Hot and cold

[Barbarajeand]

Hi all....I have a question about regulating body temperature. Lately I get so hot at night that I am up turning down the temperature on the furnace.....and it's freezing outside! Then I get back in bed and I am still hot. I am worn out by morning from all this up and down throughout the night. I can actually feel how hot my skin feels...like I am running a temperature. I break out in a sweat and just feel exhausted as the day progresses. I also have my butterfly rash back...although it is not as bad as the last time. Is this part of lupus...also does the rash mean you are having a flare? I forced myself out of bed and blow dried my hair and was sweating the whole time!! After all that my mood was not pleasant😟 I feel guilty because a friend came to visit and I was a bit bity. I explained I wasn't feeling well and they understood. The other day I cleaned my house and was in bed the whole next day!! I was exhausted. Anyway, just needed to vent. Thanks for listening....you all are so warm and caring and I am thankful to be on this forum.

Blessings

🌸 Barbara

[whisperit]

Hello Barbara,

I'm no practical use to you, but I do really sympathise. On bad days I have what can only be described as hot flushes. They vary according to how bad the day - on a "normal" day, it seems to be triggered only after I have exerted myself. but on bad days, they just happen spontaneously, and even on waking during the night. My suspicion is that it relates to some sort of autonomic dysregulation, when the complex signalling between hormones, nerves etc that control things like body temperature gets messed up. My rheumy just shrugs his shoulders and says he doesn't know what it is. And I haven't found a way of dealing with it. But I feel your pain x

[Barbarajeand in reply to whisperit]

Thank you whisperit. I agree with you that it relates to some sort of autonomic dysregulation. As I look back on this issue I realize I have always done this. Out of the blue I would at times just become extremely cold and actually shake and shiver....and it could be a warm sunny day. I can remember this happening even as a child. I have read that lupus can affect how the body regulates temperature. I will ask ending about this at my next appointment this month. Thank you for replying! Take care.

Many blessings🌸

[dihealth]

I have a small 30cm fan on my bedside table that I can turn on and off when I need to..it works really well because I can angle it however I want. It saves getting up and down at night, because not sleeping definitely makes fatigue worse.

[Barbarajeand]

Thank you for the great tip dihealth! I never thought of that. I will be investing in a small bedside fan very soon!! It would help me sleep better. Thank you again🌷

[Chanpreet_Walia LUPUS UK]

Hi Barbara,

Have you spoken to your doctor about this?

Flu-like symptoms such as chills and night sweats are commonly associated with lupus. To find out what other symptoms are associated with lupus, click here: lupusuk.org.uk/the-symptoms/

Skin involvement is common in lupus and affects around 60%-70% of lupus patients. The malar (butterfly) rash often appears when disease activity is higher or when exposed to certain triggers like UV light. To find out more about lupus and the skin, you can read our booklet: lupusuk.org.uk/wp-content/u...

People with lupus can experience periods of remission whereby their lupus is controlled and they feel relatively better; reducing the signs of their symptoms.

To read our blog article on managing fatigue, please click here: lupusuk.org.uk/managing-fat...

I am glad to hear that you have a supportive and understanding friend!

Please keep us updated, wishing you all the best.

[Barbarajeand]

Thank you so much for all the information. It is very helpful. It seems there is so much to learn about lupus and it is overwhelming. I do appreciate all of your help.

Barbara