Temperature Sensitive

swearimavirgin · Posted: Mon Jun 30, 2008 9:51 am Post subject: Temperature Sensitive

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 · Posted: Mon Jun 30, 2008 10:58 am Post subject:

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.
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KathyW1958 · Grizzly Bear Joined: 12 Jun 2008 Posts: 714

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
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Lupus for many years. Like most of my life. Sjogrens that started at 35 and Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

Medications:
Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

Saysusie · Posted: Tue Jul 01, 2008 1:10 am Post subject:

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) Sad

Peace and Blessings
Saysusie
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Oluwa · Posted: Tue Jul 01, 2008 7:47 am Post subject:

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... Shocked

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.
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Saysusie · Posted: Tue Jul 01, 2008 11:01 am Post subject:

Oluwa;
I am so tired and running on fumes that I can't even form a thought to answer your questions Laughing

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
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laurid8967 · Posted: Tue Jul 01, 2008 1:40 pm Post subject:

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
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God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference...

swearimavirgin · Posted: Tue Jul 01, 2008 4:29 pm Post subject: Temperature Sensitive

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 · Not So Newbie Joined: 06 Jun 2008 Posts: 9

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 · Fierce Poodle Joined: 09 Nov 2007 Posts: 279

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 · Big Guppy Joined: 29 Oct 2007 Posts: 47 Location: PA

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 Confused

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 · Posted: Thu Jul 10, 2008 4:06 pm Post subject:

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.
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swearimavirgin · Posted: Fri Jul 11, 2008 11:30 am Post subject:

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 Smile

. 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 · Posted: Fri Jul 11, 2008 12:21 pm Post subject:

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
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God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference...

swearimavirgin · Posted: Fri Jul 11, 2008 4:36 pm Post subject:

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 Smile

! Take care hon!