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swearimavirgin
06-30-2008, 10:51 AM
Hi all-
We all know that with Lupus...just about anything goes. Do any of you ever have temperature sensitive skin? I'm not sure how to describe it any other way. Here's how it happens to me - It usually occurs on the back of my upper legs. I notice it when I sit on the toilet or even on my leather couch. It seems if some surface is cold and it touches my upper legs, it is actually quite painful. This doesn't happen often...maybe a few times a year but can last for many days at a time.
Just wondering...Thanks!

sits_inthe_corner
06-30-2008, 11:58 AM
I have no tolerance for cold. Like you....it hurts. My skin feels almost bruised and the only wrong is that it's cold.

I'm not sure if my medications make me more sensative, but I have always truely minded cold things.

I'd rather be sweating to death then be cold.

KathyW1958
06-30-2008, 01:02 PM
Hi all
I too have an intolerance to severe temperature changes. When it is cold outside my feet hurt terribly and they go numb. I can not stand to put my hands in cold water as that is a very painful experience as well. It is the same way with hot water. I have a bad time when it is hot or cold outside. To me I am very much affected by both hot and cold and have been for years.

Kathy

Saysusie
07-01-2008, 02:10 AM
I have Raynaud's Syndrome, so I am extremely intolerant of cold. It is so painful, even in the heat of summer, my extremities are cold (especially my feet) :(

Peace and Blessings
Saysusie

Oluwa
07-01-2008, 08:47 AM
What is it when you are extremely sensitive to heat at times, not always. Times I swear the warm to hot water burned my skin off....or at least a blister. Nope. Sheeesh... not even red... :shock:

I wonder if what I think is the hot pain is actually cold pain or just physically hypersensitive. I am hypersensitive, an empath...any connection or just IT? Hummm

Silly tired...running on empty.


L.,
O.

Saysusie
07-01-2008, 12:01 PM
Oluwa;
I am so tired and running on fumes that I can't even form a thought to answer your questions :lol: Anyway, I've put my hands in cold water and swore that it was scalding and visa versa! So, I think that we are hypersensitive to temperatures!!

Peace and Blessings
Saysusie

laurid8967
07-01-2008, 02:40 PM
My body goes crazy back and forth too - have Raynauds. I remember once my hubby and I were in a giant hot tub/spa on vacation and after a little while I was FROZEN with pain from the cold air!!! I was literally crying...
I usually love the heat, but this year it almost makes me physically ill - not just sun, but heat...I think the steroids contribute to that as well as I just perspire like crazy!! So , lol, this summer has been spent running around - closing all the windows and putting on the AC, then a half hour later, running around opening them back up and turning the AC off because Im FREEZING!! I hate the cold!!! Good thing I live in New England - lol...
aahhh...I have a patient family...lol

swearimavirgin
07-01-2008, 05:29 PM
Thanks everyone for your replies! It seems that so many different things bother me...I even hate sometimes telling my husband of these new, unusual symptoms I'm having. He's definitely a trooper! I am also one of those 'freezing one minute, burning up the next' people. It's exhausting trying to keep the temp adjusted on a daily basis in my home.
Take care all and thanks again!

Goldee
07-09-2008, 04:55 PM
I'm very sensitive to temperature too. Just getting into a hot car gives me a horrible headache. I can't do any outdoor activities in the summer because the heat just knocks me out. The winter is just as bad too. I guess I have Raynaud's because my feet and hands get soooo cold that it makes me miserably uncomfortable.

NoodleMom
07-09-2008, 05:08 PM
Sensitive to high heat and hot water and the cold weather. The cold water doesnt cause me problems at this time.
I do not tolerate high heat. I wilt to a puddle of nothingness. Physically so drained. I like my AC.

Hot water hurts me and then my skin is so dry and itchy. Takes days to recover. This is a bummer as hot baths used to the one thing that would relieve some muscle and joint pain.

The cold weather is hard as it hurts in my bones. Catches me coming and going this temperature thing.

Kasey

lornak
07-10-2008, 03:33 PM
thank goodness---I thought that I was the only one or something was really wrong. I cant stand the heat anymore. even if I go out to take the cloths off the line I feel like a vampire :? my skin started to hurt and feels like its burning. head starts to hurt and I get dizzy. I go running into the house and think to myself that the neighbors must really think I lost what little mind I had.

rob
07-10-2008, 05:06 PM
I'm temperature sensitive too. Any water above 80-85 degrees feels like I am being scalded. It literally feels as though I am being burned, and is really painful. I used to be a person who loved soaking in the jacuzzi, but I had to stop because it hurts. Even at a tolerable temp, the bubbles feel like pins and needles. I also can't tolerate outdoor temps much above 75-80. I will start sweating uncontrollably, and it does not stop even inside in front of the A/C unit for a couple hours. It's followed by a terrible headache similar to what you feel from heat exhaustion and dehydration. I can drink gallons of water, yet I'm still dry. I was miserable my last year in Arizona. The temps in Maine are far more tolerable. Luckily, I don't have much discomfort from the cold. In fact, it feels good. I'm always too warm it seems like. Oh well, such is the weirdness of Lupus I guess.

