Hi all

Technically, the term CRPS (Type1) has replaced RSD, and CRPS Type 11 has replaced Causalgia. So a search with "Causalgia" in it gets you further, as does searching for "CRPS Type 2" - dunno why the "2" makes the difference, but it does, almost nothing comes up with that 11!

Putting "Causalgia" into the google *image* search engine will get you some pics (horrid!).

And here's what I got with an ordinary google search:
http://www.google.com.hk/search?num=...a=lr%3Dlang_en

I would really, really recommend all of you with plain old RSD (CRPS Type 1) to read the most recent Dutch guidelines (the most exhaustive and recent research in the world). (I know, here I go again with the Dutch.. ) - I've posted the links in the sticky and also at the bottom of my post here.

In the Guidelines for Physicians, it makes it very clear that there are 3 temperature types - hot, hot and cold, and cold. Treatment can be different for the temperature types/phases, in that their research has shown differing responses with things like DMSO cream.

Relevant bits:

From the Patients PDF:
"A distinction is drawn between 'warm CRPS-I' and cold CRPS-I. Warm CRPS-I affects 95% of patients. In this form the skin is red and feels hot. Only 5% of patients experience 'cold CRPS-I' from the onset of the condition: the arm/leg feels cold, the skin is blue in colour and circulation is impaired."

From the Physicians PDF:
"Perez et al. conducted a double-blind randomised study on a large group of CRPS-I patients (n = 146) and found that DMSO cream had a beneficial effect on the symptoms of CRPS-I. This was the first study to also analyse the effect of N-acetylcysteine (NAC) at a dose of 600 mg three times a day. NAC was found to have a significantly better effect on primary cold CRPS-I than DMSO cream."
"In general, DMSO generates lower (direct and indirect) costs than N-acetylcysteine. However, sub-group analysis indicates that N-acetylcysteine generates lower costs and is more effective for patients with a cold form of CRPS-I. DMSO generates lower costs and is more effective for hot forms of CRPS-I."

BTW, N-acetyl cysteine (NAC) is a supplement, an anti-oxidant molecule that can absorb free radicals within the body.

Everything in these guidelines are backed up with research papers and cited (of course).

You can download the PDF for Patients and the PDF for Physicians.

Rogue420, if you can't find anything else, read these anyway, I don't think (?) the actual experience of the condition is very different between the two types of CRPS.

So: the direct link is:
http://pdver.atcomputing.nl/english.html

And just to explain why I think it's so important for us to read these, I'm going to quote a bit from my "links sticky" post below,
all the best

"I urge everybody to download both PDFs from the http://pdver.atcomputing.nl/english.html site, listed again at the bottom of this post, and take them along to your doctor.

The Dutch are streets ahead when it comes to dedicated research into RSD/CRPS and associated neuropathies, they have just published "The Evidence Based Guidelines Development (EBGD) Guidelines on Complex Regional Pain Syndrome type I (CRPS-I) dealing with the diagnosis and treatment of CRPS-I" published in 2006, which I cite below.

To read more about the developments in Holland, here's a good rundown provided by the Canadian PARC site. The research list starts with the oldest, and although you may be inclined to skip the older publications, reading it all from the top gives you a very good insight into how their thinking has emerged. Lots of cutting edge stuff on DMSO and oxygenation here." etc...etc...
http://neurotalk.psychcentral.com/sh...6&postcount=21

Thanks, Artist! You're a big help.

According to this, I am still going along with the assumption I have
cold CRPS I... with the onset it started with cold, blue RSD hand/ arm...

I will go with that assumption, but will talk to my doctor about it!

That is what I was thinking, but could be wrong... *hmm...*

Thanks so much, again, for all you've shared... I will be downloading all that info again. I did before, but a computer crash ruined that all, and I never got the chance to read everything. Will be doing that!

From what I know, I believe that article means that most people start with "warm RSD" and if not treated, transition to "cold RSD." Really though, the classic presentation of RSD is cold.

Most people also have periods of hot and periods of cold, sometimes changing suddenly many times a day. When I'm up and walking around, my foot/leg is usually warm, and it goes cold very quickly when I stop walking. In the evenings and and night, it's always pretty cold, but usually late at night it starts to get really uncomfortably hot. Most of the people with RSD I've talked to (hundreds, probably, over the past 12 years) describe some periods of hot and some of cold.

I do have a bit of a question though! Does anyone else kind of prefer the cold? When my leg is hot, I feel like the zappy pains are worse. When it's cold, I feel like I have a little bit of numbness or reduced sensation, which is better than actually having to feel EVERYTHING.

-Betsy

I prefer the cold a little bit more than the hot. Sometimes with cold I get numb in a few areas (which is nice!), too. Overall cold is really bad, but hot is a teeny bit worse- still severe pain for me no matter how you toss it!

