Hi Everyone,

From what I heard they changed the name because of the spread.

So you get the DX of RSd or CRPS which I have had a least 40 MD's in agreement with it. When I got DX with this my husband flipped and made me several MD's appointments. He has Docs in his family.

But what is the root of the problem? If they don't know the root how can you get proper treatment, of any kind.
Love, Roz

Buckwheat,

From what I know of this, they changed the name to reflect the fact that nobody really has a clue what causes this stupid disease. The name "reflex sympathetic dystrophy" assumes a cause---dysfunction of the sympathetic nervous system. While that most likely plays a role in the underlying pathophysiology of the disease, it's irresponsible to assume that it's the direct cause when doctors now suspect that there are more factors at play.

As for how they can treat without knowing the cause, the answer is pretty simple: trial and error. The truth is that the cause of most diseases are unknown. The only diseases that doctors can really claim to understand are infectious diseases, and even then the workings of the immune system can be a bit of a mystery. Nobody knows what really causes things like cancer or heart disease either...it's the same as with RSD. Why does one person get it and not another? The answer is too complex to fully understand right now---a combination of genetic and environmental factors are likely, but so little is still known about genetics!

I've had lots of interesting discussions on this with doctors. One doctor in particular discussed it with me ad nauseum. It was one of my grandpa's favorite rants...about how medicine had advanced so far since his days in medical school, yet the understanding of disease had remained essentially the same for those 50 years.

-Betsy

i love love love your answer .... no one knows! that is it!!!! and treat what comes with whatever works ... and it may or may not spread! more honest words were never written!! joan

Bill use to get frustrated and ask why Drs. weren't able to help me.

I just don't think RSD is being researched enough. It's way back on the back burner due to other medical issues such as cancer, Alszemiers, MS, and so on.

I saw in that article that Lisa said RSD is rare. I don't believe it is all that rare. There are too many people popping up on here everyday that has.

The root of the problem is that if they found a cure for the RSD and all of the others above then the Government couldn't rip off people and keep them down. The Pharmaceutical companies wouldn't be getting rich off of us, the Drs. wouldn't either. If they ever found a cure for any of these serious illnesses, it sure wouldn't be put out there for the world to see.

I hope you are feeling somewhat better these days.

Betsy is right, it is trial and error. When I first got it, I swear I would have been a guienna pig for any Dr. out there. I even ask my Dr. and PCP to find some test being done and stick me in them. If they hadn't said no, I wouldn't have cared what anyone done to me. I did have a lot more going on with it also. The TOS is a hard one for people to go through also.

I was wondering, how does anyone find out what research is being done on RSD today.

Ada

Joan, thanks. It's always nice to be agreed with!

Ada, I agree that research is important. We certainly need more of it, and more monetary resources as well! Unfortunately, the point I attempted to make was that nothing is really known about ANY disease. RSD is no different in that respect. There is little to no concrete knowledge about the actual mechanisms of just about every non-infectious disease known to man.

I personally think that the key lies in further genetic research. The problem with RSD (and many other disorders, again excepting infectious diseases and also confirmed genetic disorders that can be pinpointed to an actual chromosome) is that because we have no concrete pathophysiological knowledge, this syndrome is most likely caused by different processes in different people. Because of that, any research into treatment is likely to have the same effect as always---some respond, some don't.

Of course, more research into treatment is always a good thing. The more possible treatments that are found, the more likely that more people will be helped. The issue is that until they've identified the direct causes of RSD (and, as I said, there will be more than one), there will not be treatment available to help everybody. It will be a trial-and-error process until doctors can test for and pinpoint a specific problem.

It all sounds kind of frustrating (it is) and depressing. However, there IS research going on. The RSDSA sponsors some, and along with RSDHope is financing research into mitochondrial DNA in RSD patients. Also, the International Research Foundation for RSD (founded by doctors who have been on the RSDSA's advisory board) funds research. I've also read many announcements for clinical trials, which may turn out to help some people.

The problem is that RSD is complex (hence the name "complex regional pain syndrome"), and research takes time. Plus, it's entirely possible that we're not technologically advanced enough yet to figure this out. I have to believe that we're getting somewhere though!

For instance, when I first got RSD in 1994, it was the norm for people to go years without a diagnosis. Now, most people (but unfortunately not all) only seem to go a few months. That's still not acceptable, but it's better. Also, back in the day, there were many more doctors who were convinced that RSD was a psychological problem. Now, Dr. Oaklander's research has disproved that, and there are many more doctors who have learned about this disease.