swearimavirgin
07-11-2008, 12:30 PM
Hi all:
As I started this post and starting watching replies I wonder...is there any link between Lupus and this Raynaud's that people have been talking about? I know that a lot of people with Lupus also suffer from fibromyalgia...so I was just wondering if there was any link. I live in the south and we constantly have triple digit temps in the summer and then add in the humidity...watch out! When I have to run errands they are either done before 11 am or after 6 pm. I just avoid any time in between. I just hate that I can't even open my shades anymore. I have noticed that the lesions on my face have gotten better in the past month since my derm. told me to keep them closed. I know people in my neighborhood think I'm some weird cat lady...without the cat :) . My skin also tingles when I have to run the trash out or check my mail. I think that since I avoid the sun so much that my skin freaks out and thinks 'what is this new thing?' I have definitely converted to a winter-loving person.
P.S. I just can't keep thanking you all enough. I have lived with Lupus for 9 years and have so many weird things that go on with my body that I just hate even mentioning them to my family anymore. Since I found this site and started chatting with you guys, I have felt so much better. Just having someone to talk to about all this stuff helps. Thanks again!

laurid8967
07-11-2008, 01:21 PM
Hi Swear -
Yes, Raynauds is one of many conditions associated with lupus - they occur commonly together. Im not sure if its with ALL autoimmune (I think I read that it is), but I know, for sure, its associated with lupus. As a matter of fact, most every rheumie Ive been to asks me if I have it (or asks me if my fingers turn color in the cold, etc).
There are SO MANY things that tag along with IT, isnt there? I said in another post how much WE know this more than the doctors!! We need to start some sort of "symptom awareness" campaign or something. Or start a symptom "petition" that we can all sign and CC to all of our docs that say "No, thats not related to lupus"...
Lauri

swearimavirgin
07-11-2008, 05:36 PM
Lauri:
You are so right! I can't get a straight answer from docs about the weird symptoms I have (way too many to list) With Lupus sufferers...ANYTHING absolutely goes with our condition. I think I actually might have some symptoms of Raynauds (hope the spelling is right) :wink: I definitely think we know more than some doctors about our condition. Me just speaking from experiences I've had with the many docs I've seen over the last 9 years. Thanks so much for the input :) ! Take care hon!

laurid8967
07-11-2008, 06:40 PM
No problem - You know, thank God we can all laugh about how clueless our doctors are, but in all seriousness - something has to be done. I dont understand how SO MANY PEOPLE could have experienced the SAME THINGS, yet they are considered NOT to be symptoms, or "in our head"...I just dont get it.
There is a desperate need out there for some research. I have read that its difficult because no two patients are the same (diff symptoms at diff times, etc), but c'mon...there are ALOT of people with this disease!! They should know MUCH more than what they do. OK, Im getting angry...lol. Maybe thats God's plan for me...to help fund research for this craziness...
Maybe time for beddie bye for me!! lol
Good night friends...
Lauri

AnnMarie
07-12-2008, 06:09 AM
Hi,
Yes I have raynauds also,but 13 years ago when I first had problem with my immune system I would go from hot to cold. It would be 10 degrees outside and my work partner would have to stop the car so I could get outside and cool myself down. It was as if my internal thermometer was bouncing from high to low. My doctor could not give an explanation for it.

Now, I just have the coldness in my extremities. Not the severe extremes of hot to cold. Even though it is summer where i live, if my feet get cold, the only thing I can do to stop the chill is to take a warm shower. If I do not, they get numb and it is hard to walk.

Wishing you wellness,
ann

Faith
07-15-2008, 09:26 PM
Hi Swear,

I was diagnosed with Lupus 2 years ago, then Fibromyalgia a year ago last October, Sjogrens this last February, recently neuropathy (cold feet all the time) and now Antiphospholipid Syndrome this month :( . Lots of headaches/migranes, sensitive to white computer screens; my eyes hurt, and lately lightheadedness. I experienced Raynaud's this last December; toes and fingers tingling and then numbness. Putting them in warm water scalded them.

The cold is miserable for my fibro, and the heat is miserable for Sjogrens and Lupus, and I feel like Rob. I am walking in a desert thirsting for water and can't seem to get enough, overheated, red faced, can't cool down at all. Sun causes headaches and my body feels hot, sweat like there is no tomorrow. I don't think there is really a happy medium; unfortunately.

My rhuemy stated that once you have one auto-immune, you have a 40-60% chance of gaining another. It's not fun by any means, but you just have to keep on going. Though admittedly, I am running in slow mode with no energy. I feel for those on this panel that have to deal with the humidity; we have some but not probably not nearly what the south and eastern states have. You are not alone, there are a lot of weird things that pop up with Lupus and associated auto-immunes.

Take care,

Faith :lol: