of California, so, for my DR to now suggest I didn’t want to see a Neurologist, was more than I could bear.
I was so hurt, angry, distraught, I am sure there are more notations of what a ‘bad patient’ I am.
Last week, I went to a new Neurologist here in San Francisco. Referred by Medicare. A fresh start, with the new MRI’s and no longer being treated like some crazy woman out for benefits.
The Neurologist listened, then, asked, “have you filed a lawsuit against UCSF?,’ as the doctor asked me to hold my arms out and touch my nose. ‘A settlement?’
The Neurologist asked me to send her the ‘evidence’ of the MRI’s. I did.
I’ve never heard from her again and my calls to her office have gone unanswered.
Each time these doctors choose to protect UCSF and do nothing for me, sending me home with CRPS II, Spine Damage, Ganglion nerve cyst, Sinus cyst, with absolutely no care or concern or follow-up, it feels like a part of me is torn apart.
I have NEVER BEEN TAKEN SERIOUSLY SINCE I WAS INJURED AT UCSF, and even now, HAVING MRI’S AND EVIDENCE THAT I AM HURT, AND SICK, AND IN NEED OF MEDICAL ATTENTION, AND I STILL CAN NOT GET IT???
Let me tell you, this is one of the worst feelings in the world.
I can not help but notice that many CPRS patients deal with this kind of run around. I’ve heard that doctors who treat CPRS HATE these patients, hate their complaints, and many of them, think CPRS is made up!
Like that those doctors who were protecting the BENEFITS, all these trusted medical professionals worried more about UCSF, protecting public benefits and their own asses and nothing about caring, helping, healing or serving me.
In concert, these institutions prevented me from 1) receiving information about my own health and conditions, 2) prevented any further testing, treatment or diagnosis’, 2) failed to provide the appropriate testing to eliminate any other causes, and 3) failed to treat the condition of CPRS-II or spine damage or cysts.
In fact, when I think of how a wheelchair has been denied over and over, despite wheelchairs being issued commonly to RSD patients like myself who are no longer able to walk, the MRI’s we kept requesting and never got, when I think about how we were treated by the public agencies and these institutions who are supposed to protect and help patients, I am STUNNED THIS is CALLED HEALTH CARE.
First, I was injured, and experienced pain levels that were beyond anything – the highest levels of pain on the McGill Pain Scale – and TORTURED EMOTIONALLY, Refusing to help me in PM when I begged and cried in the UCSF Pain Management doctor office, begging them to please help me, the way they told me, laughing, ‘to buy some new shoes,’ and the way they lied, trumped-up mental health conditions, while telling myself and my dad, a psychiatrist, that this was ‘physical, not mental, but we don’t know what it is.’
I think of how on 2 occasions UCSF, instead of reporting the CRPS-II to SSDI, given the special designation of CPRS for people just like me who become disabled within weeks and can no longer work, UCSF lied and said I had a ‘sore back.’
We did not get benefits but instead lived on $561 dollars a month for two years, often, like now again, not having enough food or money for medicine and rent. My SSDI lawyer, despite telling her we were homeless, did not submit an SSI GA request for support, but instead said there was no provisions for someone like me, and never ever spoke to me before my hearing.
I lost good friends, colleagues, jobs while these prestigious medical institutions with SPECIALISTS IN RSD never even BOTHERED TO OFFER THEIR EXPERTISE to help me.
The experience I have been through these last 3 years has shattered many beliefs and faith I had in our country and the people. In the medical system, in doctors.
How much money did these doctors and institutions make from Medi-CARE and Medi-CAL while they lied and hid facts and information?
How much of my life, the life of my family did they take?
AND, WILL I BE ABLE TO GET ANY DOCTOR TO HELP ME?
WILL ANYONE HELP ME THAT WON’T BE AFRAID OF UCSF AND, NOW, STANFORD?
This past weekend, I came to terms with the fact that these doctors, these institutions were quite experienced at, and easily able to throw me under the bus, able to delay my care and testing for 3 years to protect themselves from liability.
