FWIW, I thought your discussion was reasonable and respectful. Demanding that everyone try using ice for their RSD would be inapprpriate and possibly harmful, you merely suggested people do what works for them and questioned the accuracy of a site that many of us take as "gospel" truth. Questioning is entirely reasonable, in my opinion.

That is why I was hesitant to say that I still use ice on occassion. I'm not recommending that anyonee else do the same, just explaning what's in my arsenal of pain fighting tools.

Anywho......I don't know what happened behind the scene here, but I like both of you a lot, so I hope you go with the ol' "agree to disagree" plan

Neurochick -

With respect, *admin edit*

LIT LOVE sought out my views in the use of ice, where she new I was too engaged in in other matters to go on the forum, I gave them, and stand by them. *admin edit*

And the whole notion of having everyone free to form their own opinions is one thing, but to express them without support is contrary to the ethos of this forum, where, over time, we have gathered anecdotal reports, combined them with published information, and on a number of occasions been significantly ahead of the medical community as a whole: we had worked out a fairly rigorous understanding of the autoimmune routes of CRPS months before it first appeared in the literature. Our collective work on tDCS is another.

Now, not everyone who comes to the forum is so informed. But when they ask for advice on treatments or the like, THEY HAVE THE RIGHT TO EXPECT THAT ADVICE THAT'S GIVEN CAN BE BACKED UP ONE WAY OF ANOTHER, even if it's only the anecdotal experience of the person offering it, which, 9 time out of 10, is what we bring to our posts in the first place. But to imply that we needn't be bothered by the facts is frankly to go the way of Nihilism.

And while I'm linking to Wikipedia, here's a little something from its article on Vasoconstriction:

Vasoconstriction also occurs in superficial blood vessels of warm-blooded animals when their ambient environment is cold; this process diverts the flow of heated blood to the center of the animal, preventing the loss of heat.

I hope this is helpful.

Mike

*admin edit* They are my opinions and comments in the same way as you make your comments here which people are free to agree or disagree with as they see fit. I stand by my comments.

With respect, I don't know where this idea has come from that people are only free to express opinions where they back them up with support. The vast, vast majority of opinions expressed on here are entirely unsupported even by annecdotal evidence. They are people's opinions, nothing more, nothing less. Annecdotal evidence is no better than opinion or speculation, thats why medical science wont rely on it for any decision making. This is supposed to be a forum where people can share their experiences and opinions and support one another, that is all. That is what most people do here. Even quoting medical articles and studies in responses is no guarantee of accuracy - it's always possible for people to miss contrary evidence or to miss more recent publications which reflect a different outcome.
*admin edit*

I have no desire to undermine the value of the totality of people's experiences as they contribute their valuable personal experiences to this forum but to believe that this means that the forum is leading the way in identifying scientific progress is worrying. The hypothesis that CRPS may have an autoimmune cause is a long standing one and I'm not sure how it could be thought that this forum (which has a constant and frequently changing group of posters) came up with this hypothesis before research scientists. The threads on TDcS are a very interesting collection of people's annecdotal experiences, but no more than that. They may well be useful to others, they may not. That technology has been in existence for over 30 years and has been tried by the medical profession to treat many conditions. accordingly, I'm sure lots of people have lots of annecdotal evidence for its efficacy and otherwise in a wide variety of conditions. That is not the same as a properly structured and run clinical trial.

If you have actually read any of my posts you will know that I am acutely bothered by 'facts'. You will see that evidence and facts are particularly important to me. I can't understand why you would suggest otherwise.

Your quotation from Wikipedia on warm blooded animals adds nothing to this and to provide it to me would suggest that you must believe I have rather limited understanding of this basic concept. I don't know why you feel the need to be quite so insulting in this way.

