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!

hello, i'm anewbie here as well as to rsd just diagnosed 4 wks. ago. i have read everything i could find but never really knew there was hot or cold. it's kind of funny (not ha! ha! funny) because as i sit here typing on the computer i am wearing a pink glove that belongs to my daughter. my right hand will feel like it's burning sometimes but other times it's cold as ice. i thought that's how everybody was! thanks for the info. you guys have really neat and inspirational sayings and pictures and links. i'm lucky just to figure out how to use this board so forgive me if it's a little bland i'm not very good with the computer. thanks again, jennifer

Hi Jennifer! nice to meet ya in cyber space.. LOL I get such cold hands.my daughter says, mommy.. please, your hand is cold. I forget!! I also get a sweaty hand and shiney too.I have a hand now that is getting kinda deformed.. all due to RSD the swelling, pain, discomfort is awful... but thank God for this board, eh?? Love, Desi

jenny - I'll copy your post and make a new thread with it for "hellos" and such.

here's the link to it-
http://neurotalk.psychcentral.com/sh...ad.php?t=20474

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