Anyone have "hot" and "cold" rsd?
 

I was wondering if anyone out there had both hot and cold rsd. My foot and leg for the past year has mostly been differet shades of blue and purple and ice cold. Last night they were bright red and warmer than my other leg. Now this morning they are a reddish-purple(closer to my normal rsd color) but still warmer than my "good" leg. Ive seen people talk about warm or cold rsd but not both. Figure someone out there has had this happen

Maybe it's a flare-up? Might be if you have more pain than usual.

If not...

RSD is divided into 3 stages, stage one is called the hot stage, stage two is where you can go from hot to cold and back again (the colors sort of have a marbled effect too), and stage 3 is the cold stage. Not everyone's RSD follows these outlines, though.

I don't know as this is all so new to me. My hand and arm have always felt like they were on fire but the past wk I feel like a freezing bone pain,cold. My hand/arm go from red blotcy, purple to very white. It has spread up to my shoulder but the only swelling and discoloration I get is my hand and forearm.

I have rsd in my hands allthe wayup to my shoulders on both and i do feel the very to the point where i have to take off everything. Like now im very cold. I get the blocthes on my upper arm both sides...Usually that happens when im flaring really bad.

KS here..

I gotz to say..my dr. has said I have the most aggressive form of RSD he has ever treated and as far as temperature changes and differences..I am all over the map..hot one minute..cold the next.. I get so hot I turn into water but my feet could be cold..weird!! But ..we know RSD is such a treat..our thermostats are just screwed up... I can't aquaint a flare verses regular ole' RSD... all of the time.....

Hugz,Kathy:grouphug:

I too have both hot and cold at the same time and man it really gets bother some. From my head to my back I am as hot as I can be to where if I take my temp it is 100-101 degrees while my hands and from my knees to my feet are so ice cold that they are turning blue. I was told my circulation is just getting that bad. The weird thing that I notice is if I get my hands and feet to warm up then my mid-body will cool down. Have both and cold and hot I hate, I would rather have one or the other then I could either put on blankets or take them off, while having both I have cool packs on my back and head and have my legs and arms wrapped in blankets.

Niki

I have often stated that how can my foot "burn' and "freeze" at the same time! So ,yes I am right there with you-Carol

Hi. I am the same. I have generalized CRPS and my initial injured arm still turns purple and cold and my legs, feet and other arm usually turn red and hot, but the also turn cold and purple. It really thru me off when it first happened because i am so use to purple and cold. momof4

SO>>>>>
 

When is it called a "flare" as I can't tell the difference..Temp is all over constantly and never ends!! Help me... KS

Hello. I am new to this forum. I have RSD and it is nice to be able to have someone to relate to this problem. My RSD is in the left arm. The worst part is that horrid burning pain, but the cold and hot are bothersome too. Sometimes when I have a flare up the arm itself will turn its lovely blotchy red and purple color but the back around my shoulder blade will feel like I am on a heat pad. In the beginning I thought I was going crazy until my workers comp doctor showed me the etiology and what is going on. It scares people to look at my arm, let alone touch it because the temp is so cold.

I definitely have both. The hot is bad no doubt, but the cold is the worst for me. Nothing warms my foot up! No matter what I do, it remains cold to the very bone - like a frozen extremity that just refuses to thaw out. Drives me nuts!

Nope, not crazy...just RSD. At least two or three times a day, it feels as though my foot and leg are being blown up by a hot air balloon. To this day I still check to see if it is swollen, but it is not, quite the contrary it is purple, small and feels like ice. I have to administer heat to it instantly, sometimes I can actually stop a flare up if I get to it fast enough.

It is normal for me, however, you need to watch for trigger points for the cold extremity, the hot I do not worry so much about but the cold still concerns me.

And Welcome to neurotalk, this is a great group of people who share the same illess with many different ideas and support.

God Bless

Jeanie

hot and cold crps
 

yes! I feel the burning in my foot and leg but I can't tell when my foot or leg is cold only from the intense pain. :mad:

Yippee dang skippee.... It's KS here...

As best I can tell we must all look the same..as hot/ cold.. cold/then hot... after reading our posts... we validate eachother that is for sure!!! Oh weeee doggies..get us all in one room..what a great group we would make... That would be the best sight in a very long time..but we would be happy cuz we all have eachother to support..lend an ear and noone would feel like they were not being understood and felt compassion for their RSD as we are all the same..Would that not be the BEST????????? We would not invite anyone who was not lucky enough to have the same fruits of RSD!! Except those who have been a bit less compassionate and non sensitive to us all..to all of them I say...here take a sip from my RSD cup!!!!

