[CZZ74]

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

[Imahotep]

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.

[SBOWLING]

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.

[GalenaFaolan]

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

[loretta]

Originally Posted by CZZ74

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

Hi CZZ74, Thank you for the information. Sorry you have much cold pain. I alternate between Hot and Cold.

Does anyone ever have like trickling water running in their legs. I actually will take my hand and feel for running water down my leg, thinking I've had an accident of something. But it's always dry-just feels like running water down my leg? Anyone experience this, I would appreciate knowing, Thanks, loretta soft hugs

[bassman]

Originally Posted by loretta

Does anyone ever have like trickling water running in their legs. I actually will take my hand and feel for running water down my leg, thinking I've had an accident of something. But it's always dry-just feels like running water down my leg? Anyone experience this, I would appreciate knowing, Thanks, loretta soft hugs

This may be similar. I often have the sensation that my sock is totally wet. I almost expect to see pools of blood pouring out when I remove my shoe. Of course, like you, it is always dry.

Regarding the thermometer test: When I was first diagnosed in the eighties, those temperature strips were either non-existent or not very accurate. The doctor used a thermal imaging camera to photograph the heat coming from my skin. (My only nude posing has been in doctor offices. Good thing, too! No one else would be interested. LOL ) The result was similar to what you will see with a weather satellite showing approaching hurricanes, etc. That was rather expensive (denied by insurance, of course) so I am glad they now have a cheaper and faster way to do the same thing.

Mike

[CZZ74]

Originally Posted by bassman

This may be similar. I often have the sensation that my sock is totally wet. I almost expect to see pools of blood pouring out when I remove my shoe. Of course, like you, it is always dry.

Regarding the thermometer test: When I was first diagnosed in the eighties, those temperature strips were either non-existent or not very accurate. The doctor used a thermal imaging camera to photograph the heat coming from my skin. (My only nude posing has been in doctor offices. Good thing, too! No one else would be interested. LOL ) The result was similar to what you will see with a weather satellite showing approaching hurricanes, etc. That was rather expensive (denied by insurance, of course) so I am glad they now have a cheaper and faster way to do the same thing.

Mike

Mike that was so funny, yes to date, the nude posing, on three different occasions now for the thermograph has been my only occassion too! awful wasnt it. I do am contanstly feeling a wet area somewhere on my body and am shocked to find out it is indeed "dry", mine might be on my back, leg or abdomen. thank you for posting that. cz

[CZZ74]

Originally Posted by loretta

Hi CZZ74, Thank you for the information. Sorry you have much cold pain. I alternate between Hot and Cold.

Does anyone ever have like trickling water running in their legs. I actually will take my hand and feel for running water down my leg, thinking I've had an accident of something. But it's always dry-just feels like running water down my leg? Anyone experience this, I would appreciate knowing, Thanks, loretta soft hugs

Loretta, you described this feelilng well. I have such a diffucult time trying to explain this sensation the one you are describing here and Mike below. i will be convincied that there is a rivulet runnning down byleg or back,two of my worst areas, and nothing, absolutely nothing. It si so bizarre. thanks , cz

[CZZ74]

Originally Posted by Imahotep

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

[CZZ74]

Originally Posted by GalenaFaolan

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