hi new to this forum..i have rsd and i have been looking for actual research to treat injury instead of symptoms..the only thing i am finding is drugs drugs electrical stim and other voodoo garbage that "may" help with the pain...
ive called allot of organizations all thy really do is to give P.R. trying to raise awareness..well sorry aboutthe all for it is a great help. the AMA doesnt take this seriousely and they should. we need to finad a way to get on them to bring about real research to treat the injury.. also the reason I found this site is during my research i looked to the side of my screen and saw "can rsd cause death" i clicked on it and brought me to this thread. the people who were responding said no it doesnt "cause it " even though it might effect the heart or lungs or liver or brain etc the person actuall dies from heart attack. liver failure. lung failure etc. im sure you see where thy r going. so i rebut..with this . If your statement is true than people do not die of cancer but heart failure lung failure pancreas failure etc... listen i dont want to believe rsd kills but if it effects thre way critc;e body functions run and person was healthy before hand and then suffer death from said organs that were affected then yes rsd is the cause (no) people started taking cancer seriously becaus it is said to kill. wont it do the same for us.. when even though rare it can possibly do the same things as cancer?? oh and in case you didnt know the sympathetic nervuse system is primaraly atrubuted to work on major organs.. chk grey anatomy under sympathetic nervouse system. this is my thought on it . sorry had to voice.
back to what i said earlier i am researching this and trying to find actual doctors researching treating injury. we all deserve a life with out pain. and as a whole if we each search a little and share we can make a huge differencein how we are treated. i wishh you all great succes in you vetures to get better . god speed and good luck

Hi. Sorry to hear of your frustrations.

Please understand that there are a number of "treatments" that have put people into permanent remission [read: cure] if they are given during the acute stage of the disease, unfortunately, many people aren't given access to these treatments until later.

For the "gold standard treatment," check out, A unique presentation of complex regional pain syndrome type I treated with a continuous sciatic peripheral nerve block and parenteral ketamine infusion: a case report Everett A, Mclean B, Plunkett A, Buckenmaier C, Pain Med. 2009 Sep;10(6):1136-9, Epub 2009 Sep 9, ONLINE TEXT @ http://www.rsds.org/2/library/articl...n_Plunkett.pdf

For everyone else, you have to go the mechanism by which chronic CRPS is maintained, abnormal thalamocortical activity in the brain.

Please check out (1) a current thread on this page, Motor cortex electrical stimulation: a promising therapy when all else has failed http://neurotalk.psychcentral.com/thread145341.html and read the linked threads and articles, along with (2) an older one, RUL ECT as just maybe a cure for RSD (in perhaps 2 out of 3 patients) http://, http://neurotalk.psychcentr...read42529.html which has been put in a new context by Abnormal thalamocortical activity in patients with Complex Regional Pain Syndrome (CRPS) Type I, Walton KD, Dubois M, Llinás RR, Pain 2010 Jul; 150(1):41-51, Epub 2010 Mar 24, ONLINE TEXT @ http://www.rsds.org/2/library/articl..._Pain_2010.pdf, the lead-off article in the first thread. (In establishing chronic CRPS as a disease of Thalamo-cortical Dysrhythmia (TCD), it now joins the ranks of Depression and Parkinson's disease, among others.) See, generally, Thalamocortical dysrhythmia: A neurological and neuropsychiatric syndrome characterized by magnetoencephalography, Llinás RR, Ribary U, Jeanmonod D, Kronberg E, Mitra PP, Proc Natl Acad Sci U S A 1999 Dec 21;96(26):15222-7, ONLINE TEXT @ http://www.pnas.org/content/96/26/15222.full.pdf, an article such significance it received significant coverage in the New York Times when it was first presented, "New Way Of Looking At Diseases Of the Brain," October 29, 1999:

The neuroscientist, Dr. Rodolfo Llinas, a professor at New York University Medical School, presented his findings on Sunday night in Miami to some 4,000 researchers attending the annual Society for Neuroscience meeting.

Although the theory has not yet been subjected to peer review, a paper describing the work was submitted last week to Proceedings of the National Academy of Sciences and accepted for publication in just two days. Dr. Llinas is a member of the academy, which often publishes the work of leading scientists or their proteges when the ideas are new and have not yet been tested by others.

