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 06-17-2010, 02:28 AM #1
hope4thebest hope4thebest is offline
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Question What is the difference between Sympathetic maintained pain and SIP

I have tried to get a diagnosis form 4 doctors to guide me as to whether my RSD is sympathetic maintained pain or sympathetic independent pain...No answer yet!
I know that if it is sympathetically maintained that the pain is due to the involvement of the sympathetic nerve..
If it is sympathetically independent pain, does that mean the sympathetic nerve is NOT involved at all and the sympathetic blocks are a waste of time?
Is it 'better' to be SMP or SIP??
Is the RSD beyond help if it is sympathetically independent? Does this mean it is stuck in a permanently short-circuited pattern and in the central nervous system and brain? OMG..
How are the two distinguished and diagnosed..
Blocks simply don't help anymore!
Thanks for any info! I am up waaay too late again
I hope your nite was comfortable and restful
Hugs from Hope4thebest xoxox
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Old 06-17-2010, 03:34 AM #2
AintSoBad AintSoBad is offline
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Great Question, Hope!
You might find your best answer at www.rsdsa.org
And, if you can't find it, ask Jim Broatch there.

I remember, (this is an old story, since I started in '83) being at first diagnosed with SMP. Until Dr S. Did some tests, and it turned to SIP. ( ya know, it's tuff to remember?)
What I'm saying, is that I 'think' it's a matter of some sort of testing, to diagnose correctly, but, also, it doesn't matter a whole heckofalot! Pain, is pain! Yea?

Another thing it shows, is that your docs may not be the very best, if you need testimony. Only if.

I've always known by Dr S that blocks are a waste of time except for Diagnostic purposes. They ARE NOT a Treatment! Only to help diagnose!
AS for is it 'stuck' in the short circuited pattern, Personally, I believe so, either way. I'm so sorry, but, pain is pain. There is no cure for this bastar um, bad thing.

I so wish I could say different, maybe one of your doctors will? They can make SO MUCH $$ trying to treat us, when really, being conservative, imho, is best. We've a long life to live, yes? And, we cannot be throwing all sorts of experimental cra/stuff at it! I've been that guinea piglet for a long time. Nothing helped. Most things hurt.

You must take your time, I know it's difficult. Live a slower life, and help your doctor, help you! Keep trying! Use a Journal, to help you to figure out just what it is that helps you feel better, yea?
This is a disorder where you'll find that every 'Little thing' helps, and there is no such thing, as a Silver Bullet.

So, pet the dog, and give kitty some milk. Looky at the birds outside! Check their flight patterns, and try to ignore the ants!

It can all become a matter of perspective. So, keep your chin up, and your mind on low.
Don't over think this thing.
It won't help so much..

Wishin' you only the best!

Pete
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Old 06-17-2010, 08:52 AM #3
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Quote:
Originally Posted by hope4thebest View Post
I have tried to get a diagnosis form 4 doctors to guide me as to whether my RSD is sympathetic maintained pain or sympathetic independent pain...No answer yet!
I know that if it is sympathetically maintained that the pain is due to the involvement of the sympathetic nerve..
If it is sympathetically independent pain, does that mean the sympathetic nerve is NOT involved at all and the sympathetic blocks are a waste of time?
Is it 'better' to be SMP or SIP??
Is the RSD beyond help if it is sympathetically independent? Does this mean it is stuck in a permanently short-circuited pattern and in the central nervous system and brain? OMG..
How are the two distinguished and diagnosed..
Blocks simply don't help anymore!
Thanks for any info! I am up waaay too late again
I hope your nite was comfortable and restful
Hugs from Hope4thebest xoxox
In SMP pain, there is a relationship between the sympathetic nervous system and pain. SMP is more likely to respond to sympathetic blocks than SIP and some believe that the reponse/non response to the blocks helps define the difference. It has also be stated that, generally, the SMP variety over time tends to become SIP much as there is a trend that "hot" RSD tends to become "cold" RSD over time as well.
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Old 06-19-2010, 10:03 PM #4
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The other big difference is that SMP is associated with a lot of cytokines and neuroinflamation, and so responds to all sorts of things, like regional blocks with Remicade. See, Successful Intravenous Regional Block with Low-Dose Tumor Necrosis Factor-[Alpha] Antibody Infliximab for Treatment of Complex Regional Pain Syndrome 1, Int Anesth Res Soc. 2007;105(4):1148-1151 FREE FULL TEXT @
http://www.rsds.org/2/library/articl...teck_Rolke.pdf

Whereas, by the time the pain is SIP, it's literally in your head and is apparently maintained by the abnormal thalamocortical occillations it set up in the first place! See, generally, Abnormal thalamocortical activity in patients with Complex Regional Pain Syndrome (CRPS) Type I, Walton KD, Dubois M, Llinas RR, Pain 2010 FREE FULL TEXT @ http://www.rsds.org/2/library/articl..._Pain_2010.pdf Hence, at that stage, the only chance lies in "resetting" the brain itself.

