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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 12-27-2012, 05:28 PM   #1
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Hot/cold

Can RSD make your whole body feel hot and cold?
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Right ankle lateral ankle stabilization with ankle arthroscopy and debridement, curettage and microfracture of the lateral talar dome lesion. Possible RSD of right ankle
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Old 12-27-2012, 05:49 PM   #2
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Smile Re: Hot/cold

hi, i have alot of trouble with this myself. My body cannot seem to regulate itself anymore, but with the research i've been doing, it seems some rsd patients suffer with this. There is information on the web, but not nearly enough it seems for us who have tons of questions about this disorder and doctors don' t seem to have any answers either as all rsd patients are different and experience their rsd uniquely. I am freezing when i get up in the morning and have to sit in the sun like a cat with my blanket, then it's like someome turned on a switch and i've gotten so hot i need to shed a few layers. I's like this all day long. so hard to dress for the weather. I'm only 6 months out so i'm still new and don't know what to expect. I wish you all the best and good luck...hugs.

 
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Old 12-27-2012, 05:57 PM   #3
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Smile Re: Hot/cold

hi, i have alot of trouble with this myself. My body cannot seem to regulate itself anymore, but with the research i've been doing, it seems some rsd patients suffer with this. There is information on the web, but not nearly enough it seems for us who have tons of questions about this disorder and doctors don' t seem to have any answers either as all rsd patients are different and experience their rsd uniquely. I am freezing when i get up in the morning and have to sit in the sun like a cat with my blanket, then it's like someome turned on a switch and i've gotten so hot i need to shed a few layers. I's like this all day long. so hard to dress for the weather. I'm only 6 months out so i'm still new and don't know what to expect. I wish you all the best and good luck...hugs.

 
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Old 12-27-2012, 06:37 PM   #4
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Re: Hot/cold

I hope to see a dr soon to determine if I have RSD but my OS feels certain I do, I'm always to hot or to cold. It's frustrating.
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Right ankle lateral ankle stabilization with ankle arthroscopy and debridement, curettage and microfracture of the lateral talar dome lesion. Possible RSD of right ankle
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Old 01-06-2013, 10:33 AM   #5
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Re: Hot/cold

I had to laugh at the post about sitting in the sun like a cat to warm up. My husband has had RSD since Feburary of 2009 (knee surgery) and that is what he is doing right now. We live in MN and when the temp gets below 20 degrees it is almost impossible to get him to leave the house. He takes alot of baths to try to warm up but sometimes warm water can feel boiling hot to him. I do not think the temp sensitivity has ever gone away but medication (Gabapentin) does help. He also uses a compounded cream that he can rub all over his leg for the pain and sensitivity to anything touching his leg.

 
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Old 01-21-2013, 07:11 AM   #6
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Re: Hot/cold

I tend to be cold all the time. And like previous poster said, even warm water feels scalding hot on my affected legs, but I'm fine with the same temp water touching my hands. Go figure?

 
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Old 01-22-2013, 06:25 PM   #7
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Re: Hot/cold

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Originally Posted by loki2012 View Post
Can RSD make your whole body feel hot and cold?
Yes it can. I've read many post on it. Most of my hot/cold sensations comes from my right ankle/foot/lower leg but then my whole right side will get that sensation. I haven't been able to find any help with this. If you do please post it.

 
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Old 01-29-2013, 05:29 PM   #8
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Re: Hot/cold

Can relate to the hot and or cold temperatures. Because crps/rsd is a disregulation of the autonomic nervous system, it explains why we can go from hot to ice cold. I looked up autonomic nervous system online and it explains it very well. Besides going from hot to cold, it also explains how are blood pressure and heart rate are also affected. They sympathetic and parasympathetic nervous system control pressure and heart rate. I suffer from high blood pressure, but can also get low blood pressure and low heart rate and get syncope or pass out. Just understanding this helps me know what's going on. darlene

 
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Old 01-29-2013, 06:21 PM   #9
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Darlene that is great information. It really explains a lot. My dr had to increase my blood pressure meds and I had to start Viagra this stupid condition is causing soooo many other issues besides just the daily pain . I'm hoping & praying that someone somewhere can get us some help one day.