''This work is very important,'' said Dr. Edward Jones, president of the Society for Neuroscience and director of the Center for Neuroscience at the University of California in Davis. ''What makes it so compelling is that it doesn't come completely out of left field. It builds on a body of work that's been growing for some time. Everyone will say wow, yes!''

http://www.nytimes.com/1999/10/26/sc...%201999&st=cse

And to see the importance of this development, as applied to CTPS, you only compare the juxtaposition of The Natural History of Complex Regional Pain Syndrome, Schwartzman RJ, Erwin KL, Alexander GM, Clin J Pain 2009;25:273-280, ONLINE TEXT @ http://www.rsds.org/2/library/articl...lexanderGM.pdf (in a study of 656 patients who had had CRPS for one year or more, 33 of whom had been seen by the lead author for over 20 years, none of the patients in the study demonstrated spontaneous remission of their symptoms), with, a case report from the same department and corresponding author published prior to the article by Walton et al, Treatment of CRPS with ECT, Wolanin MW, Gulevski V, Schwartzman R, Pain Phys. 2007;10:573-578, ONLINE TEXT @ http://www.rsds.org/2/library/articl...chwartzman.pdf (a 42 year old former judge, who had left the bench due to CRPS - as confirmed by both physical examination and Quantitative Sensory Testing (QST) - that resisted all treatment, leaving her with, among other things, CRPS in all extremities, back, and face, osteopenia of the lumbar spine and both hips, as well as persistent gastroparesis, on account of which she eventually developed medically refractory depression, for which - 4 years into the CRPS - she received a series of 12 standard bitemporal electroconvulsive therapy (BL ECT) treatments, at which point ALL of her symptoms of depression and CRPS completely resolved - the latter finding confirmed by QST - and at the time of the publication of the case note, three years later, she remained completely free of both depression and CRPS and had returned to working fulltime as an attorney), an an article in which the authors dutifully noted that the "mechanism of action of ECT is still unknown."

Based upon their discussion of the effects of the delivery of electrical stimulation to the brain, but specifically through a relatively high risk treatment using the surgical placements of electrodes deep within the brain, Deep Brain Stimulation (DBS), Walton et al, may have likely filled in that blank.

However, where it also appears that the pain scientists may not have been following the neurophysiology (EEG) literature over the last decade - until the article by Walton el al was published in Pain last spring - a point made in the commentary to that article, Thalamocortical dysrhythmia and chronic pain, Jones EG, Pain 2010 Jul;150(1):4-5, Epub 2010 Apr 14, ONLINE TEXT @ http://www.rsds.org/2/library/articl..._Pain_2010.pdf, it's fair to say that the initial wave from the impact of this article has yet to reach the shore.

I hope this is useful.

Mike

Bumping to note the addition of some significant material to my last, as well as a clean-up to hopefully make it more readable.

Great, Great study. Thanks for all the efforts.

The aggressive way she was treated and so early on and the technology they used is the way it should always be done and many more sufferers would get relieve.

I'm going to print it. If you don't mind me asking, where do the articale's you post come from? I would love to have access.

Thanks again,

Gabbycakes

Thanks for those studies. I hope in time when more is known about the condition there will be better results in pain control. I think such a hard part of this is we all respond different to treatment. That is why the 1 size fits all treatment I think is not good. Even if there is not a cure I too have heard of treatments giving people a better quality of life and pain control. It is about finding the right treatment though and it takes time and trial and error. That is the hard and scary part.
F micheal on a side note I give you a lot of credit and thanks with all the research you do. You should write a book.

Painman2009, I felt the same way. i was really angry. My pain Dr, anesthesiologist told me that the best remission is if it is caught early on because once the RSD changes the brain/sympathetic response its too late for complete remission. He told me that even if they come up with a cure, it would not help me because mine is chronic. My husband doesnt buy it. Now he believes that warm pool water or desensatizing will help with skin sensativity and movement by helping rechange the sympathetic nervous system back to the way it was. Which i have found has really helped me. And research with biofeedback and relaxation helps keep the sympathetic nervous system going crazy. I find it hard to believe that, at least in Pa, although RSD is a diagnosis and there is physical symptoms that it is not recognized by SSD. I guess to have current Research and be recognized by SSD we have to come together, like RSDS.org(think thats it) , and unite as a large group.
momof4

Wow This thread has really hit my last nerve. I agree totally with the initial post and thank all of you for your great responses. I could go on endlessly with my thoughts, but will only say that I will fight this Monster-Help others afflicted via my Support Group-raise as much money as I can to raise awereness and for research and remain upset EVERY day at the ignorance of this disease. I agree and wish that I could find a way for ALL of us and all RSD orginazations to band together and unite someway to get the help that we all deserve!!!! I will stop for now-Fondly-Carol

fmichael - Sincere thanks for the time you take to round up all of the latest articles and research and share them with us all. I don't know where you find them but it's so promising to see that there really is a lot of research continuing to be done and that we do have something to hope for.

Thank you very much. I just want to make sure you know your posts never fall on deaf ears.

Dawn

I believe all the theoretical knowledge and technical components exist to build a nerve imaging machine which would be of extreme importance in numerous diseases and could be used to prevent RSD in virtually all cases. It would be of no or very limited usage for treatment of RSD probably but at least it would spell the end of suffering for millions in the future.

It does seem there should be a way to break the cycle of pain and I believe most of the research is actually going into learning the nature of pain so it can be comtrolled directly. Frankly I'm not convinced this will prove to be the correct tack. Pain may prove too amorphous and too widespread in the brain and body to be readily attacked directly in most instances.

There is likely to be a cure someday and it might be much sooner if they put more research directly toward solving this specific problem.