Again, it's still not a good situation, but it's slowly improving. I only hope it continues to do so, and I believe it will.

-Betsy

I wrote this and rec'd the reply....the links were usless. Note:it is suposedly a "research " branch??? It took me in a circle that led nowhere....
At least I tried I guess! *scratchin' head*

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From: Jan
Sent: June 27, 2007 3:39 AM
To: support@researchnet-recherchenet.ca
Subject: research?

Is there, in Canada, any research done for RSD-reflex sympathetic dystrophy, or, also called CRPS- chronic regional pain syndrome ?

And if there isn't, WHY?

I have the disease, live in Alberta, and so many Canadian doctors don't know about this disease.

We can't get treated properly by our doctors is they don't know about it!

How do we get the medical government to do research on this disease?

Thank you for your time.

Jan
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Dear Jan

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Well, I think that the REAL "root" of the problem getting properly diagnosed and treated lies squarely at the feet of the INSURANCE companies, who KNOW that a diagnosis of RSD/CRPS is COSTLY. Unfortunately, there are some doctors who blythely accept the "new diagnostic criteria" as specified in the AMA 5th, others who are just plain IGNORANT of RSD in the first place, and OTHER doctors, who fortunately KNOW that this is a REAL MEDICAL problem, REFUSE to accept the "new diagnostic criteria", staunchly fight for appropriate available treatment, and support research efforts on behalf of their patients so that effective treatment, and possibly a cure, can be acheived.

Here is a very interesting article on the Insurance Company's involvement when it concerns diagnosing RSD...Special Report:

American Medical Association is Injuring Patients with RSD
Scientific Advisory Committee for the International Research Foundation for RSD/CRPS
Anthony F. Kirkpatrick, M.D., Ph.D., Chairman
Charles Berde, M.D., PhD. • Timothy Lubenow, M.D. • Wen-hsien Wu, M.D., M.S.

Robert Jay Schwartzman, M.D. • Srinivasa Raja, M.D. • Gustavo C. Roman, M.D.

Sabine Kost-Byerly, M.D. • Adam L. Seidner, M.D., M.P.H • Peter Wilson, M.D.

Ralph-Thomas Kiefer, M.D. • Peter Rohr, M.D. • Stephen M. Butler, M.D.

Takashi Mashimo, M.D., D.M.Sc. • Edward Covington, M.D.

The affiliations of committee members are listed at:
http://www.rsdfoundation.org/en/en_sac.html



A life and death battle has been waged against the largest private physician organization in the United States. The American Medical Association (AMA) is currently under fire for what experts are calling a reckless assault on patient care.
THE COMPLAINT
On May 14, 2003, Dr. Anthony Kirkpatrick, a member of the AMA and Chairman of the Scientific Advisory Committee of the International Research Foundation for RSD/CRPS, filed a complaint with the AMA putting the AMA on notice that it was causing ongoing injury to patients by disseminating false and misleading information about the diagnosis of reflex sympathetic dystrophy (RSD) also referred to as complex regional pain syndrome (CRPS Type I).

The original complaint was sent to Barry Bowlus, AMA's Senior Acquisitions Editor and then to the highest levels within the AMA, including the President. 1 Kirkpatrick wrote: "The false assertions by the AMA are particularly egregious because RSD/CRPS is a syndrome that must be treated in a timely manner in order to avert exacerbation of symptoms leading to irreversible impairment and suffering. I have personally witnessed patients with RSD/CRPS lose hope and commit suicide following denial of authorization for care by insurance carriers."

There are an estimated 1.5 million Americans who have been affected by this chronic, neurological syndrome. The syndrome can start after minor trauma, such as one caused by a sprained finger, or by a gunshot wound. But it can also be triggered by a heart attack, a stroke, surgery or repetitive vibration motion — such as the kind that comes from a jackhammer or weed-cutting tool. While the cause of the disorder remains unknown, experts believe it is the result of a malfunction or misfiring in the body's sympathetic nervous system, the part of the nervous system that regulates involuntary reactions to stress. The injury heals but the pain continues.