 
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Old 01-29-2013, 10:15 PM   #10
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Re: Hot/cold

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Darlene that is great information. It really explains a lot. My dr had to increase my blood pressure meds and I had to start Viagra this stupid condition is causing soooo many other issues besides just the daily pain . I'm hoping & praying that someone somewhere can get us some help one day.
Johnathan, thanks, it really helped me to understand more what was happening to my body. 'autonomic nervous system' 'sympathetic nervous sytem' parasympathetic nervous system, 'vegas nerve' online really helped me understand. not only does these systems regulate our body temperature-hot vs cold, heart rate, high vs low , blood pressure, high vs low. these areas can swing wildly- it's the flight or fight response in our body. why also we experience anxiety with this disorder. also affects digestive tract-slows it down. it explains why it affects the 'personal' areas of our body. there is a chart online when you look up these words.

Last edited by darlene3431; 01-29-2013 at 10:16 PM.

 
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Old 01-29-2013, 10:24 PM   #11
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Re: Hot/cold

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Originally Posted by JohnathanM View Post
Darlene that is great information. It really explains a lot. My dr had to increase my blood pressure meds and I had to start Viagra this stupid condition is causing soooo many other issues besides just the daily pain . I'm hoping & praying that someone somewhere can get us some help one day.
Johnathan- just a thought- I also had to increase blood pressure meds, but I have to be careful as I also can drop in blood pressure. So I bought a blood pressure kit at costco for like $40. My blood pressure can drop in a major way, where I have passed out on a few occassions. The heart rate can also wildly vary. It is vasovagal syncope- the autonomic part of our system. darlene

 
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Old 01-29-2013, 10:32 PM   #12
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That is great. Ill check it out. Thank you again

 
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Old 02-01-2013, 06:51 PM   #13
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Re: Hot/cold

To keep my ankle and foot warm, I have crocheted an ankle warmer that I wear every day along with wool stocks that are soft to the touch. Smart wool is a good brand but can wear out fast but there are other kinds of wool socks that can work too. I also always keep moving my foot to keep the blood circlulating to help with the cold. One of my dr's told me to keep my foot moving as much as possible to slow down any progression. I think it has helped. I live in Michigan also cold right now. Which is why I am on the site right now trying to reach out and get some support. Hugs to everyone!

 
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Old 02-01-2013, 07:29 PM   #14
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Quote:
Originally Posted by BeckyCampgurl View Post
To keep my ankle and foot warm, I have crocheted an ankle warmer that I wear every day along with wool stocks that are soft to the touch. Smart wool is a good brand but can wear out fast but there are other kinds of wool socks that can work too. I also always keep moving my foot to keep the blood circlulating to help with the cold. One of my dr's told me to keep my foot moving as much as possible to slow down any progression. I think it has helped. I live in Michigan also cold right now. Which is why I am on the site right now trying to reach out and get some support. Hugs to everyone!


That would be great but anything touching my lower leg, foot or ankle hurts A LOT so how do you manage to put the ankle warmer & wool socks on?

 
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Old 02-02-2013, 06:12 AM   #15
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Re: Hot/cold

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That would be great but anything touching my lower leg, foot or ankle hurts A LOT so how do you manage to put the ankle warmer & wool socks on?
I went through a lot of different socks to find out what worked to help with the extreme sensations and pain. Maybe try a loose fitting fleece on your leg that is sewed to fit your foot/leg? My pain is now finally at a manageable level. I had to do a lot of desensatization with my foot and PT to get it where it is now. I just know that keeping my feet/ankle warm, helps the pain and cold feelings tremendously otherwise i'm in burning pain all of the time when the foot is cold. The merino wool seems to be the softest. The best shoe that i wore for a long time was a bigger sized crock. Those shoes were a life saver! Keep trying different things, don't give up. Keep yourself active so the RSD has a hard time settling in. It hurts to move but keep the leg active. I hope this helps.

 
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