I'm sure you have lots of personal experience and knowledge of CRPS, clearly you regularly contribute the results of your searches for others to look at. It is possible for other people to have just as much knowledge but to communicate their opinions and knowledge differently. Your way isn't the "correct" one, nor is there anything on the forum that requires any poster to back up their opinions. This is not a medical advice site, it is for information and support.

*admin edit*

As to the current debate and comments, we are all people here who have pain, and many issues on how to handle it. No matter if it is RSD, PN, spinal or what ever,. use the information given by all, and accept or reject it based on your own experiences and doctors. It is just like the newspaper, we don't believe everything we read, but research it. We all have the ability to pick and choose what therapy works, and that is the real thing to keep in mind.
Lets not get testy, but offer support, God knows we all need it. We all need each other here too. I don't agree with all I hear either, but I listen and respect the other opinion. This pain stuff is hard to handle anyway you cut it. Lets let this go, and offer each other good wishes on their search for help. I care about all of you. ginnie

Neurochick -

*admin*

Specifically, I don't believe that my characterization *admin edit* was anything more than a statement of opinion oh my part that I believe to be well supported by the facts. I have been on this forum since it started in 2006, and have sparred mightily with some along the way. I certainly will never forget my long running "discussion" with Vicc over his assertion that RSD was "a classic ischemia-reperfusion injury (IRI)." See, e.g, Fact, fiction and RSD, Nov., 2006. But our discussions were always cordial, at least insofar far as I can recall. *admin edit*

*admin edit*

And for what it's worth, it was in recognition of the contributions you's made of lately in many of your posts - the discussion of GAD65 came first that I added the comment "Having said this, should anyone share with you published authority to the contrary, please let me know." I did so out of respect for your talents: but candidly without taking the time to read the read everything in the thread, just knowing that you and LIT LOVE had a difference of opinion on whether ice could ever be of value in the treatment of RSD/CRPS. So I was open to being persuaded to the contrary. I'm sorry if it didn't come across that way. And to that end, my last reverence to cold in warm blooded animals was by no means meant to be insulting either, just a recognition of the basic point that could triggers vasoconstriction, and if you want scores of free PMC articles on everything that physicians battling RSD/CRPS have tried to battle peripheral vasoconstriction, I would be happy to try and provide them but this one's probably the most intuitive accessable: Effect of tadalafil [Cialis] on blood flow, pain, and function in chronic cold complex regional pain syndrome: a randomized controlled trial, Groeneweg G, Huygen FJ, Niehof SP, Wesseldijk F, Bussmann JB, Schasfoort FC, Stronks DL, Zijlstra FJ, BMC Musculoskelet Disord. 2008 Oct 20;9:143.

And on the other side of the ledger, I would only add this from the Complex Regional Pain Syndrome: Treatment Guidelines, R. Norman Harden, MD, editor (2006), INTERDISCIPLINARY MANAGEMENT:

All PT must be executed within the bounds of the patients’ tolerance49 and never when the affected limb is insensate (such as after a block) or with CRPS Type II patients who present with pronounced hypoesthesia. Inappropriately aggressive PT can trigger extreme pain, edema, distress, and fatigue, and may in turn exacerbate the inflammation and sympathetic symptoms of CRPS; it is therefore to be avoided. Use of assistive or range of motion devices, prolonged application of ice, and inactivity may also aggravate CRPS. [Emphasis added.]

Note
49. Birklein F, Handwerker HO. Complex regional pain syndrome: how to resolve the complexity? Pain. 2001;94:1-6.

