Would you "fire" your physical therapist?
 

Hi All..

New to the board.. for anyone that wants my story, my intro is on the RSD intro page. I have been in PT for my last knee injury (crush injury) since about November. I have thought this man to seem quite knowledgeable. He is sports focused and does rehab for state teams. He has spent a lot of time with me rather than leaving me unattended (which we can all do at home) like my last PT did. It was all going good until I first told him about my tentative CRPS diagnosis from my surgeon. That is how things started for me, after all.. it was " I believe you may be developing CRPS" and almost no information about it".. then waiting for diagnostics, then referral.
Perhaps because it was a maybe, his response was to equate it with fibromyalgia, and to say that it was one of those big blanket statement diseases that a doctor pins on when they don't have a diagnosis! By the way, I'm not going to argue about fibromyalgia, it may be very real and quite painful.. but no one who knows both diseases would think that the two are comparable.

As I moved forward in stages of treatment, he has been much more respectful, however it does seem clear to me that he just doesn't know anything about the disease and I'm not sure that he wants to or feels that he needs to.

Next, as I've been discussing in the intro thread, I'm sadly just realizing how dangerous my addiction to cold therapy has been. That has been encouraged of course, by every PT I've had including this one, and all of my doctors. (Cringe).

To top it off, they got sloppy in their billing this month, and billed me again for three dates that I've already paid for. I've explained this to them and can prove this via printed check etc. I ask them for a copy of the first invoice that they sent me (reflecting what dates I was asked to pay) and they "can't do that".. for some reason. Billing Dept was insanely rude to me.. to the point where I cancelled my next appointment until this is resolved.

Not good. Sorry for venting.. but these are a few strikes. I just don't know.
:confused:

Hey there! Sorry for all that you are going through. I would fire the PT in a heartbeat. If you do indeed have CRPS and are going through physical therapy, then that therapist needs to be knowledgeable otherwise they can do more harm than good. PT's definitely like to use cold therapy/ice, but if they knew what RSD/CRPS was they would never recommend it as it is dangerous for this condition!!

I hate when offices send bills, demand you owe and then they can't back it up...that is pure BS. If they can produce a bill, then they can pull up your account history, just don't give up...be persistent with them.

Wishing you the best of luck!
Nanc
:hug:

Being an excellent PT for non RSD patients does NOT equate to being an excellent PT for you. You likely need a new PT and doc/s.

Stop the ice asap. The fact that ice went from unpleasant to tortuous, was one of my first signs that something was very wrong. I allowed it to continue for months--stupidly. Now, I'll never know how much additional nerve damage was caused.

I agree with the others...fire them and move on. It's hard...especially when you like the therapist...but the wrong kind of physical therapy can do much more harm than good in the long run. Doctors had be icing for a long time and I think it contributed to the progression of my RSD to the point where blocks didn't help at the 6 month mark (pure speculation on my part but everything progressed so fast that I really think the icing and immobilization were big factors in that).

I'm not necessarily saying that your physical therapist has to be an expert in RSD...that would be preferable but is not necessarily the only option. At the very least, your physical therapist should know OF RSD and be willing to learn more about both the condition and YOUR specific case (as we are all different). You need to be dedicated but you need a therapist who will tailor the physical therapy to you as an individual so you can get the most out of it.

Good luck and take care.

Well said, Catra !

I wouldn't hold it against the PT that they used/recommended ice/cold therapy for your initial dx, but once the dx of RSD was introduced, any PT who didn't already know about RSD and appropriate interventions is obligated to do some research on what interventions are advisable and which are contraindicated. They should have immediately stopped the ice treatment and conferredith the prescribing doc at that point.

Your expression of being "addicted to ice" caught my eye. When a bullheaded physiatrist was misdiagnosing and mistreating my TOS, insisting that I just had to do more weight lifting to fix my severe pain, ice for 16 hours a day felt like the one thing that was saving my life and numbing the pain. Now I realize it probably caused or at least contributed to the pain from TOS developing into RSD. As soon as I started reading up on RSD, I realized it was a "no-no" but at the time I had NO other effective treatment to help manage the pain.

I'm embarrassed to admit it here, because I understand refractory pain, but on occassion now I still depend on ice packs when I get really deserate. Thankfully, most days now I do have a reasonable level of control of the pain thanks to the right medication combo and other interventions.

Finz

There is a great deal of misunderstanding and misinformation out there about the effect of ice. There seems to be lots of urban myth about what it does and doesn't do, especially in relation to CRPS. I'm incredibly hesitant to mention this because I appreciate that people have very strong views but I if I were you, I wouldn't worry at all about your periodic use of ice packs.