It is what has motivated me to become a dedicated and serious advocate. I WILL BE SHARING MY STORY, and I WILL BE FIGHTING FOR PROTECTIONS;
A) To create a new system for patients who are INJURED at a hospital, to ensure a third-party is immediately interjected to PROTECT THE PATIENT AND MONITOR CARE OF THE PATIENT INJURED AT A HOSPITAL,
B) A COMPLETE CHANGE IN HOW RSD/CPRS PATIENTS ARE TREATED.
My case is extreme in the legal details since I was injured at UCSF, but, not rare in the lack of coordinated, careful and kind treatment.
I will be exploring what sort of Large Coordinated Effort RSD patients can undertake to ensure that officials and representatives have a CLEAR AND COMPLETE PICTURE OF WHAT IS HAPPENING TO RSD PATIENTS ACROSS THIS COUNTRY, MANY, MANY ARE NOT RECEIVING PROPER, APPROPRIATE AND CONDITION-SENSITIVE CARE..
Many are Veterans and Military who have RSD/CPRS from the line of duty. Many of these good people are now friends, and are inspiring as advocates themselves.
I WILL BE A FORCE FOR CHANGE.
I will add my voice to the chorus of RSD/CPRS patients demanding that CHANGE HAPPEN.
It’s simply unconscionable that because I was INJURED AND DISPOSED OF BY UCSF AND STANFORD, THAT I CAN NOT ACCESS ANY DOCTORS EVEN NOW.
What am I supposed to do?
In my next post, I will be announcing new changes to Letter of Courage – changes that will be in line with the goals described above.
I have sent out letters to Stanford, UCSF, San Francisco Health Plan, Nancy Pelosi, Marc Leno, the Department of Health Services ‘Disparities in Health,’ State of California, and the Civil Rights Division describing exactly what happened to me because many of these people/orgs have been informed since early on in the process.
Documentation of what I have shared here is available because I FOUGHT TO TRY TO GET THE ACCESS, TREATMENT AND COMPASSION I DESERVED, trying so very hard to be taken seriously, and to get equal access.
I will be sharing my story far and wide and making sure change comes to how RSD and CPRS is treated, how patients are treated.
In 2008, in November, one night as my child and I sat a dinner, me so very sick and trying so very hard to put on a good face for my child, to try with all my fiber to be myself like before the injury, I told my child that I knew there had to be a reason this awful experience was befalling me/us.
When I started Letters of Courage, it was to share my experience with RSD, to share how the condition impacted me as a patient, artist, a woman, and a mother.
I simply had NO IDEA what journey we were going to have to travel.
Well, now, I know that I will be using my skills and talent and intelligence to ENSURE THIS SORT OF TREATMENT NEVER HAPPENS TO ANYONE EVER AGAIN.
This entry was posted in Ancient Possibilities for Today, Letter of Courage Series Archive, Modern Medicine Movements, The Journey and tagged Alternative healing, Baltimore Sun Health Chat: CPRS and RSD, Complex Regional Pain Syndrome Severity Score (CSS), CPRS, CPRS Test to Assess Severity of Complex Regional Pain Syndrome, Dancing with Pain, Global CPRS Databank, Healing, healing herbs, http://www.eorthopod.com/content/a-new-test-to-assess-severity-of-complex-regional-pain-syndrome, Letters of Courage, Louise L. Hay, natural remedies, Neuro Orthopedic Institute, new tests for CPRS, Nicole Hemmenway, One of the biggest problems reported with CPRS is the difficult communication between patient and doctors, RSD, Solistice, Spirituality, Trauma Related Neuronal Dysfunction Consortium in The Netherlands.
Its been a while since I’ve written.
After my second appointment at Stanford, both myself and the woman who helps me, we both caught a horrible flu.
I haven’t had a flu-like that for a long time.
I haven’t written much either because not much else has happened.
I feel very fortunate to be meeting with the doctors at Stanford. It was such a relief to hear the doctor say immediately he knew what I had. When we were in the waiting room, we talked to a couple who had traveled from Bakersfield for their appointment. They told us in Spanish they drove the distance because the doctors at Stanford were the best in the world.
