[sjink]

Hi
I am plagued again with hot flushes (US: flashes I think). They went away and have come back as the lupus has started flaring.

Wierdest thing is that every night I turn off the light, lie back on the pillow, fall asleep for about 10 minutes and then wake up really burning up all over and my neck and head really sweating. My partner says he can time me waking almost to the minute.

During the day when I rest if I lie down this happens, but as I am more awake I also notice a sort of dull pain/heavy legs and terrible nausea before the sweating starts. I also have these symptoms if I move from outdoors to indoors (very embarrassing going into cafes etc.) and from moving about to sitting still. (Starts as soon as I sit down to eat my evening meal).

I have also noticed that I get them whenever I need to pass water, in fact the sweating starts before I realise I need to go to the toilet. I wake during the night drenched in sweat and needing to go to the loo.

Does this sound familiar to anyone? Obviously something a bit mad going on in the autonomic nervous system I think. I do get mild CNS symptoms.

Thanks, Sara

 

[Maia]

Your thoughts were about the same as mine - something with the autonomic nervous system. Are these the same as you had before or not really? This is something that really should be mentioned to your doctors if you ask me! I'm sure there are other possibilities that should be considered as well.

The only time I experienced hot flashes (so far at least!) is when I went on Lupron to treat endometriosis following surgery. For me, it only affected the neck/face or so it seemed. Definitely had sweat pouring down my neck/chest though too. Seemed to hit me most often when I was sitting down as well - at least from what I remember now.

Good luck getting some relief from this soon.

 

[sunflowergirl2]

:hehe: I get hot flashes at night, but not usually during the day. I attribute it to lupus, menopause, and the meds I'm on. Cathy

 

[Katharine]

Hi there,

I get night sweats pretty regularly but seem to go through phases of it. They seem to be linked to worsening disease activity and I got them long before being on any meds so know they're not linked to that (in fact they have reduced since being on meds). I don't get them after lying down but often a couple of hours after and they wake me in the middle of the night.

I also get incredibly hot and start sweating for no particular reason if I go into shops or offices that are not cool. It is most embarassing and a pain knowing that you look like a one of the three little pigs being slowly spit roasted :lol:
I haven't found a thing to help except choosing my clothing very carefully and always staying cool.

I have no idea what causes either and know absolutely nothing about the automnic nervous system??? I'd say with me it's a sort of thermostat thing. I seem to be terribly temperature sensitive. I react very very quickly to being slightly too hot and equally quickly to the cold. I spent my five days in Ireland being cold - land of the sideways rain and all those drafts!! Anyway, it means I am very often too hot or too cold and have trouble being just right.

sorry, can't help more,
Katharine

 

[greenhaggis]

Sara,

Katherine has written exactly how I suffer too!

Wish you some nights without the sweats!

Love Lesley

 

[Beanbag]

hi Sara,

Katherine also describes what happens with me. I also get the hot flushes when I get tired or have done too much, which is why I think it is autoimmune and am going to mention it to my rheume next week.
My family find it amuseing as I'm either wrapped up shivering or stripping off and absolutely dripping with sweat, and yes it is very embarrassing when out and about.

Hope you get some good sleep soon and will let you know if my rheume sheds some light on the matter next Friday.

Take care love beanbag

 

[sjink]

Dear All, thank you so much for replying.

Well I'm not the only one then. I think it is more disease activity than menopause (which I finished 2 years ago) because it comes and goes with the other lupus symptoms. I used to think it was steroids, but no different when off them.

Just so weird that it happens when I lie down. It doesn't happen when I sit up and meditate and keep very still, or when I go from sitting to standing or vice versa. So it seems to be some response in my body to change of body position rather than just changing from moving to still.

I will mention it to the rheumy when I see him in Sept.

Katharine, the autonomic nervous system is, very simply put, the part of the NS that maintains body temperature, controls perspiration, urination, breathing, heart rate etc. it is called autonomic because it does this mostly automatically without us having to think about it. Although our mind can control bits of it... like holding on before going to the loo , There seems to be dfinitely something wrong with mine. Like you my thermostat does not work. I also overheat in very still air, so have to keep air moving in the flat. Luckily I can stand on a balcony and cool off.

I also get these heting up/sweating bouts when I push myself just the tiniest bit at the moment. For example just standing cooking, I have to keep resting between chopping, stirring etc etc else I break out into sweats. I cook sitting on a stool now to conserve my energy.

Oh well the joys of a lupie life.

Oh and Good luck Beanbag with your rheumy appt. Hope you get some answers.

Love
Sara x

ps definitely flaring had to edit this over and over i typed it full of errors. Hope it all makes sense. Ho hum.

 

[lazylegs]

Hi Sara,

When I am flaring I get night sweats. Sometimes it is bad enough that I have to change the sheets. If it continues to disrupt my sleep the doctor will have me take half of my prednisone in the morning and the other half in the evening.

During the day i get them if i overdo. Lately it has been happening after bending over. The cheeks turn bright red and I am instantly drenched. I take it as a sign to stop and rest.

Take care,
Lazylegs

 

[sjink]

Hi Lazylegs

Yep that sounds like me. The bending over bit too. And red as a beetroot like you say. And like you I am taking it on board that I need to stop and rest. Been doing too much again. And am going down with a cold now another sign to slow down.

Thanks for your reply
Love
Sara

 

[acard]

Hi Sara,
I am always hot! I run fans 24/7. I do wake up sweating a lot, but I am always sweating. I too am like Katharine. I do find when I have inflammation there is no use in trying to stay dry:hehe: I hate always being hot and wilted!!!

Good Luck,
Becca

 

[sandy123]

sandy123

hi
i do not sleep much through the night with hot sweats,and i even get them through the day, sometimes they are so bad that i feel as though i am going to faint, i have not started my meds yet so i hoped that this will help me when i do.

hope you feel better love sandy

 

[sjink]

HI, thank you Sandy. My doc says sweats undoubtedly hormonal, and of course lupus has some sort of (unknown) hormonal link. I said what about the fainting feeling and he said a lot of his female patients mention that feeling.

He told me that the sweats during the day, which happen when I do something physical, may be because I am doing too much and pushing my body too much.

Hope the meds do help you.
Love Sara