As RSD progresses over time, especially without treatment, the syndrome tends to become more unresponsive to treatment. Hence, early diagnosis and treatment are imperative. RSD can remain localized to one region of the body indefinitely. In other cases, it spreads to large segments of the body spontaneously or by trauma leading to permanent deformities and widespread immobility of limbs. At an advanced stage of the illness, all patients develop significant psychiatric problems and narcotic dependency, and are left completely incapacitated. Some commit suicide.

The critical issue raised by Kirkpatrick is contained in the AMA GUIDES TO THE EVALUATION OF PERMANENT IMPAIRMENT, 5th Edition. On page 496, the clinical guidelines state that there "must" be at least eight (8) concurrent, objective signs for RSD in order to make the diagnosis.2 The AMA clinical guidelines refer to objective diagnostic criteria such as changes in skin temperature, color, sweating, swelling, etc. Kirkpatrick informed the AMA, "...nowhere in the scientific literature will you find such stringent criteria for the diagnosis of RSD/CRPS."
Dr. Timothy Lubenow, Professor of Anesthesiology and Director of the Pain Center at Rush University Medical Center, Chicago emphasizes, "I have diagnosed and treated hundreds of patients with RSD and can not recall a single case where a patient had eight concurrent objective findings for RSD."
Despite numerous attempts by Kirkpatrick to obtain a response to his complaint, none was forthcoming from the AMA until he wrote to Dr. Michael Maves, Executive VP and CEO of the AMA. In his letter of June 25, 2004, Kirkpatrick requested that Maves publish a prompt retraction of the clinical guidelines. 1. Rather than publish a retraction, Maves instead directed Kirkpatrick to a neurology chapter in the same volume, where he claimed different, less stringent diagnostic criteria for RSD could be found . 3, 4 He suggested the neurology approach allows for "greater flexibility to the diagnostic criteria..." for RSD.

Thus, according to Maves, the AMA believes that it is acceptable to publish stringent diagnostic criteria for RSD in one chapter and contradict those stringent criteria in another chapter within the same text. Furthermore, contrary to what he stated, the neurology chapter does not contain any criteria to make the diagnosis of RSD. The chapter focuses instead on case reports intended to assist the physician in determining physical impairments in patients that have been diagnosed with RSD.

HUMAN CONSEQUENCES

Diagnostic information published by the AMA must be unbiased, scientific, evidence-based, and peer-reviewed. Yet, when confronted with its error, the AMA refuses to set the record straight and stand accountable before the public.

The harm caused by the AMA's error has been devastating to patients with RSD. Raymond Hale, a school teacher, was denied insurance authorization for treatment of RSD of his lower extremity. The specific basis for the treatment denial was not disclosed to the patient by the insurance carrier. However, through his own painstaking investigation, he found a document showing that a physician employed by his insurance company used the AMA's stringent, but incorrect, diagnostic criteria for RSD to deny authorization for treatment and he was accused of "faking" his injuries. Hale watched his symptoms worsen as he appealed the decision.Kirkpatrick states, "Many of my RSD patients are not told by their insurance company that the AMA guidelines are being used to deny their authorization for treatment and, therefore, they have no way to defend themselves against an attack on their health by the AMA."
Seventeen-year-old Sarah Young's battle with RSD began when she was hit with a softball. She says, "I went to therapy and it kind of made me feel like I was kinda crazy but, I knew I wasn't, but I was like really suicidal." Sarah's mother is livid about the AMA's conduct. "Sarah had only two objective findings to support the diagnosis of RSD. If we would have waited until all eight objective findings were found before reaching a diagnosis of RSD, as published by the AMA, we would have lost a very special young lady and that to me is unthinkable. The fact that these people with the AMA are willing to prolong pain and suffering for these children and parents is deplorable. If a parent was to withhold medical care from their child then they would be charged with a crime; where is the difference?"

Americans from all walks of life fall victim to this health care nightmare created by the AMA, including physicians. Lori Eley, R.N., recently wrote: "... my husband, Dr. John Eley, was a prominent Board Certified Family Medicine Physician who was injured and is now suffering this horrible disease RSD/CRPS, which, for the past 5 years, has left him unable to practice medicine. As a physician, he is appalled by the AMA..., knowing full well what he experiences from minute to minute, day by day, are not 8 specific symptoms occurring all at one time."

