Heat Sensitivity

• By OkieTokie (Inactive)
• Reply 381011
• May 9, 2009 at 3:22 pm
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I hate the heat.
The heat sucks.
Direct sunshine kicks my butt faster, but being out in a high (85 Degrees+) and high humidity (60%+) shade just sucks the will to live out of me.

It is nothing for me to spend 10 days inside my house.
I look at the sunshine through a northern facing window. It is pretty. My cats like it.

Luckily, I can afford electronic toys to pass the time.
Cable TV, Broadband, Nationwide cell service.
I am truly a virtual friend.

I was lucky to have been forced to learn about computers while in the USAF (1980's) and complained about being a bean counters counter. However, when I found that the Management Information Systems was just in it's infancy and mainly crytographic smart females were the enlisted troops who cross-trained into the field, I was more interested.

Made it a career after separating. Made a lot of money in the Y2K cluster-bump. Retired right after that.
Getting Short of breath when sitting in front of a keyboard is a sign that things need to be looked at.

Retired from working (what else?) and started the long search of what was making me have all these crappy little things going on. Shingles, Lyme Disease, Pneumonia, Severe Allergic Rhinitis, kidney stones, gall bladder, rat-poo and bat-poo.

Finally was dx with sarcoidosis about 3 months ago.
Fraid it is too late to inprove much.
I am a lazy bastard anyhow.
This is a good excuse to show even more natural talent in the fields of slot and gluttony. Not so much lusting anymore. Used to be a luster AND a coveter.

Now I am trying to figure out who to give all my lusted after and coveted possessions to. Who would really appreciate a samuri sword that was stolen from a Geisha house in Tokyo while on R&R from SE Asia.
This is the type of mind-farts that I spend my time thinking about. Is live good or what?

Got carried away.
My fingers were just flying across the screen.
I own this machine.
It is my bee atch.

Maybe I took a double dose of prednisone this AM.
That would explain a lot, lot, lot,,,,,

Party on,
OkieTokie
aka OT

• By OkieTokie (Inactive)
• Reply 381017
• May 9, 2009 at 3:36 pm
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AND why is being able to detect heat sensivity in ms any different that me in ok or That Dude in tx?
There should be no heat descrimination between states. ESPECIALLY when sarcoid is being spoken.

What?
Multiple Sch what?
Never mind....
disregard this message.

Heat sucks.

• By Teacherteacher
• Reply 381247
• May 9, 2009 at 7:47 pm
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I started with neuro symptoms that had the docs searching for MS. Nope, according to the docs at the Mayo Clinic and at Scripps everything can be explained by sarc. It just doesn't always show up large enough to be measured by scans or to be found with biopsies. Treat the symptoms, avoid what ails you, heat, humidity-yuck!

• By ANGELGIRL1970
• Reply 381315
• May 9, 2009 at 8:58 pm
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Goodnight Ocean27,

I have my hands raised for that question. I mentioned in one of my earlier post that whenever i drink something hot or at times eat something that is hot i feel heat underneathe my eye lids.

At first i though it was my imagination, or that i was paranoid, but then i tried drinking hot tea, and wham there it was. I was saying to myself :What the hell is going on?" It is a worrisome feeling and scary because it seems as if my body is all out of sync.

• By spiraldreamer
• Reply 381422
• May 9, 2009 at 11:13 pm
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From what I've read, Sarc affects the hypothalamus, which amongst other things, is the temperature control center of the body. It's why Sarc patients typically run a below average temperature (mine is 97.7), and why we often have heat issues. The sun is an entirely different issue - except in that it produces heat - LOL. As we all know, the sun causes our skin to produce Vitamin D, which we are all very sensitive to.

But yes, I have been extremely heat intolerant for years now. I did get the sweats (as in night) some years back, but that hasn't bothered me lately. I perspire very easily when I'm warm. But I always seem to be hot when everyone around me is quite comfortable. And if I'm comfortable, everyone else is freezing. I never hear the end of it.