Forgive the lack of complete citations, but the list would go on for pages. Suffice to say that it's well established that there is far less evidence of activity - beyond the involvement of a single neuropeptide calcitonin gene-related peptide (CGRP) - in the immunological arena at the chronic stage, whereas that's the name of the game at the start. (Okay, citations available upon request.)

Mike

PS [REVISED] The whole distiction between SMP/SIP may be an historical anacronism. The bug got called RSD when people saw the clear involvment of the sympathetic nervous system, most notabily in the dysregulation of the "tone" of blood vessels, wheich are known to be filled with nerve ("innervated") and controlled by the sympathetic nervous system: typically, we experience vasocontriction in most of the small blood vessels, with compensatory vasodilation (resulting in edema) in others. Then, once they were focussed on the sympathetic nervous system, some bright lights had the idea of doing surgical sympathectomies and ablations, which gave at most a year or two, after shredding, cutting or burning away all control of the SNS over the affected area of the body . . . and lo and behold, they worked! Only to see the pain return as it became "sympathetically independant."

Later, the same rational was used to explain why things like lumbar sympathetic blocks stopped working over time. The only thing they missed was one minor detail: the blocks worked during the presence of neuroinflammation (as confirmed by cytokine panels) and stopped working once the inflammatory processes were largely at an end. That said, I've got to go back and re-read the old studies on sugical sypathectomies and the like, where a haunting voice is telling me they may have lasted a little longer than the point at which people stopped becoming responsive to the blocks, in which case it remains possible that they did more than simply interrupt a neuroinflammatory resonse: or perhaps simply did so more authoritartively than the blocks.

In any event - and possibly because of the ambiguious timing on the failure point of blocks and more radical procedures - instead of SMP/SIP, the favored distinction has now shifted to between acute/intermediate stages of CRPS on the one hand, and chronic CRPS on the other hand. Apologies for initially omitting part of the history.

Last edited by fmichael; 06-20-2010 at 07:40 AM. Reason: post-script re dating of key terms and related afterthought
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Old 06-20-2010, 02:30 AM #5
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Pete, it is becoming more apparent to me that there is no "Silver Bullet" other than some kind of miracle.
..and yes, I am probably SIP and therefore the 'pathology' truly lies in my brain and only a coma (no thanks) or neurofeedback (which I would like to try long term if I could afford it -- refer to Blueskies very interesting post) could reset the brain...
You've been with this for such a very long time...you are one of our pillars..
...

Mike, it seems that the information validates that my brain is on a lightening speed new path...it's bigger than 'me', bigger than my ego, my psyche, but hopefully not bigger than my 'mind'.... (I feel like a freak, a derailment from the natural rhythms of my body...)
As always, boundless thanks for the research...you are our honorary Doc

The last block I had (the popliteal) didn't help at all..It is a diagnostic tool..if it didn't help then they do one in the hip/back...if that doesn't help than it's probably in the ol' brain...SIP, zip-zapping through the wires of my electrical system...the ineffective seven Lumbar blocks (except for the first one two years ago) seem to validate this...

Since I am now probably SIP, (thank, everyone, for helping me figure this out)my curiousity and push for remission seem futile...and although my fiery optimism is receding, I'm still trying to....
Hope4thebest (Sorry, I had a bad day ...I panicked in the MRI machine today and they had to pull me out...) Tomorrow might be a better day... xoxox
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Old 06-20-2010, 07:39 AM #6
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Dear H4tB -

I - your (hon.) doc - just revised the post-script to my last, where I'm beginning to think that the point of which blocks gernerally stop having good results may have been somewhat earlier in the life cycle of the disease than that of a "good result" with a surgical sympathectomy or the like.

I have revised my PS accordingly and will follow up with more information regarding the "failure points" of the more radical procedures and will get back to you as soon as I get it. The issue being whether the ending of significant neuroinflammation completely explains the point at which the beneficial effects of a surgical sympathectomy would have come to an end, having been overtaken by the effects or cortical reorganization.

(To be continue.)

Mike
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Old 06-20-2010, 10:00 PM #7
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Hi Mike,
You have provided us with so much helpful and excellent information on this topic !! I have enough references now to help me mull through the difference between the SMP and SIP.. I think your summary of the SMP being there in the acute intermediate stage and evolving into SIP as the chronic stage develops says it all in a nutshell!!
I hope you had a happy Father's day with your family, and that you are seeing some tolerable and maybe even some enjoyable days!
Bask in the sunshine!
hope4thebest
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