It’s a relief to meet with experts who know and understand RSD. I mean, I feel lucky to talk with them. They are on the cusp of this fight to find an answer for RSD.
I met with my GP. She recommended taking a semester off from SFAI so I can work with the pain specialists. Unfortunately, the SFAI program is a year-long, so that means I can’t go back until next September.
Not the news I had hoped for, yet, I had to open myself to seeing the positive side of focusing on getting completely better.
I went to the bank and store the other day, walking and rolling my cart was unbearably painful and I caught a cab home. I felt rather defeated.
When I go to the Stanford Pain Clinic, which is in the back of the wing, I can use one of the many wheelchairs, and avoid the painstakingly slow pace of walking.
I love how fast I can move and get myself around.
I hope that until I can get back on my feet, I can finally obtain a mobility device. I think a scooter, mobility, can really help in the meantime.
The insurance rejected the request for a wheelchair, several times. They said I wasn’t diagnosed so they couldn’t approve the chair.
Now, I am told, with Medicare, all I have to do is ask.
Well, I called and called, but the Medicare number kept disconnecting after a few rings.
So, is that the joke. All you have to do is ask, if, you can get through?
I liked the rush of air on my face when I was in the wheelchair, feeling my hair blowing in the breeze.
Until now, I didn’t realize how long its been since I’ve felt that sensation.
Tests and Records
My GP said that the neurologist had ordered more specialized blood tests, and that Stanford confirmed CRPS II. She also said they were concerned about a possible spinal issue.
That was a surprise.
I sent my records of EMGs and MRI’s so let’s see what Stanford can see from those tests.
Maybe Stanford will schedule new tests. Now, 2 years have passed since the last ones.
Wait and see.
In the meantime, I am starting to adjust a bit now to the change in my child being away for the first time. He’s at home now for the monthly break so I am happy to be with him. I had hoped in the month he’s been gone, I’d have more answers, and be further along in the treatment.
Its been over a month since I sent the first copy of my medical record from the first doctors I was seen during the first 3 years.
I get angry with the waiting.
I have a child to support.
I have a life I want to get back to, opportunities that are my dreams, a lifetime of working towards. I was interviewing for a documentary series when I was injured. I want to go back to my career.
Despite the doctors signing reports and notes, the social services continue every month to delay our benefits. Every month. I feel like I am being punished for needing the disability support. It compounds the sense of loss to not be able to work like before, do what I could before, and I feel badly to not provide.
I wonder, is this how other disabled people are treated each month too?
This week, I allowed myself to feel the frustration in not being physically well, particularly since, for the first time in over a decade, my single parenthood schedule is different enough so that I can consider returning to my career full-time.
I feel an urgency to have the testing and evaluation done so that treatment can finally happen.
Why is it so hard to get the results of tests that hospitals and doctors have access?
Spreading of RSD
Still, no one can tell me what’s wrong in my right leg. Still, the specialists say, RSD generally doesn’t travel.
So, what of the hundreds and hundreds of people with RSD in whom it spreads, is documented to have spread?
The whole issue of whether RSD can spread to another limb was the big question that held up treatment for an assessment of what else could be causing the leg issue. That’s been going on for 3 years.
Well, this conundrum I am told, is one of the many aspects of the RSD debate.
So, when I recently found this study, its findings helped clear up the debate for me.
The spreading of the RSD from my right arm to my right leg is not unheard of — in fact, this type of spreading is called ‘Ipsilateral,’ as opposed to ‘Contralateral,’ which the name implies, spreads from one limb to the limb on the other side.
Spreading of CRPS is not random, the study concluded.
In fact, I rarely read of when RSD doesn’t spread.
Why am I being told this kinda thing? Still?
The article published in February 2011 summarizes a study at the Department of Neurology of the Leiden University Medical Center of 185 patients.
Ispilateral spread occurs less frequently, but does tend to show up in younger patients, and may point to other genetic and immunological components still being studied.
As with all research, it’s always best to read the source article (link above) as I’ve only provided here a simple, non-medical summary. I read this article on what I have found so far to be one of the most dynamic of the research sites, T. Howard Blacks Definitive Link Library on RSD.
