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Posted By : Lynnwood - 7/11/2017 8:08 AM
Has anyone found a good way to regulate temperature? I always seem to be either hot or cold, never just right. The craziest part is that it probably isn't my body temperature, just my body's sensation.

My thermostat is set at a steady temperature - 74. Sometimes I feel hot (and sweaty) at that temperature, sometimes I feel cold!! I can feel both in 2 hours of sitting still on the sofa!!

Other issues include night sweats. They'll stop for 2-3 months, then come back with no cause I seem to be able to figure out.

I'd love any hints anyone has figured out. Thanks.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : Lisabeans - 7/12/2017 8:26 AM
I wish I had an answer for you. I too experience the night sweats from time to time.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Posted By : Melissa D. - 7/12/2017 9:34 PM
Hi Lynnwood,

I have been experiencing issues with what you are talking about for over a year and a half now. We have our thermostat set always at the same tempature as well, we never change it. I can be perfectly comfortable and then break out in a sweat and from there go into the chills. When it first started I thought "oh no I'm getting sick" but it has continued. It's not everyday, but it does happen several times a week. I do have to note that I was diagnosed with adrenal insufficiency about a year ago and two months ago began having some hormonal issues going on as well (thank you being 49 😏). So, there's a chance my temperature issues could be related to that. I have mentioned this issue to both my rheumy and endocrinologist, they both ran labs but never really addressed the issue again from there.
Hugs;
Melissa
_____________________________________________________
Lupus SLE 1996, Sjogrens, Raynauds. My worst nightmare was imagined when my son was diagnosed with RA and Lupus NPSLE at 19.

Posted By : Butterflake - 7/14/2017 10:08 PM
Hi Lynnwood. I've been wanting to answer this post since I saw it. I usually call this "the hot colds." I've had these temperature fluctuations about 5 years. I mentioned it to my rheumy PA last visit and she said she has a couple of patients who must change their clothes. My hubby chimed in and said- she does. My hair becomes soaked and if my hair were long it could possibly support a kelp bed. Under my large, sagging breasts it is always dark and wet. If yeast didn't grow there so easily I would expect a salamander to stick his head out and wave.

I think that I have 3-4 of the body sensations each day. I think your word sensation is quite apt because when I am hot it's sensational. It's worse when my feet are ice cold and the remainder of my body is sweating.

I have thought of only a few things that help. I like to pour rubbing alcohol (isopropyl 70%) on a washcloth and lightly rub over my body, especially in areas that have creases such as under breasts. The alcohol is drying but that helps stop yeast.

I only rarely have night sweats but I've thought of buying a cooling pad for the bed that I saw on Amazon.
I keep a fresh, dry washcloth in my purse at all times and use it often to wipe and absorb sweat.
I drink Gatorade when I've been sweating non-stop for a few hours.
That's all I can think of so far. Love You! Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, anxiety; CVID (Common Variable Immunodeficiency); IVIG infusion monthly; Hypertension; Osteoarthritis of the spine, right knee, fingers, toes; Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: Better living through chemistry

Posted By : Diamond20_UK - 7/17/2017 4:53 PM
Hi Lynnwood,

In my experience of having hot and cold sweats which is crazy and drives you mad.

I mentioned this up the hospital and apparently Lupus causes it, also Raynauds with the blood vessels shutting down and re-opening and also gland trouble.

I feel for we all suffering this issue.
Diagnosed with MCTD (Mixed connective tissue disease)

Lupus SLE/SCLE/Secondary Sjogren’s syndrome/Raynaud's phenomenon/Scleroderma
Antiphospholipid Syndrome/Peripheral neuropathy/Muscle Atrophy/COPD/Hypothyroidism
Chronic IBS/Epilepsy/Osteoarthritis (Bipolar-Manic depression-OCD)

Posted By : Mrs. Brady - 7/18/2017 7:42 AM
I wish I knew the answer. I have been having these sensations since I was diagnosed. I am freezing right now, my hands and feet are ice cold and I was sweating 30 minutes ago. I thought it could be hormonal, I'm 46 and my cycles have went from every 28 days to 110 days, 18 days, back to 100+ days, etc. I have been having night sweats for several years as well and now have them nightly. I keep a fan near me at all times and sleep with it on every night. I also bring it on the deck with me, in the shade and have to turn it on and off frequently as I bounce back and forth from hot to cold.
Hoshimoto's Hypothyroidism DX Oct 1997
Pancolitis DX Nov 2013
GERD DX Nov 2013
Lupus, DX Sept 2015
Medications - Synthroid; Hydrocort Enemas (as needed); Prilosec; Iron; Plaquenil; Vit D, Humira
Past Meds: Lialda and Imuran - adverse reactions to both, discontinued

Posted By : KarenD - 10/11/2017 9:31 AM
Butterflake said...
Hi Lynnwood. I've been wanting to answer this post since I saw it. I usually call this "the hot colds." I've had these temperature fluctuations about 5 years. I mentioned it to my rheumy PA last visit and she said she has a couple of patients who must change their clothes. My hubby chimed in and said- she does. My hair becomes soaked and if my hair were long it could possibly support a kelp bed. Under my large, sagging breasts it is always dark and wet. If yeast didn't grow there so easily I would expect a salamander to stick his head out and wave.

I think that I have 3-4 of the body sensations each day. I think your word sensation is quite apt because when I am hot it's sensational. It's worse when my feet are ice cold and the remainder of my body is sweating.

I have thought of only a few things that help. I like to pour rubbing alcohol (isopropyl 70%) on a washcloth and lightly rub over my body, especially in areas that have creases such as under breasts. The alcohol is drying but that helps stop yeast.

I only rarely have night sweats but I've thought of buying a cooling pad for the bed that I saw on Amazon.
I keep a fresh, dry washcloth in my purse at all times and use it often to wipe and absorb sweat.
I drink Gatorade when I've been sweating non-stop for a few hours.
That's all I can think of so far. Love You! Butterflake




Hi, my name is Karen and I am new to all of this.

I was diagnosed with MCTD 3 months ago and am taking plaquenil. You just described EXACTLY what i have been experiencing. I have had temp regulation issues for years, but it has gotten much worse lately. I always have fans blowing on me while everyone else is cold! Also keep a dry washcloth in my purse as my hair and face become dripping wet!

Anyway, I have been trying to decide which doctor to see. I have told my GP and she didn't seem concerned! Is this a symptom of MCTD? I'm 57 and postmenopausal. Is it hormonal? HELP!

Posted By : Lynnwood - 10/11/2017 10:57 AM
I've recently lost about 15 lbs of "prednisone weight", and am not having as many temperature issues as I was at one time.

I have discovered that if I eat processed carbs (bread) or sugar (ice cream) with dinner (or after 6 pm), I will almost certainly have night sweats!

As for what it is, it's generally a combination of things and I've decided we are all different and must try different things to figure out our individual causes and effects.

Good luck!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

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