Hi everyone, My pain management doctor put those temperature tapes on my legs last month during my appointment, I think I mentioned it. He freaked out when he saw the results. I was actually surprised they were not colder as they hurt so badly - to me as they were freezing as usual. He said the temp of 93 degrees farenheit was shocking. So I looked it up this am and now I know why he was so upset. this is a quote from the hypothermia website.
"Our temperatures drop too far when they dip into hypothermic internal temperatures of 95 degrees and lower." Since my leg was at 93, its no wonder we all are in so much limb pain and I why I feel like I have freezer burn , I do. Lol.

Just thought you might find this interesting. He used the stips you take childrens temperatue with. cz

I keep extra clothing on the affected areas. Usually when I'm active just a wrap on my hand is enough but I also wear a sock with the toe and heal cut out, an elbow brace, and a pajama top with everything cut away except the left sleeve. It seems to fool the body into keeping everything the same temperature but it isn't always effective.

To me that "freezer burn" just feels like dead meat; highly ennervated meat but dead just the same. This sensation isn't that common unless I've been overdoing it.

Hi Ima, the extra clothing I too still have to wear cutouts even though I am way past most of the early alloydian, I still can not stand to have bands around my ankels and knees, etc. also where I had my port. May I ask how long you have had rsd, Iam wondering when we can stop cutting up our clothes, thanks cz

This is interesting thanks for sharing.

I have hot RSD/CRPS. My legs feel like you could melt butter on them they get so hot.
In the winter I never need a heavy coat. The cold temperature makes the burning feel better but it doesn't help the deep throbbing pain in my limbs.
My poor husband is always freezing. I keep the air low in the summer and heat just as low in the winter. My daughter wears sweat shirts in the house all year round when she's home.

It's interesting how this beast affects each of us so differently. Thus the reason for no cure.

SB, that is why I typically will mention "hot" and "cold" rsd when it comes to people talking about ice or how to make something feel better. Us "cold" people are some hurtin' puppies with cold, but of course "hot" isn't bothered by ice or cold and is perfectly fine for you because you're not restricting already constricted blood vessels like mine are being a "cold" rsd. :-)

This is very true because even everyone with cold or hot rsd have different experiences somewhat because we are all individuals. So it will remain.

Hugs,

Karen

Hi Karen, since I have cold rsd, and the vascoconstrition is very obvious my question is If you ahve hot RSD isnt the same thing happening to you, vascoconstriction, as it is with me? your body is just reacting differently? In the begining my legs were red hot, as the stages advanced they went cold, but the underlying problem was always vascocontrition. So is it the same. sorry for my awful spelling. cz

cold RSD: vasoconstriction
hot RSD: vasodilation

Marleen,

Thank you, that is very succinct. From here, we can picture:

vasoconstriction (constrict - Verb: to draw or press in; cause to contract or shrink; compress) -- smaller blood vessels, less flow

vasodilation (dilate - Verb: to make wider or larger; cause to expand) -- large, open vessels, more flow

Mike

I have cold rsd too. Here's an explanation between the hot and cold. They aren't the same thing at all. One, cold, is vasoconstriction. Hot is vasodilation because there's too much blood flowing through the blood vessels, versus cold where there is a lack of blood flow.

Here's a link that explains it as well, Heat/Cold Adaptation. It says what the quote above says. "Red skin indicates vasodilation and the pooling of blood near the surface for release of heat."

Hope this helps clear it up. :-) Some people start off with hot rsd and it gradually changes to cold, but cold usually stays cold and sometimes people can have both at the same time.

Hugs,

Karen

Karen, hi, im so surprized that we would have both components through the duration of rsd- that it can be so extreme in the spectrums. I was incorrect, I thought that whether hot or cold, we both suffered from vacoconstrition. I thought it just changed with the life cycle of rsd. I went through the heat in the early stages. Now with the cold, I still have excessive sweating its a huge problem requiring potassium replacment reguarly, I really try to watch it as nothing burns more than an IV of potassium. do we both have the blood pooling, I understand that our nerve cells literally leek blood. I have had lesions that look like blood blisters, so so painful. If i knew how to post pictures i would show you. Dr. S has told me that our edema is different, its in the nerve cells or rather its the nerve cells holding the fluid and leaking the fluid. the blood goes down to my extremeties but does not return,as my body considers them as lost cause. it still seems so odd to me that the disorder is on both ends of the spectrum vasoconstriction and vasodilation..and I agree we may have them both at the same time in different parts of our body. thank you for you post, hoping you have a good day, cz