Recent decisions by the US Supreme Court, which have the effect of restricting lawsuits against HMOs for acts of negligence, are making things a lot tougher for patients who have to deal with third party payers. "The last thing patients need now is incorrect and seemingly bogus clinical guidelines published by the AMA that are so restrictive that they prevent the diagnosis and treatment of a potentially catastrophic and lethal illness," Lubenow said.The written complaint was delivered to the AMA on May 14, 2003, and again more recently was furnished to the President of the AMA as well as to the Editor-in-Chief of the Journal of the American Medical Association. Despite the fact that these top officials are on notice that the AMA's error is causing ongoing injury to patients, they are not willing to make the commitment to publicly and quickly set the record straight.

Deborah M. Shanley
Executive Director
International Research Foundation for RSD/CRPS



EDITOR'S NOTE:

On October 28, 2004, I received a second letter from Dr. Michael Maves. 5 Rather than offering to publish a retraction of the erroneous AMA clinical Guides for RSD in one of AMA's numerous publications, he states, "The AMA rejects your assertion that the Guides contain false or misleading information about the diagnosis of.. (RSD)..." He invited me, however, to provide input into a future committee at some unspecified time to write the 6th edition of the Guides. I am not one to be pacified by such an offer in exchange for keeping a lid on the injuries to patients being caused by the AMA.

This organization once represented more than two-thirds of American doctors but soon will represent less than one-third. Despite the AMA's involvement in the Sunbeam scandal (an uncritical proposed endorsement of medical products under the leadership of Dr. John Seward) and the real estate scandal (under the leadership of Dr. James Sammons), I continued my membership in the AMA. However, the AMA's recent attack on the health of patients with RSD is the last straw. I have resigned my membership from the organization. I would urge all physicians who still cling to their AMA membership to do the same.Anthony F. Kirkpatrick, M.D., Ph.D.



REFERENCES
Complete copies of the following supporting documents are available by clicking on the superscript number in the text or by clicking on the reference cited below.


June 25, 2004: Dr. Kirkpatrick filed complaint with AMA (click for reference)
AMA GUIDES TO THE EVALUATION OF PERMANENT IMPAIRMENT, 5th Edition, pp 495-97 (click for reference)
July 9, 2004: Letter from Dr. Maves to Dr. Kirkpatrick (click for reference)
Neurology Chapter, AMA GUIDES TO THE EVALUATION OF PERMANENT IMPAIRMENT, 5th Edition, pp 343-44 (click for reference)
October 28 , 2004: Letter from Dr. Maves to Dr. Kirkpatrick (click for reference)

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The International Research Foundation for RSD / CRPS is a
501(c)(3) (not-for-profit) organization in the United States of America.
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I added the "bold" for emphasis.

Hope this helps people understand that while RSD IS difficult to diagnosis and treat, the enusuing "controversy" concerning the DIAGNSOTIC CRITERIA have been CREATED by the Insurance companies, and are POLITCALLY-DRIVEN.

If ANYONE has been told by a Doctor that they do NOT have RSD, or have been DENIED treatment, then maybe we should be more pro-active and ask WHAT diagnostic criteria are being used...the AMA 5th's (8 concurrent symptoms), or the SCIENTIFICALLY PROVEN AND ACCEPTED criteria according to the "Clinical Guidelines" specified by RSDA and other PEER REVIEWED publications ( 4 symptoms, at "some point in time).

Respectfully,

great post brokenwing ... and so true. joan

As far as I know, I thought that the change was because some doctors did not agree that the sympathetic nervous system played a role in RSD/ CRPS. I am hesitant to agree with that, as I see the SNS playing a role in my RSD/ CRPS as well as the autonomic nervous system playing a role in it, after having it for so long.

HTH!

Thanks, Bets, for your posts. You said some of the exact same things I would've said... so I am not going to repost stuff, I'll leave it at this.

This disease should be 100% treatable if it were taken more seriously early on. I've been told I'm wrong about being able to image nerves by means of sensitive magnets to detect their electrical output but remain entirely unconvinced. Today's superconducting magnets should have plenty of field strenght for this. This would allow for immediate treatment since the body part remains in shock after first aid. Imaging the nerves should be part of first aid and a block or anestetic available for relief.

Even failing a high-tech answer, why do they simply dismiss patients' pain? If a person is still complaining of pain weeks after an injury, why not do a block? This would be better than condemning large numbers of people to a life which often seems like hell on Earth. Such outcomes are not only devastating to the individual but to society and to the families of these people.

It seems most doctors missed the day in med school when they taught about RSD.