• By priscurl
• Reply 381507
• May 10, 2009 at 5:11 am
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Sarcoid tissue produces HSP or heat shock proteins. Most people with Autoimmune illness suffer from the heat. I am at my sickest in summer and recover over winter. Nearly every summer I have a sarc attack and that is when my D levels climb to their highest levels. People with active sarc cannot control D and calcium levels adequately, therefore consistently being in the sun and uncovered (i.e. like a roofer for instance or sunbather) or taking vitamin D supplements or fish oil will make you ill quite quickly. Keep out of the sun. The summer sun plays merry hell with sarcoid.
Note I say active sarcoid. Summer sun can also activate sarcoid.
Pris

• By OkieTokie (Inactive)
• Reply 381514
• May 10, 2009 at 6:14 am
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What a great place to learn about things and stuff.

Nobody has ever been able to explain why my NORMAL temp is 97.5

OR why I whine like a little ballerina when I have to go outside when the sun in visible.

OR the sweating and not being able to wear pretty wool thingies because they make me sweat and then I smell like a wet sheep. Being followed around by hillbillies on the scent of a sheep in heat is not a good thing. Explains that guy who drinks woolite who is always hanging around the laundry isle at walmart.

You sick sarcs are giving me a will to live.
Understanding what is killing me gives me a reason to go on living and ranting and bitching and moaning and things and stuff.

Party on,
ot

• By pamk
• Reply 381590
• May 10, 2009 at 9:15 am
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I always find it interesting when these doctors give these blanket statements like heat sensitivity is not found in sarc. I had a dr recently tell me that sarc does not cause muscle or bone pain. I don't know where they come up with these statments and say it with such conviction? I have stopped believing that just because someone has MD at the end of their name they know more than I do about sarc. I really love it when they tell you not to read about it on the internet. I realize everything on the internet is not true but I have learned a heck of alot more on this site than from any dr I have ever seen.

• By mbeth059
• Reply 381878
• May 10, 2009 at 2:34 pm
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Hi all,
Hey, the temperature thing.....I seem to have always had a lower than 'normal' temp., so when I go to the doctor complaining of something and feeling like I'm running a temperature, they look at my temp. and tell me it's normal, but can mostly tell them 'No, it's a low-grade temperature' and I feel much warmer than normal. One doctor was impressed with my medical jargen 'low-grade temp.'.....yea, really! I kinda think that since maybe us Sarckies run a lower-than-normal body temperature, making it harder to fight off germs and viruses.....and I feel like Sarcoidosis and other 'Auto-immune' diseases are caused by germs and viruses that go 'unseen' by the scientists out there. After all....aren't granulomas our bodies way of 'surrounding' foreign bodies like germs, to protect us from them? Priscurl....you usually know a lot about such things. Any opinion here?

• By ocean27
• Reply 383136
• May 11, 2009 at 5:59 pm
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For the first time, I fel like I am not alone. I have always had a low grade fever and family gets mad at me when they have to put sweatpants on in the summer or I open the door to the outside in the winter. Has anyone ever tried the neck wraps that you run under cold water and it stays cold? My doc wants me to get a cooling jacket, but I am all set with looking like a Star Wars character, even though I am fan of the movies. Does anyone have any tricks of the trade to get them through the body heat?

• By OkieTokie (Inactive)
• Reply 383161
• May 11, 2009 at 6:21 pm
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First I turn on a fan.
The moving air across the skin cools well.

• By OkieTokie (Inactive)
• Reply 383163 · In reply to 383161 by OkieTokie
• May 11, 2009 at 6:26 pm
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Stupid post button was where the edit button was supposed to be.
Stupid buttons.

Now, if the fan don't cool enough, I will turn on the AC. Even in the winter.

My SSU (Supervisory Spousal Unit) is always cold. I bought her a heated throw for each room, and an electric mattress pad for her bed. I also got her a electric throw that plugs to the car DC plug.

If she is cold, that is her fault.
YOU HEAR THAT ALICE??
YOUR FAULT!!

I'm typing too fast.
Starting to sweat between my fingers.

party on
ot

• By IreneMarie
• Reply 383417
• May 11, 2009 at 10:36 pm
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Okie - your are a gas! :) :0 (lofl)

Now I know why our house ended up with ceiling fans in every room! I even carry a small oriental fold-up and have a fan on a stand in the cellar for breaks from gardening. Little clip-on fans in the bathrooms and even in the laundry room.

