Don't think my thermostat is working!!!

[Daisy78]

Hi all hope your all keeping well

I cannot warm up today at all, I'm colder than when the temperature was in minus!!

I'm never just comfortable, either freezing to the bone or burning hot and sweating or both at the same time!! 😔 My body just can't make up its mind and it's taken all my energy, strength and brain power (I can't think straight) just to warm up. last night was a bad night of sweats (sorry) and after sorting myself out I was then shivering in bed, now today I'm frozen and sooo tired .

I have secondary raynauds and uctd

Does anyone else suffer with this and is there anything I can do to make it feel less extreme please it's driving me mad?

Does anyone know what part of the body is responsible for our temperature control?

In January I was in hospital for iloprost infusion for raynauds and the nurse would do obs every hour and I noticed my body temperature was always around 36 so quite lower that normal I think??? Especially in a warm hospital. Can you have a normal low body temperature or is it just my normal ☹️🙃☹️

Feel like I'm always on the verge of hypothermia

Take care x

[CarolMcl]

Hi Daisy78

Regulating body temperature is a problem I have too. Within minutes I can be uncomfortably hot to very cold.

The hypothalamus is responsible for regulating body temperature.

I think from reading others posts that it's unfortunately a common problem.

[Daisy78 in reply to CarolMcl]

Thanks CarolMcl

My hypothalamus has broken down ☹️

What fun and games we have to deal with

This is my worst symptom at the mo, I can manage all the aches and pains but I cannot manage this frozen feeling with no energy and it's like my brain is frozen too x

[CarolMcl in reply to Daisy78]

Yes, as I've said once before........ it's the gift that keeps on giving 🙄 x

[CarolMcl]

Meant to also say that my usual body temperature ranges from 35.9 to 36.4. Anything higher then it usually indicates the start of something.

[Melba1]

Hello, I have a similar problem except mine varies from under 36 to 39 all within the same day. My body seems to have lost the ability to control it itself so I’m more like a reptile!! I have to have hot baths/ sit on a radiator to warm up.

I have just been diagnosed with autonomic dysfunction as part of the Neurolupus and this is part of the nerovous system that controls temperature so it fits. The part I’m finding worst is that is also controls heart rate, blood pressure and digestion so I’m all over the place with these as nothing is controlled automatically 😬.

If you have any of the other symptoms other than temperature control it may be worth asking as there are things they can do. One of the first things noticed with me other than dodgy temperature was that my pupils didn’t respond properly to light/ dark which is another sign. I just thought I had sensitive eyes and always wore sunglasses!

Hope you warm up - at least spring is here!

X

[Daisy78 in reply to Melba1]

Hi Melba1

Thanks for the information it's very helpful,

I think my heart rate is ok although no one has told me any different, but my blood pressure is on the low side and my digestion has been a problem for a long while also have sensitive eyes. It's always good to be armed with this info so thanks again

I have warmed up a bit today and lovely to see some sunshine although still freezing x

Keep well x

[Hidden]

"In January I was in hospital for iloprost infusion for raynauds"

Did that infusion help? If so, for how long? I have similar problems. I'm virtually "deader than dead" in winter.

[Daisy78 in reply to Hidden]

Hi anothermember

To be honest it hasn't helped as much this time 😔

Had the first one last year and I noticed the benefit straight away especially in my hands, even though I'd still get attacks they were less severe

I felt pretty rubbish as well for a few weeks but then had this boost of energy (was great felt the best I had in ages) then sorry to say it faded away☹️It lasted about 3 months

This time I'm still waiting for that boost!! and I'm still in bits with this winter

How is it working for you? I do hope your having better success x

[Hidden in reply to Daisy78]

Thank you for your thoughtful reply.

Not much luck in my case, I never had this infusion.

It seems reports are mixed, from "brilliant" to "not good at all" and those in between.

This winter was one of the worst.

Thanks again.

[Daisy78]

Hi Louise-a

Thanks for your reply, It's such a horrible feeling I wouldn't wish it on my worst enemy. You would think it would be easy to just get up and move around to warm up but it feels like bad flu and that's the last thing you want to do x

Keep well x