Then too, and in retrospect, I recognize that most people who have has CRPS for any length of time - myself included - have a certain amount of what may be termed "prefrontal disinhibition." See, e.g., Neuropsychological deficits associated with Complex Regional Pain Syndrome, Libon DJ, Schwartzman RJ, Eppig J et al, J Int Neuropsychol Soc. 2010 May;16(3):566-73; AND Wikipedia, Frontal lobe disorder:

Dysexecutive syndrome consists of a number of symptoms[7] which tend to occur together (hence it being described as a syndrome). Broadly speaking, these symptoms fall into three main categories; cognitive, emotional and behavioural. Although many of these symptoms regularly co-occur, it is common to encounter patients who have several, but not all of these symptoms. This is one reason why some researchers are beginning to argue that dysexecutive syndrome is not the best term to describe these various symptoms (see criticisms below). The fact that many of the dysexecutive syndrome symptoms can occur alone has led some researchers[8] to suggest that the symptoms should not be labelled as a "syndrome" as such. Some of the latest imaging research[9] on frontal cortex areas suggests that executive functions may be more discrete than was previously thought. The argument is that rather than damage to the frontal cortex areas causing dysexecutive functions in general, that damage to multiple frontal cortex areas that are close together (but responsible for different cognitive functions) can cause the various symptoms of dysexecutive syndrome.

The counterargument is that there is a central executive corresponding to areas within the frontal lobes which is responsible for much of the executive system and executive function in general, and that damage to this area causes dysexecutive syndrome.

Notes
7. Halligan P.W, Kischka U. & Marshall J.C. (2004) Handbook of Clinical Neuropsychology. Oxford University Press, 2004.
8. Stuss, D.T. & Alexander, M.P. (2007) Is there a Dysexecutive Syndrome? Philosophical transactions of the Royal Society of London. Series B, Biological Sciences, 362 (1481), 901-15.
9. Gilbert, S.J. & Burgess, P.W. (2008). Executive Function. Current Biology, Vol.18, No. 3, 110–114.

So I could have been more gentle in my criticism of you as well - certainly dropping the "angry-face" - and for that I apologize.

But on the issue of always being able to back up our view an a patient support forum, even if its simply something from our personal experience, as everything is in the end, there I stand my ground. And let me repeat, people coming on the forum, seeking advice, have the right to expect that - in some fashion - we will be able to articulate how we came to our views. (There is in fact one class of expressions on the forum to which this doesn't apply, and it's called a poll: see the icons at the bottom of the "Message" composer, it's the 5th one down in the 2nd column.) It's like the line from the late Daniel Patrick Moynihan, "Everyone is entitled to their own opinions, but not their own facts."

And here, I recognize the value of anecdotal experience quite highly. As I stated in a recent article in the RSDSA Review - wherein I say a word or two about the culture of this place - NeuroTalk’s RSD and CRPS Forum: An Online Community with Valuable Resources, RSDSA Review: 2012 Vol. 25, Issue 4:

I have seen laypeople create detailed postings on long threads over the years on topics that were then barely in the published medical literature. Two come prominently to mind. One was the role of autoimmunity in CRPS, first subject to detailed postings, including citations to the applicable medical literature, going back to at least December, 2006, which in turn predate any of the four articles listed under that heading in the RSDSA online library of Research and Clinical Articles. At this time neuroimmunologists at most of the major medical centers in the US refused to see people with CRPS because it was then accepted that CRPS was not autoimmune in origin. What set off this spark in the minds of the medical laity? The observation that women tended to go into remission during pregnancy, a hallmark of autoimmune conditions secondary to the need to avoid an immune attack on the “foreign” fetus in utero.

Check it out, Thread 785: Yeah! an autoimmune forum

It can be done.

take care,
mike


PS to ginnie: Completely agree with your view. I had - as you might have guessed - been working on this post since before your post went up. And as I try to make clear, I bear malice to none. (Hope you appreciate my reference to Vicc.)

Hi there everyone,
seems this thread may need some edits, as per NeuroTalk's guidelines, so I am locking it for a bit till we see what is needed, after which it will be re-opened.

I do want to remind members of the guidelines, which I am linking below.
http://neurotalk.psychcentral.com/showthread.php?t=1293

I am returning this thread back to the original topic after making some edits to a few posts that were not in keeping with NeuroTalk's guidelines, linked in my previous post.

Apologies to aascvt that things went a bit off topic there.