You believe this is incorrect? Although the website is dated, I have found that Hooshmand is spot on in many of his explanations.
http://www.rsdrx.com/rsdpuz4.0/puz_102.htm

I don't share your view about much of that particular website content I'm afraid.

I honestly don't want to offend anyone which is why I've never mentioned it before. There are some articles on the site written by other authors which may be more recent, more accurate and of better quality. The majority of it is nothing more than that particular doctor's personal opinion and unsubstantiated hypothesis. It contains virtually no references to any published studies, peer reviewed research, recognised authorities or texts to back up, justify or evidence any of the opinions and hypotheses. Too much of it is based in pseudo-science and some of it just makes no sense. It has to be treated with great caution.

The specific part you referred me to (which I have looked at in the past when researching this urban myth previously) is really worrying and seems to be where the urban myth has sprung from. It contains some bizarre statements and, again, there is no evidence at all to back up his claims.

I'm sorry. I don't want to offend people because most people who post here seem to like that website and think it has good advice and I don't want to stir things up but I can't agree and it is certainly not a source that any of the leading CRPS clinicians and researchers I've spoken to would ever look to.

Neurochic, thank you for your honesty about the website you just referred to. I have often referred others to it and even considered going there a long long time ago, then though I 'questioned' some of Dr. H's viewpoints in some areas.
I think that is why I never did go before he retired. loretta

Neurochic - as loretta said, thank you for your honesty. I have to agree with you on that website. I have never used that website as a resource for me as I do not agree with most. I have had RSD/CRPS for 22 years now and have ALWAYS heard the same thing about ice - don't do it! I have heard this from many, many resources be it online or in person. And from personal experience, it has done more harm than good with me.

I would say that this is one is not an urban myth, I would say that it is a proven fact. Even the RSDSA site advises against using ice.

Just my opinion...Nanc

Hi aascvt
 

Welcome to Neuro Talk. Glad you for this forum. There will be people to help you, who may know more about CRPS than your PT Does. Not all therapists are created equil. No cold therapy. My son is a OPT. He Does know about RDS and CRPS, as he was required to keep taking classes throughout his career. Find a therapist who knows what this awful condition is, one that knows how to help you. If he is requiring cold therapy, he is doing wrong by you. I hope that you can find someone else. ginnie:hug:

So can you provide a link of a study showing that ice does not cause damage, please? Just because a study hasn't been done, doesn't make something an Urban Legend. Even when a study is performed, it doesn't mean it won't later be disproved.

Much of Hooshmand's advice is anecdotal, and while I understand that isn't respected by many, I have found his info to be true. Many RSD specialists scoff at their patients anecdotal evidence as well, but it's amusing to find many of us continually share the same symptoms and reactions even though our docs advise us that our opinions are not valid.

The reason these recommendations are made in relation to ice is because patients who have burning neuropathic pain and try to relieve that pain with ice. They over-use the ice, cause tissue damage which can become very severe and in turn can cause tissue necrosis. This is clearly catastrophic for anyone but for someone with CRPS really is a disaster.

Ice used correctly in accordance with a normal RICE type icing protocol will not do that and will not cause damage. If you have cold limbs it may be unpleasant in which case there is clearly no point in doing it.

[QUOTE=Neurochic;952549
Ice used correctly in accordance with a normal RICE type icing protocol will not do that and will not cause damage. If you have cold limbs it may be unpleasant in which case there is clearly no point in doing it.[/QUOTE]

I disagree, I had this issue when they were using ice on shoulder and foot injuries I had. It was not used to cool a burning area or even overused, it was used in the proper RICE way. In my case, it made the RSD worsen and spread. The ice did more damage.

In your opinion.

Hi Nanc..

Forgive me for inquiring on this subject. But how is it that you are sure that the proper use of ice made your RSD worsen and spread? I am new to the hypothesis (at this time I have to call it that..) that ice is an absolute no-no for CRPS. I have read Dr. Hooshmand's article and understand his theories to an extent.. however that is what they are to me at this point. I would love to see some published studies, research trials, etc that have been done to evaluate this theory.
The reason why I ask how you know what made your RSD worsen and spread is because we know the nature of this disease. It is a disease that is systemic in nature due to the location of the sympathetic nerves. It is a disease that almost always spreads and worsens over time.

I don't know what to believe about the ice theory. I am steering clear of ice for now, which is agonizing because it was profoundly helpful for my pain. But for me, the verdict is still out and I need further evidence.

Thanks..
 

Thank you all very much for your replies.. although we're getting a little off topic. I hope I have not caused trouble here by accidentally bringing up a tough subject!

