Both of my legs from my toes to mid thigh are always ice cold to the touch and both hands and forearms are always cold as well. The pain is waves as well that go up and down. Never know when it'll come. Sometimes it's really bad, other times not so bad.

Hugs,

Karen

RSD/CRPS is so strange, isn't it (we all know it's a nightmare, too)

I have never experienced my areas being cold. Only hot. Just as if there were a heating pad on it for a long time and I had just removed it. I don't experience much in the way of color change either, but then again, two doctors have told me that I have a "bizarre RSD presentation" :rolleyes:

LOLOL Bizarre presentation. Ummm...they need to do a bit more reading I guess then. The majority of RSD'ers have "cold" RSD and a smaller number have "hot" RSD. Pretty self explanatory there. LOL Usually with the cold your skin looks purplish or mottled, blue from light to dark in nature. With the hot usually skin is redder than normal and can range from a light to dark tone as well.

Personally I love it when people associate the words bizarre, weird, and abnormal with me. LMAO!

Hugs,

Karen

Yeah, LOL, leave it to me to be "bizarre" LOL LOL:D

Actually, when he told me I have a bizarre presentation it's because:

#1 - It didn't start in a limb (so that alone make me in a lower "happening" bracket, ha ha)

#2 - When it began to spread, it took quite a bit of other areas until it hit a limb.

#3 - I don't have the same type of skin temp/color differences as most RSD'ers do.

I have a lot of no-no's that others might have as pain control.. for me..

No PT
No SCS
No Blocks
No blood draws or IV's above the waist area...

Because of the rapidity with which is spread, I have to be very careful now. That's what they said, "be very careful".. now I ask.. how is anyone supposed to be THAT careful? lol :)

I guess they are talking about me becoming part of a study on bizarre RSD presentations.. but hey, I always wanted to be famous, I just didn't picture my big break quite this way... ROFLOL!

have to chuckle over it or else I'd cry and never stop, ha ha

temperature changes
 

When my daughter had her nerve blocks, they always put a thermometer on her feet (one leg affected at a time so far) and there was always a significant difference in temp. Probably--trying to remember-- but a ten degree difference. After the block, a substantial temp increase--sometimes ten degrees warmer in the affected foot than the normal one. He always thought this was a good sign the blocks were working even if the pain didn't go away.

I know I am always warming her foot and leg and then finding ways to cool when needed. Mostly we use water but we generally have to warm it.

Wow Mainiac......yup bizarre! LOL :D Personally all those no-no's for you are no-no's for me too! PT is bad, just makes me hurt more. No way in heck I'd ever get an SCS, too great of a chance of spreading or infection. I had one block and was in agony for 2 months after that.

So do you have to get blood drawn from your leg then? That's must be a bit weird. To be that careful......yeah....LOL

Well, at least you'll be famous!! LOLOLOL Maybe only among doctors but hey, it's a start. :D LMAO

Karen

Bizarre presentation
 

is really the norm for RSD. But I read only 13% of us have HOT RSD. I have to be one of them and live in the South. The waves of pain you spoke of Karen and Mark is what I have from my knee to my feet. You are the first that decribed it for how it feels, thanks. These waves of pain always start at night when I go to bed and sleep on my back. I also have waves of heat coming from my back. My husband said he can feel the heat without touching my back. .how many more weeks until winter?:winky: Carose

I would prefer warm!! I had a full body thermogram and it was... amazing!!! especially when they showed it next to the "normal" person!!! LOL!! It was black/ dark purple to elbows/ knees and then a red blob where I had an infection. It was bizzare!!! But even my lower organs weren't taking up as much blood as they apparently should have (in comparison to this woman).. Weird.

I find we can never warm me up. I am in bed, its 20C an I have fleece pjs, 2 fleece blankets, an under blanket (fleece) and a winter duvet. At this rate it will be shawl time as well!!! Also, we used to put my legs in hot hot hot water (before boiling but hot) and just shove them in the tub. When we emptied the water they were red and coldish and within 20 seconds they were freezing and purple again. odd

Welcome!!!

Froggaxxxxx

I'm glad I was able to help your find the words carose! *Gentle Hugs* I did my own survey a couple of years ago and there were only about 5 out of 50something that took that have hot rsd.

Wow Frogga!! That's why I wish I could have a thermogram done, just to see! I know all about the legs doing that! I find it hysterical now that they get so cold so soon. It's just nuts I say!!!! My body temp fluctuates so much I can be freezing one minute and too hot the next. *sigh* It just sucks.

Hugs,

Karen