My nik name should be Fanny (cause I also sit while I'm gardening:)

Would you believe I worked third shift for 30 yrs because they used to keep it ice cold at night (the shift diff. was equally cool).

I must have had Sarc for years before all the other good stuff started to happen - just thought hating heat ran in the family.

• By 42many
• Reply 383554
• May 12, 2009 at 3:51 am
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I was a lizard...loved lying in the sun for hours on end. Moved to Florida on purpose!
Then started getting very sick from heat and/or sun. I have always had a low body temp, even when strep positive.
Being an extremely loving and generous wife/mother, I bought my family robes, slippers and throws. My thermostat stays set at 60 degrees. If momma ain't happy, ain't nobody happy...;)
I have also spent my adult life in pursuit of 20 watt bulbs. I currently am thrilled tohave found red bulbs at christmas and rotate every other one in fixtures. It cuts the glare which is another thing I've come to hate about the sun/summer.My eyes run and twitch from bright light.
I get flushing and night sweats. Have for years now. Backin the northwest and relieved to be getting seasonal relief from heat. The sun also makes my EN break out worse...almost instant leg rash which dampens the mood at our community pool. My neighbors want to send me to a leper colony.
Maybe gardener should start selling shirts or caps that say "My family hopes this rash is not contagious, too"?

• By grannylunatic
• Reply 383603
• May 12, 2009 at 7:17 am
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Yes I do! I dread summer because my air conditioning bills are double my heat bills. I have neurosarc. I believe your doctors are wrong! I have talked with other sarc patients that suffer from the heat too.

• By kaths
• Reply 384134
• May 12, 2009 at 2:21 pm
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I have neurosarc since 1996 have had night sweats they come on fast and leave then there is like a electricity flowing in my arms come and go at night I just deal with it dr don't care long as I'm breathinglol. I am on Methotrexate 4 tablets once a week seems to control my lt headedness. Sun makes me feel lt headed and tired quickly. Starting to get cramps on sides doen't last long but hurts .must be from siting to much so am trying to do a little gardening. good luck tgo all

• By PurpleSnowflake
• Reply 384265
• May 12, 2009 at 3:58 pm
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I actually have the opposite problem. I feel better in the summer and worst in the winter. I hate to be cold and I am very intolerable to cold weather. If I get cold it takes hours to warm myself back up. Anyone else have this problem?

• By Krissy
• Reply 384281
• May 12, 2009 at 4:15 pm
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Hey PurpleSnowflake, I'm with you! I do get temperature spikes though. I guess because I haven't got the vitamin D issue I don't have a problem with the sun.

• By drjjpdc
• Reply 384391
• May 12, 2009 at 6:11 pm
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OK guys since I have had NS for a while that took forever to get diagnosed, here's the deal with flushing and sweating. Any auto-immune disease makes your body weaker and less able to withstand stress (temperature hot/cold). Prednisone also causes flushing.
If you have NS, it loves the pituitary stalk and hypothalamus, which also controls body temp. If you're lucky enough like me to have all your hormones screwed up (including female ones like LH and FSH), then you get hot flashes as well. That's what I get for all those male chauvinist jokes when I was younger. Lastly if you are even luckier to have your thyroid affected (which controls your metabolism), then more weakness and temperature disturbances occur well. And I have not even begun to go into your major stress gland, the adrenals, which all of us on prednisone know well!

• By diamondgirl01
• Reply 386220
• May 14, 2009 at 3:19 am
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I've never been so happy to hear about getting hot flashes....I have had this problem really bad for about 6 yrs. and goes back before diagnosis to about 10 yrs. ago of hot flashes. You can't tell me this has been all female related! I also have thyroid disease and I am so confused, I don't know what is caused by what. I just know I have a horrible intollerance to heat and drive my family crazy with the fans and the air conditioner....and forget it at night! I wake up all night with those night sweats. And if I am ever in a hurry to go anywhere and am getting ready to go to work....it always happens then. And about 11-15 yrs. ago I was always cold. But you all are right, I have always had a sub-normal temp. along with a low blood pressure. I guess that is normal for S.