Why then the lack of testing with all that equipment to find out what is wrong in my leg if it’s not RSD?
The urgency of making a living for myself and my son makes this debate so esoteric as to feel rude. Especially while it’s so hard to even get those devices that can improve mobility. Three years have passed since I have walked without pain.
I had another dream. This time, I saw myself walking around a new neighborhood, and I remember looking at myself with happiness to see that I was not walking with the cane any longer.
Community Healing and Prayer
One of the nurses shared with me how much prayer had helped her daughter and asked if I had begun praying.
I have not written much here about that part of my healing journey. Maybe I should have written more, but, all the outcomes are what I share in my writing.
Prayer, no doubt, has been an element from the start. For those moments of horrific, mind-blowing pain, you can believe me, prayer is a huge part of making it through that type of pain.
I have been fortunate to have so many people praying for my recovery from CRPS, and, I have participated in group prayers for healing.
I have felt an improvement in my mood, and decrease in my sense of isolation.
I am inspired by so many with stories of healing, even, when all hope was lost.
Ever since I read there are cases of spontaneous healing of CRPS, I have set my sights on doing just that – healing.
Looking within – Art as Healer
At the same time, as my grandfather taught me – ‘when there is a problem, look inside first.’
It wasn’t easy because I was in so much physical pain, but, I also began to take a look at my own life and who I was as a person. My art during this time, captured in this video below, was part of my healing work.
Art was my refuge, a place to pour my feelings so I could move past the anger I felt about suddenly having a horrific pain and disability where the day before I had none. I know everyone with this condition understands that feeling.
The woman floating on the ocean, and the one at the end, where she is sitting on the banks by the ocean holding a shell above her head, were recently published in the program announcing the screening of my film.
I have so much in life I want to return. I am just grateful for the art I can do still.
I stopped drawing and painting after we became homeless. My supplies are in storage still, hoping soon I can leave this perch on the 3rd floor, to get to the ground so I might try to get out more often, and get my things out of storage. I’d like to start drawing and painting again.
When I was seen by the new doctors, I was told the pain in my arm and leg were separate, unconnected.
I had never thought of it.
So, I spent the last few weeks observing – is the pain connected?
I never found a time when my arm and leg pain was disconnected. In the morning when I wake, it’s there – sometimes less, sometimes more. Yet, always there, on both limbs.
My arm pain may be less in comparison to the leg when the pain spikes from walking, but, like last Sunday, when I screened my film at an event, all this week, my entire right side was in deep, deep pain for several days afterwards. All week, my ankle has that swollen ball from which the pain seems particularly worse.
If Venipuncture RSD is so rare, why do they keep trying to tell me what is happening in my body instead of asking me?
My dad will say that the pain switch that goes on with CRPS is triggered by stress so in a way, that pain and disability was always there, just latent, and the stress of my artistic, on-the-edge life is what eventually caused the CRPS.
Yet, a new study adds to a growing body of work that seeks to dispel – once and for all – the notion that CRPS is caused by emotional or psychological issues. The 2010 study published in Joint Bone Spine Journal (Vol. 78, pages 194-199) found that biopsychological complexity is not associated with perceived pain in CRPS type I. Although different from the CRPS II with nerve damage, I wonder if the study applies.
So, its back to that question – does the fact that I didn’t recover from the Venipuncture wound, vs. someone who does, mean that there is an emotional/stress factor that causes CRPS?
I don’t know the answer. When I offer to go to therapy 5x a week if it can make me walk, in three years, no one has taken me up on the offer.
Do I resent the debate being carried out on CRPS patients? Yep.
If the issue of who does or doesn’t experience pain is such an important debate, well, how about trying the study on cancer patients with neuropathic pain, or patients going for a root canal. Do a whole psychological work up to find out what might be making it possible for those, and not others, to feel the pain from their conditions.
And, make sure to deny that they should even feel that pain.
I mean really.
I read about this new innovative test for verifying pain. Like measuring heartbeat (yep, I’ve felt my heart speed up when extreme pain strikes. Like cutting my food the other night at dinner, when a sharp pain caused me to drop the fork and knife like hot coals), or, sweating with increased pain (check).