Just a few things to mention, in addition to what is already clearly stated in the guidelines:

1) NeuroTalk does not require anyone to back up their opinion with anything other than that it is their own personal opinion. We do not require scientific evidence for someone's opinion, and anecdotal reports are perfectly acceptable here.

2) It is perfectly understandable and acceptable for members to hold different opinions.

It is how they express that difference of opinion that makes all the difference on whether moderator intervention is required.
When other members are subjected to an interpersonal exchange of negative commentary, then it is our responsibility to remove that negative exchange, and return the thread on topic.

3) If members feel a post is in violation of the guidelines, or needs moderator attention, please use the REPORT button to the bottom left of all posts. But please do *not* retort as then your reply may well be in violation as well.
Flaming should be a self explanatory term....so before you click the submit button....ask yourself how you would respond if the post were directed at you....inflamed? Then, as the guidelines state, it is possibly not a post suitable for these forums, where, as per the Forums Mission Statement Now, I hope this conversation will return "On Topic" or we will regretfully have to keep this thread locked.

Please, let there be no commentary on my edits or posts here. If you wish to discuss these further with me, please use PM.

Thank you.

I've been using ice. I was disappointed when I read here that ice is not recommended. I hadn't heard the 'no ice' recommendation from my Doctors or PTs. Ice actually works very well for me to dull the pain when I am in an acute phase of 'swell and burn.' It would be great to think I am not injuring myself further by packing my feet and leg in ice when I feel desperate.

Dear Djhasty -

Hi. Can't see off hand how you would "injure" yourself as such by using ice, unless your ischemia is so severe it's causing skin lesions/ulcers.* For most folks - but by grace not you - it just exacerbates pain. And does so bigtime: look at all the people in temperate climates who complain about the onset of winter!

That said, your response is unusual, to be sure. May I ask how long you've been symptomatic for RSD/CRPS and whether you've ever had a positive response to sympathetic nerve blocks of any kind? (Just trying to judge how "sympathetically mediated" your CRPS/RSD may be or have ever been. It's sympathetic dysfunction that causes vasocontriction in the first place, by interfering with the normal regulation of the "tone" of all blood vessels from the alleles on up, excluding only the capillaries, which are too small to be "innervated" by tiny motor nerves in the wall of the blood vessel, a process that's otherwise making near constant adjustments every time we so much as move.)

Thanks!
Mike

* Or some nasty and systemic sympathetic disorders, including near-constant orthostatic hypo-tension (passing out when standing up), the violent dysregulation of gastric activity, etc. For reasons no one appears to know, these tend to be issues disproportionately effecting young women. On the other hand, fixed dystonia may be more of an equal-opportunity threat. But as to whether the application of ice could could exacerbate anything other than local skin lesions/ulcers - an apparent no-brainer - I confess to not having a clue. For that, I suspect someone would have to consult a true CRPS specialist, as opposed to most rank-and-file pain management physicians. But who knows? If ice doesn't increase your pain, it may have no deleterious effects at all. Dunno. (But I still wouldn't fool around with any local skin lesions/ulcers, which are a direct effect of the loss of blood flow in the skin.)

After reviewing this thread I have a question which maybe fMichael will see (as a follow on to something he noted here) as it sounds like he has reviewed some literature on this topic. I have many allergies - to many things. I have had hayfever since I was young. I currently take Zyrtec (or generic / cetirizine HCl) daily. I used to take Zyrtec 2x/day when I was early in this CRPS condition. I have now had CRPS (systemic symptoms) about 11 months and I take Zyrtec 1x/day for allergies and to prevent subsequent congestion. Would Zyrtec be a CRPS concern similar to taking pseudofed? I have to take something for allergies and Zyrtec works well. I have noticed that for some reason my allergies have really subsided since having CRPS... Thank you for your input.
And of note, I always appreciate everyone's input on their research and experiences. My good thoughts and prayers for all of us suffering with this condition.