A

It's not a particularly tough subject. The use of ice has never been a controversial subject until now.

I was in PT for two years, during a period pre and post surgery/s. I began exhibiting a few RSD like symptoms but did not have burning pain, during which ice was used multiple times per week. I had another surgery and started PT within a week. The burning pain and hypersensitivity were obvious during the first session. Because it was a new PT office, they assumed I had a low tolerance for pain, when actually the opposite is true. The first ten minutes of being under ice packs was essentially torture. I would sit and cry in the corner until my limb would go numb. My limb was sweating, turning red, and getting cold at various random times, but after it being iced, it didn't return to normal temperature for hours/days. It became more dysfunctional, to the point that if I went to an appointment on Monday, the therapist could still feel my Popsicle limb on Wednesday. Ruh-roh! It was communicated with my doc and he advised no ice and sent me for a consult for RSD. I hadn't had a problem with heat initially, but shortly after attempting to switch to paraffin baths, it was determined that my limb couldn't tolerate even moderate heat. 60 seconds in a paraffin bath I was not only lobster red, but it felt like my skin was on fire.

Not everybody exhibits the same symptoms at the same time. If ice doesn't feel unusual to someone, they might just be fine. But, what if the damage takes time? I sure wouldn't let anyone experiment on me with ice if I knew then what I knew now. Anecdotal evidence for sure. It took me a LONG time to trust listening to my body. I still have the same pain, but my atrophy is gone, I have normal range of motion, and while I've had areas of spread--they've all been temporary (from days to a year+).

After I finally received a tentative diagnosis, I went through a series of SGB which had varying degrees of success. I then had an RF neurotomy. It made my symptoms worse, permanently. For YEARS every new doc I met I asked about the RF and was told it couldn't have made me worse or they just wouldn't answer. Finally, I found the info on Hooshmand's website stating how dangerous they were. When I finally found a doc that agreed that they are a very bad idea, I knew he was someone that I could trust to work with.

I'm well aware that Hooshmand's website is outdated and potentially unorthodox. He did treat many RSD patients for many years though, and seemed to actually listen to his patients anecdotal evidence--something MANY docs ignore.

Cold that was less intense from frozen peas seemed to be much less traumatic on my body, then ice packs, so those wanting to experiment might try them... Personally, I feel my body responds better to Lidoderm patches and I know from years of experience they don't any negative side effects.

I am happy to answer your question. A brief history on me first. I developed RSD in the right side of my face in 1991. With aggressive treatment, I was in remission for several years (a big flare took me out of remission). I hurt my right hand in 2009 and went through so many drs before I got a correct diagnosis. I developed RSD in my hand and it mirrored over to my left hand. I had a bad blood draw in my left arm, they treated it with ice and RSD spread there. I had left shoulder surgery, turns out the spur removed wasn't the cause of the pain, RSD was (thanks doc). I hurt my right foot (hit it on a metal door jam) and also had planters faciitis. The foot dr injected my foot and treated both issues with my foot. Ice is a main treatment for planters faciitis and it helped clear it up but it hurt the other part of my foot. RSD set in three toes, down the side of my foot and up around my ankle. It mirrored over to my left foot. I also have it in my left leg. My right shoulder has been bothering me and I got a couple of injections in it. They said it was inflammation in the AC joint and I needed to ice after the injections. The second time I iced it, it burned on the inside and felt frozen on the outside...well, RSD has set in.

The reason that I think ice made me worse is because each issue/injury was initially treated with RICE therapy and I got immediately worse after using ice. I NEVER overused ice or left it on too long. You may be wondering why I kept using it. Well, all of these injuries happened in a short period of time and when I realized that ice was doing more harm then good, I stopped.

Anyway, all the details are too long for me to type here but I know what ice did for me and it wasn't good. I personally would recommend to never use ice if you have or suspect to have RSD/CRPS. I know that chances are that the RSD would've spread with or without the ice. I think the ice increased those chances and helped it spread quicker.

Does any of that make sense? I am tired and have a headache while typing this...:( Let me know if you have any further questions or need clarification in anything I said.