My crps is always cold. (I prefer that term, I have used it since I first heard it.... add an "A" after the r, and you get how I feel, lol) I get burning hot "spots" on my legs mainly, about the size of a silver dollar... but the rest of my affected limbs are always cold.

I deal with it by dressing in sweats and wool socks, lol. I always have slippers on, too. Even if the weather outside is 95 degrees, I still have on my socks, which looks awful silly with shorts, I tell you what. I don't even take them off during "private moments" with Michael anymore, I am ashamed to admit, lol. But any more than 1/2 an hour w/o those thick socks and slippers, and my legs go bluish-purple and hurt five times as bad.

I also go through two heating pads every three years... they just don't hold up to continual use. And let's not forget the hot soaky baths... in winter, on the worst days, I might take two even three baths a day.

This is freaky... I get those "hot spots" sometimes too! The one night my neighbor was here, and was like "look at those red spots on your purple legs"!

I know *exactly* what you are talking about!

Hi Betsy, no, as IHH spotted, it does not mean that at all.

The piece says exactly what it means, it's talking about how RSD presents itself "at the onset", meaning right off the bat, from the very start. You'll see more in the article itself if you care to look - as I said, I included just examples, extracts.

Many things have changed in just a few years regarding RSD literature, we're trying to keep up to date.

I posted it precisely to make that point, not everyone begins with a hot stage. Since we're discussing "cold RSD" here, some hard reference seemed helpful - (but only if you read it!).

Anyway, here's a link (from the 3rd edition Clinical Guidelines) about the old concept of stages that I think you were talking about:
http://www.guidelines.gov/summary/su...2&string=treat
Reflex sympathetic dystrophy/complex regional pain syndrome clinical practice guidelines - third edition.
Stages of RSD/CRPS:

"The staging of RSD/CRPS is a concept that is dying. The course of the disease seems to be so unpredictable between various patients that staging is not helpful in the treatment of RSD/CRPS. Not all of the clinical features listed below for the various stages of RSD/CRPS may be present. The speed of progression varies greatly in different individuals. Stage I and II symptoms begin to appear within a year. Some patients do not progress to Stage III. Furthermore, some of the early symptoms (Stage I and II) may fade as the disease progresses to Stage III. The following stages are presented in these guidelines merely for historical significance."

If anyone needs further info on the old staging descriptions, they're here:
http://www.ninds.nih.gov/disorders/r..._dystrophy.htm

BTW, While that "staging" concept may not be used any more, my RSD *has* progressed, from hot and swollen at first, then cooling. Not cold yet, though and more greyish, dry and withered. I think RSD does progress, but they superceded the "staging" because everyone is so different and we don't fall into nice, neat categories.

all the best

Artist,

I'm sure you're right about what the article means, but I also tend to disagree with it, if I didn't read it completely wrong (which is possible, since I read through it quickly). I know that there are people who have primarily what they're calling "hot" RSD. But most people have times with both hot and cold symptoms. I don't think it's nearly as clear-cut as saying someone has "hot" RSD or "cold" RSD. Plus, most of the people I've talked to (and those I've met in person) talk more about the cold than the hot, so I'm really confused about that 95% having hot RSD thing.

I've never believed in that "staging" stuff. I don't think really anybody's RSD has ever followed a strictly outlined course. I'm not sure ANY disease ever follows an outlined course! I've had RSD for more than 12 years, and I don't fit into any stage. I have aspects of all of them! I also don't believe that there are real distinctions between hot and cold RSD, at least right now. I'm fairly sure that when and if the researchers get off their you-know-whats and find an underlying cause for this stupid disease, we'll find out that there are different causes in different cases, possibly corrolating with different symptoms and/or responses to treatment. Of course, then they'll have to come up with even MORE names for RSD/CRPS/whatever-they're-calling-it-this-week...

-Betsy

My hands and feet have alway felt cold to me (some coolness but not much to other people's touch, not like Reynaulds) even before the RSD. My hand did start to turn a bluish/purple but now has a red area on it. My legs are always mottled & my knees get purple. But, sometimes my feet will get "hot flashes". Weird. I too, almost always have on socks & slippers. Wish I could wear those cute shoes I see others wearing.
Linmarie

Hi Betsy,

Then I don't think there's anything to agree or disagree with That small paragraph I quoted was just talking about the starting temperature of the RSD process, but the Guidelines (not an article) agree with you (and me) throughout, that there is "cold RSD" "hot RSD" and "both RSD".

Yes, I'm sure in 10 years times it'll be a whole other story; many of us here believe there are probably many different kinds of RSD, possibly including things like erythromelalgia and Reynaud's....time will tell!

all the best.

PS Here's the PARC link:
http://www.rsdcanada.org/parc/englis...anderlaan.html
"A huge committee of doctors, researchers and experts in Holland worked tirelessly for 5 years to write the standard treatment protocols guidelines for treating CRPS in Holland..."