It occurs to me, there might be some simpler answers.
Why hasn’t one of these doctors, in three years, ever gone walking with me?
I mean, simply walk outside, around the block, observe what happens when I walk, where the pain is, and how it impacts my walking.
Not only do we do no walking, there is no actual exam of my leg or arm. No tests for weakness or damage to the bones.
I sit on a table for 15, maybe 15 minutes, sometimes an hour, that’s it. How are they going to know the pain when I am not using my leg and arm?
Excuse me, is there any other type of reporting?
I’ve never been asked to log my pain, or describe the symptoms over time, or to share how the symptoms change with weather.
How exactly do doctors find out about pain?
If there is a way, in 3 years since the Venipuncture RSD, I have not been shared those tests or methods.
Meanwhile, I continue to wait to hear about the results of scientific, medical procedures to know whether there is radial nerve damage still in my arm and leg, and whether there might be a spine issue.
CRPS vs. Neuropathic pain?
In 3 years, no one has been able to say whether its possible to have nerve pain and not have CRPS. I’ve asked, over and over.
I mean, if my nerve was injured, what makes it CRPS and not just plain painful nerve damage? These are questions no one answers because they say they don’t know why – why someone with spinal injuries can report no pain at all and why people with a simple nerve damage from a needle can have pain.
Well, in a study published in the European Journal of Neurology 2010, (vol. 17, pages 1010-1018,) carried out by a team of experts from various Pain and Neurology Clinics and University Departments from around Europe. The study sought to consider the guidelines for Neuropathic Pain Assessment, and the tools used to make NP diagnosis.
Interestingly, the study found that NP can often be confused with CRPS, with the study authors, in fact, finding that CRPS can sometimes be ‘overdiagnosed’ where possibly a Neuropathy or NP related condition is instead a proper diagnosis.
The study concludes by sharing which testing mechanisms the team assessed and found useful in diagnosing Neuropathic pain.
Again, please read the study yourself, or talk over with your doctors, to get a medical review of the article.
Reflection – A Mutual Benefit
I know others with CRPS can also understand how awful it can be to have someone pointing the finger at you when they themselves have no real answers either.
If we are asked as patients to dig into our personal lives to see how our actions could be cause for CRPS, why not the same of the medical system that treats the condition?
After my experience, I think these are valid questions.
As many times as I’ve been asked whether I filed a lawsuit, why has no doctor asked more about the pain, or done any testing?
Why can I still not get a factual answer about what the tests done up to now say?
And, if Venipuncture RSD is so rare, why am I spoken to like they have all the answers or know all about it?
I feel lucky to be able now to see the experts at Stanford, known for its innovative research.
I will meet with the experts next week.
HONEY – 20 amazing uses!
I’ve written before how Honey has been life-saving for me with the nausea that results when I exert myself physically. I’ve also written how using honey over the last year seems to have actually improved the nausea that came even when I was lying down, and got worse as the pain increased.
Well, here is a wonderful list of 20 uses for honey written by Anna Brones, travel and food writer, Marketing Manager for EcoSalon, published in the Huffington Post in celebration for Honey Month! Enjoy!
Superpowers and parasitic cleansing? Honey, who knew?
It was brought to my attention last week that September is in fact National Honey Month. Honey gets an entire month all to itself? Why yes, it certainly does.
Turns out that Americans consume 1.5 pounds of honey per person annually, and there are more than 300 types of honey in the United States alone. That’s impressive, and we figured that if honey gets to be honored all month long, the least we could do is give you 20 different uses for it. Enjoy!
1. Put it on your lips
Did you know that making your own lip balm is as easy as tracking down some almond oil, beeswax and honey? Sure is. Makes you feel a little guilty about that $10 version you picked up at the health food store yesterday, doesn’t it?
2. Make your own honey moisturizer
If you’ve got a handful of sweet smelling herbs — think lavender — laying around and ready to be used, why not use them for your own homemade honey lotion? Warm honey over a saucepan until it gets to a liquid consistency. Pour honey over herbs and cap tightly; the ratio you want to use is 1 tablespoon of herbs per 8 ounces of honey. Let sit for a week and then mix 1 teaspoon of liquid into an 8 ounce bottle of unscented lotion.