Nanc
:hug:

Nanc, I have a question- I just recently posted a new thread on 'eyes burning and tearing' I've had RSD since 1996 and now full body in all limbs. But never in my eyes. About two weeks ago I had a complete meltdown and cried for a long time. the next day my eyes were so swollen. I never used ice in all my years of of rsd and probably 200 pt treatments from frozen shoulder in both shoulers and frozen hand etc. So I didn't think of 'ice' causing spread-any way, I used crushed ice in a ziploc on my eyes to get the swelling down and I've had these horrible symptoms with my eyes now.. I have several spells of 3-5 minutes- 5-6 times a day or so of my eyes burning, stinging, like razor blades in my eyes. then the tearing starts and is uncontrollable. These spells come on randomly with no control, if I were driving- would have to pull over as these are soooo bad.
Do you or anyone have an opinion? Am going to see eye specialist to rule out anything major like detached retina.
Reading your post on ice and your spread made me remember my swollen eyes and me using ice. It just seems like more than a mere coincidence. Any opinions anyone? Thanks, loretta

Hey Loretta! Sorry you are having such trouble with your eyes. You know, the only issue I have had with my eyes is really just in my right eye - the RSD side of my face. My right eye will get all irritated, watery, swollen and have a lot of junk coming out of it. The day after my eye is like that, I have a flare-up in my face. I have never used ice on my face or eyes when this happens and I have to say these flares go away quicker than any other flares I have.

If I were you, I would definitely get your eyes checked out to make sure nothing else is going on with them. Make sure you tell the doctor everything about the crying then using ice afterwards, now this incredible pain. If it is nothing else, then I would think the ice might have something to do with it...I would agree with you that it does seem more that a coincidence.

Keep me posted and good luck.
Nanc
:hug:

For what it's worth, and I don't for a second seek to change anyone's opinion, the ice issue is one of many that I have researched extensively in relation to CRPS since I was diagnosed years ago. I knew it wouldn't be a view that most people here would agree with which is why I've never raised it and seriously hesitated to do so this time.

fMichael was kind enough to give me permission to post his (as always informative) response to my question about ice.

After about 6 years of using the lidoderm patches, I develope d a systemic allergt to lidocaine in all its forms. It is a rare allergy, but possible side effect. Sorry to go off topic.

With respect, the comment in the bold, coloured text misunderstands what ice actually does to blood vessels and muscle tissue when placed on the body in a non-acute situation. People with CRPS don't have acute tissue trauma and when ice is used on the body it doesn't constrict blood vessels. It reduces pain, relaxes muscle and causes the blood vessels to relax and dilate. This is, for example, why ice massage is regularly used by physios and athletes.

I'm not prepared to get into some kind of battle of published medical authorities. *admin edit*

Everyone is welcome to (and should) do their own research and form their own views. I've said all I have to say on ice *admin edit*

I asked the question to fMichael about ice, and didn't mention the context. He gave the response. I then thanked him and explained that it had come up in a thread and he gave permission to quote him.

*admin edit* FMichael is someone who's opinion I frankly trust more than my known for a variety of reasons, not the least of which because he is a veritable fount of knowledge inregards to research on RSD/CRPS.

When you advise the forum that ice is safe and goes against the advice that many of our doctors have provided and that I personally believe could be dangerous, I don't personally feel it's too much to ask or imply if this is your personal opinion or to request further information if we as a community missed research stating otherwise.

Using Hooshmand's website is perhaps lazy on my part, but it certainly isn't the only place RSD/CRPS that advises against it.

*admin edit*

Everything people write here is always only a personal opinion unless its an attributed quote from a published source written by someone else. It can't ever be anything else so there is never any need to say that something is personal opinion.

i was very careful about the way I discussed the ice issue. I haven't suggested anyone do anything different than they are doing, I haven't suggested anyone go against medical advice, will see that if you look at my posts. I said that having extensively researched it, I believe a lot of the information that is repeated from place to place and person to person is wrong. There is a great deal of misunderstanding about what the application of ice does to the body.

*admin edit*

*admin edit*
It's a place to give and receive support, personal experiences, and comfort, as well as educational information. It would indeed be very very SAD to loose even one person. We are all dealing with a very painful, life altering disorder. We have already had way too many losses in our life. Let's not add any more to them.
loretta

This is the point of linking. You don't believe Hooshmand is creditable. Fine.

But, it is confusing to me that within the same post you give an opinion in exactly the same manner that he does--with no evidence to back up your claims.

If the research has been done, and it is an urban myth as you say, that's pretty significant information to this community.

*admin edit*

If you both are referring to the joke fMichael made, it was just a humorous response to me when I asked about ice. He wasn't following the thread, and had no ulterior motive whatsoever. My apologies to him!

*admin edit* I just worry about advise that could potentially cause permanent damage to those newly diagnosed. When in doubt, it's better to be cautious IMO. "Do no harm."

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*

outsider looking in
 

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

time to begin again......
 

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.

Ice use with
 

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.)

Zyrtec (antihistamine) issue for CRPS condition?
 

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.