...what I need in all these links.

I am having a VERY hard time finding articles/sites that talk more about cold crps type II. I know it's not as common as crps I, the hot kind, but you'd think I could find something out there! I'd especially like to see any pics, to see what (if any) differences there are. The only difference I am sure of is that I do not have the same skin issues as most of you... which I am mighty grateful for. But it also makes me wonder, sometimes, if I have been misdiagnosed. I've seen too many "experts" and had too many tests for that to really be possible, but I still wonder sometimes. How was I lucky enough to escape the swelling and sores?

Do any of you suffer from this type of rsd? I'd really appreciate any info you might have. I may have had rsd for 14 years, but for many of those years I was offline (internet connections are almost impossible to find in Mexico, and we traveled in an r.v., had no permanent address), plus there is sooo much more known about rsd than there was when I was first hurt and seeing specialists. After those first two years, I went w/o treatment of ANY kind for 9 years. Until 3 years ago, all I could do was self-medicate with marijuana, which helped tremendously, but that was all I had access to. Other than that, I used a more holistic approach... mainly because it was cheap and didn't need an rx, lol.

Any help would be greatly appreciated, thanks in advance

i'm not quite sure what you are refering to as 'cold' rsd. my foot and lower leg are freezing to the touch and yet the foot sweats badly at times. do you mean cold to the touch? joan

I didn't look thru all of these but here is a google listing of images-
http://images.google.com/images?um=1...d+crps+type+II

websites listing for terms "cold CRPS type II"
http://www.google.com/search?q=cold+...ient=firefox-a

websites listing for terms "cold crps II"
http://www.google.com/search?hl=en&c...II&btnG=Search

Ok, this has been boggling my mind a lot lately- I have symptoms of cold and hot RSD! I have cold purple skin one day, and sometimes hot, red, swollen extremities/ face/ back, etc!! What is this?! A combo of both?! Do I have hot or cold RSD?

Rogue, when reading RSD literature I usually think of it as concerning both types.

My feet on a "cold" day:

My feet on a "hot" day:

Kind of "both" on a very calm day (not real bad coloration):

(as you can see, my left foot is worse)

http://www.neurology.org/cgi/content/abstract/67/4/673

One of the many doctors I've seen, an Orthopedic surgeon, recently labeled my RSD as Cold. I was diagnosed last Fall with RSD in both hands...after two stellate ganglion blocks my arms turned to two giant ice cubes so I was put on Norvasc for my circulation.
In Febuary it spread to both feet, burning pain constantly and an almost overnight thing. My feet burn but to the touch feel cold. Ortho did a scan of my feet and cold stress test....basically no circulation. The scan should show red and my feet and hands were all blue with just a couple of red dots. That's when the Cold label came in. I still can go from hot to cold in moments but the cold external temperatures are really hard for me to recover from.
Hope this helps a bit....
Jeanne

Thanks, everyone! I really appreciate the responses, they were very helpful.

I also got out all my old med records and went through them again. It's all the paperwork from court, including records.... not sure why I've kept them all these years, lol... but it was very insightful to reread them.

It turns out that I DID have the sores and discolorations, way back at end of year one. Not as bad as I see in your pics, however. But when I had the Guanethidine blocks for that gov't trial, they went away and never came back. I don't know how they handle those blocks now, but for the trial I had over 30 of them done! I didn't realize just how many had been done... I only knew it was a LOT, lol. They helped so much I wouldn't have cared if I had to have them twice a week for the rest of my life. Have any of you had them done? Where they remove all the blood from your leg and fill it instead with the meds? The tourniquet was painful, of course... but well worth it in the end. I was heartbroken when the study was over.... and back in a r.o.m. boot within 2 months. (I wore that danged thing for seven years!)

IHH... I only had the blueish cold foot (only in the right leg at first, spread took quite a few years... could that also be credited to the Guanethedine?), never the red angry swollen ones I see in all the pics. That's why I was asking all this in the first place. Michael was beginning to question my dx, after seeing all the pics. I got freaked out by that, I admit it. I found myself wandering around the net searching for other possibilities, none of which fit the bill. M has always been my biggest supporter, and to have HIM question what was going on was a mind-blower.

After doing all the research I could, I am left knowing my dx was right on target after all. There is just a difference between hot/cold rsd, rsd I and II, and between types and longevity of treatments. If the Dr.s don't fully understand rsd, why would I think I could?!? But it does look like being a "Guanethedine guinea pig" was a very good thing to be, lol. I can't imagine what would be going on if I hadn't been!

I know it very well. For many years, with the RSD in my left foot only, it was extremely hot. Not only did it feel like it was burning, but it was hot to the touch.

About a year and a half ago, the right foot all of a sudden it got cold. I mean, it feels like I have it in a freezer. I can't figure out how to get comfortable at night. (Heavy bankets or not?) I end up with one foot in bed and one out in the open.

I visited South Florida a short time ago and tried to keep my right foot directly in the hot sun as much as possible to warm it up, but it never felt anywhere close to a normal temperature.

I have to keep a heating pad under my desk at work and have it plugged in and on my right foot (the left one is still hot) to deal with the cold.

This is so wierd. I don't wish this on anyone, but it is comforting to know I an not alone. Thanks for starting this thread.

Mike

Well, here is what I think: I have cold RSD, my hands rarely go hot/ swell, they are usually purple and cold. My feet are cold/ purple at times, and you know what makes them go hot?! Getting the blood flowing~ whether it is wearing the compression stockings for a while, soaking them in warm water or walking/ using my feet.

Strange. My conclusion is that I have cold RSD. No doctor has told me what type I have got, but they always write on the records that my RSD skin is cold to the touch (and every time I have gone it has been... strange!), so I guess I'll assume "cold"... not sure if it makes much of a difference? Unless it has something to do with what stage of RSD I am in...

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