Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 09-07-2012, 10:14 AM #11
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Quote:
Originally Posted by Kevscar View Post
I'll try and find it but with approx 120 links in my RSd favourites folder and 364 articles papers and letters in my RSD documents folder it could take sometime, if I remeber correctly it came from Howard. http://www.thblack.com/links/RSD/index.html
meantime here is one artocle on SCS's

http://www.rsdinfo.org/CRPS-SCS%20Article.pdf
Do you have any new studies or references? The rsdinfo.org article's references are so old. Just wondered if there was anything new.
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Old 09-07-2012, 09:42 PM #12
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Like I said it could take sometime but if you use the first link and sign up for the newsletter Howard lists new articles in it each month.
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Old 09-07-2012, 11:21 PM #13
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Like I said it could take sometime but if you use the first link and sign up for the newsletter Howard lists new articles in it each month.
The thing is, this is the first I've ever heard any claim of any such study, and I've discussed the lack there of with three quite knowledgeable RSD docs. And there certainly have been some very vocal anti SCS for RSD posters that have done lots of research and remarked on the fact that the percentages are not known. Thus, the surprise at your claim...
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Old 09-08-2012, 04:33 AM #14
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And I'll bet if you tell them that 7 - 8% of us may get wounds that never heal they won't know that either and I am one of them, certainly none of the 7 UK specialists have but then they didn't know that the first use of pre-emptive analgesis when operating on RSD sufferers was published in 2000.

http://www.rsds.org/1/publications/r...2008Spring.pdf
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Old 09-08-2012, 04:18 PM #15
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And I'll bet if you tell them that 7 - 8% of us may get wounds that never heal they won't know that either and I am one of them, certainly none of the 7 UK specialists have but then they didn't know that the first use of pre-emptive analgesis when operating on RSD sufferers was published in 2000.

http://www.rsds.org/1/publications/r...2008Spring.pdf
I'm not claiming SCS doesn't cause spread. It's the reason I haven't opted for it. But, that isn't the point. And the parameters of a research study could greatly impact the results. So, if one has been done including RSD and SCS causing spread, it would be something I'd certainly be interested in reading. If there was an informal poll done at someone's website, those numbers are essentially meaningless. Those that have had the best results will move on with their lives and not be active on websites about RSD.
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Old 09-09-2012, 01:09 AM #16
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From my own reading I would have put it at about 50% but as I said even some of those still say they are better off than before, it's not in my papers so I'll start on the links but it's quite possible I didn't or forgot to link or download it but I am certain it was a medical study.
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Old 09-14-2012, 02:30 PM #17
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Thanks for all the input. Y'all have made some valid points and given somethings I hadn't found in my research or Dr. informing of or thought of myself. I'll continue to keep researching. I do only take studies and research with a grain of salt as unfortunately many are manipulated for whatever or whoever the study is done for. That's why I like talking to people who are in simular situations and have gone thru the procedure or other things. I hope to be around more and become part of this wonderful community. Its nice to talk with others who have the same struggles and understand.

I do have a PM doctor for the past year since I moved back to OR. I had 2 in CA. the first wasn't that great and was about drugging you out to the point you were oblivious to anything around you and have 4 months of no memories other than what i wrote in my journal, and he died earlier this year at the young age of 34! My 2nd one was just simple med treatment which my current PM has continued w/trying the different blocks. But I do always get 2nd and 3rd opinions since my incident regardless of any medical advice. Even with my recent hysterectomy I had seen 2 other Dr. for their opinions. Thankfully all went well and that pain is gone!

I am on Cymbalta, Methodone, Diazapan, Wellbutrion, and Vitamin D. I've had different blocks and they work for awhile. the best one that worked was the radio frequency one and unfortunately like I said my insurance paid for it once then denied me and have gotten the run around from them even to get an advocate. So this is my next option of consideration besides the coma induced treatment. I just had surgery for a hysterectomy and what ever meds they used took alot of pain away for me for 2 weeks. I know there is no cure other than the miracle of spontaneous healing. I am in Physical & occupational Therapy which mostly is done in the pool to help relivate the stress of muscles. My PT in CA was just for desensitation which never worked and they told me don't use the arm but use it to keep joints moving but not for doing normal things. My current PT/OT was appalled and has gotten me to a good point but i was reluctant or just stubborn not to use my arm which helped me in the long run. In anycase, I do want to get off the methodone and diazapan mostly as I've been on it for 3 yrs going on 4 and am already seeing damage to my liver and kidneys and my primary is concerned. Eventually, I hope to be off the cymbalta and wellbutrion for anxiety and depression too cause thats going on for 5 yrs going on 6.

Anyways, thanks again for taking the time to give me your input, it is all welcome and very helpful. I guess, its time to discuss with hubby and then make an appt. to discuss more with my PM Dr. about doing trying the trial at least and go from there.
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Old 09-14-2012, 11:52 PM #18
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I don't know if this will help you get off your meds but you have nothing to lose by trying.

http://www.openfocustraining.co.uk/exercise.html
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