Temperature problems?

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Regular Member

Date Joined May 2014
Total Posts : 31
   Posted 5/23/2014 3:15 PM (GMT -6)   
Hey guys, I just want to start out by saying you guys are really helping me through a lot. It's weird having things happen to you and not knowing if they aren't normal or 'in your head'.

So I know a lot of people with lupus have cold hands/feet or general coldness. Mine is the opposite, I don't take my temperature very often but it's almost ALWAYS normal unless I'm very ills with strep or flu. I am always hot, always overheated. I live in Northern Utah so it's pretty cold here in the winter and pretty hot in the summer. I spend the entire winter with my bedroom window open and my vent shut (so no hot air gets in) because I CANNOT sleep if the room is over 60 degrees. It's summer now and it's not super hot yet so we haven't turned the AC on yet, I leave the window wide open at night and have to take ice packs with me to bed to be able to go to sleep.

Does anyone have this constant heat problem? Mine is not 'new' but the extent of it is new to this year, I've never spent winter with the windows open before, and i've never had to take ice packs to bed.

This is a problem as I want to wear more covered up clothing outside the house but i just get so hot. Last thing, do you think sleeping with ice packs could hurt me in any way? I set one by my feet and hug one to my chest right by my heart. Could that be hurting my heart in any way? I have a very high resting heart rate and I think maybe the ice pack could help slow it to where I can fall asleep more easily.

Thanks All

Regular Member

Date Joined Jan 2013
Total Posts : 62
   Posted 5/23/2014 4:45 PM (GMT -6)   
Hi Maddi,

I used to be hot all of the time - spent winter nights with all windows open, fans blowing, sleeping in all cotton under one sheet while my husband was under a pile of comforters - Now my body just goes hot and cold based on nothing and I've learned to carry a heavy sweater as well as a light one.

During the summer (well, year round) I wear long thin maxi skirts with cardigans made of the same light cotton, with HUGE sunglasses and sunhats - CouchTater can tell you about clothes if you're photosensitive (I'm not).
Laura aka tenXmom
AI Hep - AI Pancreatis - Lupus - RA & Osteoarthritis - Reynaud's - Fibro - AIED - TMJ - Sjogren's - and whatever is going on with the gallbladder...

Regular Member

Date Joined May 2014
Total Posts : 31
   Posted 5/23/2014 5:43 PM (GMT -6)   
I am photosensitive it seems, I've been looking at some of the places that I read about on here for clothes. I will be buying some soon as well as a long sleeve swim suit and shorts. I love to swim all summer long so that will probably be my first purchase for UPF clothing as well as something I can wear while i'm at the local amusement park another of my favorite summer destinations, The rest of the year I don't go outside all that often. Summer is my jam (until this year as I have been so hot since spring started lol). I need to get some better sunglasses for sure, ones that are also HUGE because the bridge of my nose happens to be one of the most photosensitive spots on me.

Thanks for your input, I appreciate it a lot.

Regular Member

Date Joined Mar 2014
Total Posts : 294
   Posted 5/23/2014 8:58 PM (GMT -6)   

you should look into getting your thyroid and adrenals checked out. I have this issue also. I cannot stand any type of heat. A regular MD will probably dismiss it but a natural doc would help you. good luck!
Symptoms since 2008. Received a negative from LapCorp, Positive bands: 58,66. Just sent off blood to IgeneX . The waiting begins....

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 5/24/2014 12:00 AM (GMT -6)   
I love my coolibar.com clothes!
They have a large variety in stock.
The prices are what gets me though.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Regular Member

Date Joined Jan 2014
Total Posts : 360
   Posted 5/24/2014 6:03 AM (GMT -6)   
Hiya SpunkyMonkey! Welcome :)

I've resolved that my inner thermometer is just plain el broko.

Sometimes I'm so hot that my skin feels like it's on fire only to be ice cold the next hour. Sweater on, sweater off all day long. :p
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss
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