3. Eat it with goat cheese
In need of a classy hors d’oeuvre but lacking in the time department? Try this: put a round of goat cheese in a ramekin, sprinkle honey and chopped walnuts on top and place in oven at 350F until honey and cheese are both soft. Serve with baguette or crackers and you’ll be the life of the party.
4. Prepare for the end of the world
You never know what’s going to happen, so stock it. Now.
5. Drink it
We all know a drop of honey in tea is good for a sore throat, but you can add it to most drinks for an extra energy boost. And simply because it’s a whole lot better than tossing in a few Sweet ‘N Lows.
6. Make a salad
One of my favorite and easiest fruit salads uses just a touch of honey to enhance the sugars in the fruit, and it’s a perfect late summer dessert.
- 1 cantaloupe, chopped
- 3 nectarines, chopped
- 4 tablespoons chopped basil
- 2 tablespoons honey
Mix together and enjoy!
7. Give yourself a facial
Honey is a natural humectant with antimicrobial properties, which means your skin will be happy when you give it some sweet honey love. Try a basic honey wash by mixing a dollop of honey and two tablespoons of warm water and massaging the mixture into your skin. Or you can go all out and try the Cucumber Honey Facial.
8. Go the extra mile
Forget energy bars and shots, just pop a tablespoon of honey before your next workout. Seriously, it has been proven to boost athletic performance.
9. Remove parasites
Got a post-Southeast Asia backpacking trip bug that just won’t leave you alone? Mix up a good blend of honey, water and vinegar and you’ll quickly be on your way to being parasite free.
10. Clean your cuts and scrapes
Honey can actually be used as an antiseptic, like a natural Neosporin. Because of its many antimicrobial properties, it can be used to treat wounds and even burns.
11. Get rid of your hangover
Forget a morning of popping ibuprofen, spread some honey on your toast or add some to your tea. Because honey is loaded with fructose, it will help speed up the metabolism of alcohol.
12. Clear up your dry elbows
Nothing’s worse than scratchy elbows (no really) so next time, after you’ve washed and scrubbed, rub some honey on to soften the skin. Leave on for 30 minutes then wash off.
13. Soften your skin
Honey is an excellent exfoliant. You can pair it with ground almonds and lemon juice for a killer homemade facial scrub.
14. Mix a drink
After you’ve been busy reaping all the health benefits that honey has to offer, it’s time to celebrate, and what better way than with a good ole cocktail. Honey Gin Cocktail? Bring it.
15. Eat the honeycomb. No really, just do it.
Yes, it can be done! One of our fave food bloggers Clotilde Dusoulier, of Chocolate & Zucchini, put the ingredient to her readers and got some fun responses. The best sounding one? Mix it with crunchy peanut butter on toast.
16. Get an energy boost
Feeling a tad lethargic? Skip the coffee and go for the honey instead. Mix a tablespoon into a cup of tea and you’ll be feeling better in no time.
17. Beautify your hair
In the shower, after you wash your, coat the ends with a bit of honey. Let it sit for a few minutes before rinsing out and you’ll find that your hair is less frizzy and extra conditioned. Or make your hair shiny and bright by adding one teaspoon honey to one quart of water, and after washing your hair, pouring the mixture over your head. Let dry and enjoy your new-found shiny do.
18. Preserve fruit
Jam is so five years ago; show you’re truly cutting edge by preserving your fruits in a honey sauce. All it takes is one part honey to ten parts water and then covering your berries. Pretty much the closest you’re ever going to get to bottling up a little bit of summer.
19. Relax in the tub
Add a few tablespoons of honey to your bath, for sweeter smelling, softer feeling water. Pure bliss.
20. Lose weight
Well, what were you expecting? With a list this long it had to be pretty apparent that honey is in fact a wonder food, and as it turns out, you can even make it part of your next weight loss plan. Honey is an excellent substitute for sugar and it also helps speed up metabolism. Just remember: all things in moderation.