Hugz everyone!! Kathy:grouphug::grouphug::grouphug:

Hi Geronimo and welcome to neurotalk. I'm sorry you have this disorder. I have both hot and cold rsd.The sympathetic nervous system controls temperature, circulation, immune system, involuntary organs like the heart, lungs, kidneys. The sympathetic nervous system can cause high blood pressure and the para sympathetic nervous system can cause low blood pressure, which if gets too low can pass out, which happened to me. We can be burning up or freezing cold. The skin can be pink to reddish blue -hot or ice cold. There is a website with a lot of information from a Florida Dr. He is retired, but has his website up It's rsd.rx Go to puzzles and there are 146 puzzles or questions and his answers.
RSD can also cause problems for internal organs. I've had this 15 years, full body or generalized now and internal organs. It can effect the eyes, ears, skin conditions, lesions, teeth,mouth. This website explains this and the hot and cold question you have.
Hope the best for you, your friend,, loretta

I have rsd in my arms and back and they are always HOT, but i notice that my feet are ALWAYS freezzzzing cold. Nothing warms them up... I tried an infarared sauna and while I am in there they begin to defrost after 30 mins, but by then I need to get out... So i am back to cold feet. If i lay on the couch with someone and my feet touch them they usually go eesh why are your feet sooo cold?!?!? and i dotn even have rsd in my feet!!!

HOT? Cold
 

:confused:Oh yes and what fun it isn"t gee welcome to the world and state of a body that is in a total stale of confusion But I have come to realize that if it was not for all these strange little cotraditons I would have a almost normal Life again.:Demonstration:

yes mine does that too
 

yes I was crushed inbetween two high low 5and half months ago and in beging mine was hot red swellon and shinny, then turned cold purple/blue color and stayed that way for some time now the last 2 weeks back to the hot red and shinny and swellon, now today its cold and purple yes wondering the same thing what does this mean??

I don't know if there is an official definition for flare. My thinking is that first there is the "norm" or what is normally happening. This is how you feel most of the time. For each of us it is different. When my meds are adjusted correctly, I run along at about a 5 or 6 on a pain scale of 10. I know what typical sensations to expect. That is my “norm.”

When I experience what I call a "flare" (short for flare-up, a term used by fire fighters when battling a building fire - you can picture what it means there) my pain level might jump to 9 or 10. I might get localized sharp pain like a harpoon or a dagger in my leg. Others might get a severe increase in temperature, which would correlate nicely with the firefighter’s terminology.

If you say your temp is all over constantly...you are either getting a LOT of flares or your doctors still have not found the right medication cocktail to help you get that steady 5 or 6 pain level like I have. In other words, you don’t have that nice, steady “norm” I was referring to. I really hope you could achieve that. It doesn't sound like too much fun, but it seems better than wild fluctuations!

I really wish you the best.

Gentle hug :hug:

Mike

Thank you for that , Mike...

I think I am in constant flare, which explain the agressiveness of my RSD..See that burning building thing, I call it hot glass..deep burning.. at the level of 8-9 in all of the time for me... for the last 3 years..as far as a med cocktail..that is not possible for me as my tummy won't allow any cocktail to stay in there...so I cold turkey it...Which I think makes me try to be the forever optimist and simply say..I must make the best of it now as RSD sure likes me..I don't like it much but it is trying to pursade me to be it's friend..I don't want to budge on that....

I am happy for your info. just the same and I hope you have a great day..

Kathy

Does anyone have both "hot" and "cold" RSD?
 

Yes - there are two types of RSD, hot and cold, and a doctor will feel your extremity on examination and compare your RSD impacted extremity to your normal extremity for differences.

I have seen this used for two purposes. First, I have seen the difference in temperature change used to diagnose RSD. In my case, my impacted right extremeties became extremely cold upon the onset of RSD. The neurologist used this differential as input to her diagnosis.

Secondly, I have seen the difference in temperature change used to diagnose the effectiveness of Stellate Ganglion Blocks. Following each Stellate Ganglion Block for my right arm, the neurologist evaluated the temperature of my right arm as one criteria as to whether the block had "taken". Each time, the temperature increased. She told me that we knew that the RSD in my arm was sympathetically mediated.

When my RSD spread to my right leg, I also had "cold" RSD. However, following my blocks, there was no temperature change. This, among other inputs, led my neurologist to conclude that the RSD in my leg was not sympathetically mediated. Sadly, this eliminated blocks as a treatment option.

It's interesting - temperature can be a useful diagnostic tool and treatment tool for us. Hope my experience is helpful to you. Many well wishes.

Hi geronimo,

Welcome to the forum, I'm sorry that we meet under these circumstances. Initially I had hot rsd, then after the couple of months it turned to be ice cold and I could never be warm enough. I've had Rsd now for 8 years. This past winter my hormones went off balance due to perimenopause possibly menopause. Suddenly I have had extreme hot flashes (like every 15 minutes)and can't seem to be cool enough. My foot/leg now goes bright hot red compared to the old cold & purple. From one extreme to the other LOL. I'm working on the diet side things to try to get things back in balance but it takes a lot of patience. Hormone replacement has been good so far but for me it seems that the RSD throws off my hormones more than I initially understood. I try to be fully conscious of my daily choices and all that that entails. I don't know if that relates to where you are at in your life cycle but that's been my experience to date.


Warm or wishes.

MsL