Anyone experience this?

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VLou*
Regular Member


Date Joined Feb 2015
Total Posts : 63
   Posted 10/26/2016 5:17 AM (GMT -7)   
Really hard to explain but here goes...

Recently because of the cold weather I've got a duvet and two blankets on the bed. I also have my bedroom radiator on in the evening and wear pyjamas.

Several times I've experienced something quite odd. Even though I've got myself all wrapped up and my body temperature has warmed up all the layers I feel like my body has waves of cold going through my body deep inside. It's like I can't be cold because I'm warm, if you see what I mean. It feels like I have a fridge inside my body.

Does anyone get this?


No diagnosis but on medication for lupus.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7550
   Posted 10/26/2016 7:22 AM (GMT -7)   
I've gotten weird temperature "surges" like that ever since I've had Lupus. In the middle of what seems like a normal afternoon, in the comfort of a 74°F (air conditioned) home, I will suddenly feel deeply frozen. I've found that if I climb into bed and turn the electric blanket up to high, I will fall VERY DEEPLY asleep and wake up in 2-3 hours with everything normal again.

The cause? My guess is some weird surge in the immune system. I don't seem to run a fever when this happens, but if I've been trying to work too hard, under too much stress, or eating poorly it's more apt to happen.

It's better than the days when my Lupus was more active -- then I would wake up in the night soaking wet and freezing. Had to change both clothes and bed clothes on too many nights to count.

If it's strange, it's probably auto-immune! lol
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

VLou*
Regular Member


Date Joined Feb 2015
Total Posts : 63
   Posted 10/26/2016 7:30 AM (GMT -7)   
Hi Lynnwood, thanks.

I'm glad you don't suffer as bad with it now.

Yes I'm the same, it happened last night and I didn't have a fever. I do have raynaud's really bad and I felt so cold yesterday, my mum noticed this and said I was nesh as she didn't think it was that cold!

I did feel rough last night and this morning and think it was because I had the sun on me for an hour whilst driving.

Yes I think it's time to get the electric blanket out!

Thanks.

VLou*
Regular Member


Date Joined Feb 2015
Total Posts : 63
   Posted 10/26/2016 7:32 AM (GMT -7)   
And my night sweats are so much better since being on the hydroxychloroquine.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/26/2016 10:31 AM (GMT -7)   
Before I was diagnosed I would get flashes of freezing. I would bundle up in a heavy coat at work and practically sit on the heating duct and still feel like I had ice water in my veins.

I don't have that anymore but I do have issues of being too hot now. (The change) ugh.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

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

VLou*
Regular Member


Date Joined Feb 2015
Total Posts : 63
   Posted 10/26/2016 12:13 PM (GMT -7)   
Funny that couchtater I'm always on the radiator!

I am so thankful I have medication but I still think about getting that diagnosis every single day.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/26/2016 9:11 PM (GMT -7)   
I just take my life now day by day. Sometimes moment by moment....

I used to grieve for my old life, but I've come to accept my diagnosis. When I'm overwhelmed with the stress that seems to come with flare ups I see my psychologist who deals with people with chronic illnesses.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

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

VLou*
Regular Member


Date Joined Feb 2015
Total Posts : 63
   Posted 10/27/2016 4:25 AM (GMT -7)   
I'm glad you have help when you struggle.

How long did it take for your diagnosis?

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/27/2016 7:59 AM (GMT -7)   
I do get these weird surges you are talking about, I'm glad to know it's not just me but another thing I can chalk up to the crazy world of lupus! One minute I can be just freezing, like you mentioned to be the bone where I cannot get warm no matter what. I sleep with a heating pad year round because I literally don't know when it will hit. Then out of the blue I am stripping of the layers of clothes I have put on trying to get warm. My husband and family thinking I'm crazy most of the time...lol.

VLou*
Regular Member


Date Joined Feb 2015
Total Posts : 63
   Posted 10/27/2016 11:56 AM (GMT -7)   
Melissa sounds exactly like I try to describe-'to the bone'.

How were you diagnosed?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/27/2016 9:31 PM (GMT -7)   
I started feeling bad in January, went to doctor in February, saw specialist in March, diagnosed in June.

Was forced into retirement two years later by lupus, school closing, and being laid off.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

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