This entry was posted in Letter of Courage Series Archive, Modern Medicine Movements, 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, Global CPRS Databank, Healing, http://www.huffingtonpost.com/users/becomeFan.php?of=hp_blogger_Anna Broneshttp://www.huffingtonpost.com/author/index.php?author=anna-broneshttp://www.huffingtonpost.com/users/login/http://twitter.com, Letters of Courage, natural remedies, new tests for CPRS, RSD, Spirituality, Trauma Related Neuronal Dysfunction Consortium in The Netherlands.
Ok, yesterday, and last week, I was feeling pretty powerless. A friend called yesterday afternoon, my cheery disposition a surprise. She tried last week to help by referring me to two people who might be able to help me find access to a neurologist. My dear friend heard the panic and fear last week as I realized the specialist’ advice to get to a neurologist was not something I could compel the hospital to do, and frankly, how ridiculous to not have access to a neurologist and pain specialist anyway?
I was cheery because I put that stress in a space of time, allowed it out yesterday – and, then, I put it away.
I was able to sit up most of the day working with my leg in the right spot for the pain to not become overwhelming. Walking around the house, the pain was shooting in my foot. I stayed put. Luckily, now, I have in-home support so laundry was done and brought back up the 3 flights of stairs, and, she did a little grocery shopping so we had food to eat.
Nausea came, I ate honey. I drank Ginger tea. The tea is really starting to have an impact. It’s interesting that it takes time, it’s a gentle building up. Yesterday in the evening, I felt some tingling in the right side of my right leg, and it was noticeable. You can imagine I have started my morning today with Ginger.
I am also on a Live Chat with Dr. Christo from John Hopkins, who is answering questions about CPRS from readers. This chat feels like a blessing, to connect with a real live specialist. I have submitted several questions so I hope I can get a few answers today for things I did not know already, and maybe some of the answers can turn around this situation.
Anyway, I want to open up to hope and possibility by learning, finding out as much as I can about CPRS – If you want to catch the last half of the Chat you can visit at
I hope this brings you a little comfort today!
This entry was posted in Modern Medicine Movements and tagged Alternative healing, Baltimore Sun Health Chat: CPRS and RSD, Complex Regional Pain Syndrome Severity Score (CSS), CPRS, CPRS Databank, CPRS Test to Assess Severity of Complex Regional Pain Syndrome, Dr. Christo, Healing, Johns Hopkins, Letters of Courage, RSD.
No photos today. Getting ready for my first physical therapy in two years.
Starting the bath, soaking helps with the pain, and calms me. I want to aid myself as much as possible by being in a good space. To bring the strength and resolve I feel when I am not dealing with doctors, without bringing it. I am scared because my general physican said last that the hospital was pretty much off-limits to me. So, what can the PT do?
I want so badly to get better. I can feel myself walking again, and I want to make this a reality.
Apparently, this condition is meant to teach me patience. All the healers, doctors and not, who I visit to find healing, they all say, ‘its going to take a while.’
I do not expect an immediate solution today. All I pray for is real care, real concern, and real knowledge. I know that the doctors may not have answers, but, then tell me. I can be a partner in the discovery because no one wants healing more than myself.
I do share a bit of hope today. I found this week a doctor who is very knowledgeable about CPRS, and, in fact, she specializes in the condition and is up to date on the research. And, she accepts Medicare so in April, when I have it, I can consider going to get her evaluation. Several patients share their dramatic decrease in symptoms. I heard the word reversal, – poor doctor! I cried, could barely keep back the tears. To not have this condition any longer…wow….
Also, there is growing evidence that CPRS may be an issue of inflammation. I have gotten fresh organic ginger to make tea. Knowing that could be the cause, there are many ways to address inflammation with food, with teas. I need a nugget I can hold on to, to work with.
The PT is someone who can tell me more information, and share how to exercise to live the best possible life if I have this CPRS, if I can’t get healed…ifs…
I know I want the wow, but only time will tell…patience my dear girl, patience.
This entry was posted in Letter of Courage Series Archive, Modern Medicine Movements, 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, Healing, healing herbs, Letters of Courage, natural remedies, new tests for CPRS, RSD, Spirituality.
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.