Excessive night time shivering and sweating but no actual temperature...

[Sallyb828]

Hi all,

I'm an RA sufferer and currently taking biologics medication amongst others.

Roughly every few months I will have a night where I wake up shivering violently but excessively sweating too and this will often last the whole night and then I'll be normal again in the morning.

Each time this happens and I check my body temperature though, it's within normal range?!!

Does anyone else get this? It doesn't happen necessarily when my joints feel bad, just approximately every few months and always overnight? I'm wondering if it's related to RA...

[Deeb1764]

Ohhhh the night sweats I get these from 9pm onwards and as soon as I go to bed they come on too! I can if sweat pouring Off me go thro a coolDown period and have been known to start shivering too. Lots of huffing and puffing is had with duvet on and duvet off same with window open or closed.

Consultants never seem bothered by it but is a known side effect Of of autoimmune.

[Hustler in reply to Deeb1764]

You have just described me perfectly, thanks for posting this as I always thought it was left over from the menopause lol as that's roughly when it started. I have PsA as well as being hypothyroid too.

[Deeb1764 in reply to Hustler]

Too many things put to either autoimmune or menopause so it’s just trying to work it all out. I have 4 autoimmune plus bp and oa and asthma all since diagnosed with RA and it’s a minefield of what is doing what. BUT sweats started off Vit D deficit then never truly went away and on bad flare days they are more often. There was a discussion on here last year when many of us stated. Never have a temperature even when really poorly with something else. Again a weird thing that happens with some autoimmune people body temp does not go up when I’ll.

[Neonkittie17]

Could it be your medication, as many meds have listed side effects of night sweating? The body then goes all shivery as it tries to regulate the heat. Both Fentanyl patches and Rituximab infusions were culprits for me and have night sweating listed as a side effect? Also hormones such as meno can play a part. If it’s every few months though it doesn’t seem to suggest that, although when I was in peri meno my night sweats were less frequent about every 3 months at the start. They all calmed down but I still have Fentanyl patches and I do tend to wake and feel quite hot around 4am, but it soon calms after a drink of cold water and I can get back to sleep.

I was interested in the moisture wicking nightwear which draws away moisture from the body and claims to stop you waking up as much sweating as you’re not disturbed by the fact you feel hot/damp. (I think it was “Become” wicking nightwear I looked at before. ) Hope you have less occurrences and you could mention it to your rheumy/GP to see if it is a med side effect. Might just help to know it is if it’s manageable. Hope you can keep cool. I’ve had the flushed face and feeling hot too yet no raised temp. I understand immunosuppressed people don’t have raised temps as other do. Also worth a mention that if you’ve had any steroid injections that they are well known to cause a raised temp for a couple of days.

[summer32A in reply to Neonkittie17]

I get this in evening but not in bed.My GP thinks stress overload!

Are you between 41 and 51?

And female! Or should I say I'm these politically correct times a person with a womb!

If so it could be menopause related?

[Neonkittie17 in reply to summer32A]

No it isn’t meno, it’s the meds that cause the heat for me. It isn’t anything too awful. I did mention to Sally re hormones/meno.

[sylvi]

I don't get night sweats, but i do get sweats during the day from the shoulders upwards due to my RA and the drugs i take. xxxx

[oldtimer2]

I have had these episodes now for years. No-one seems the slightest bit interested - they just say variously that it's part of having an autoimmune condition, or it's due to the medication, that is, they don't know! I have linen sheets which I find more comfortable if I have a night sweat. And a fan - but then I get shivery....and have to get up and change my night clothes and air the bed to dry it out.

There seems no literature of a medical nature to help.

[Sallyb828]

Thank you all, I am 38 so possibly too young for pre menopause, though I can't rule it out I guess ...I've only ever had these episodes since my diagnosis and as it's only every few months I didn't suspect it could be medication. Maybe it's just a weird auto immune thing too then! Just so horrible when I had to sleep in a dressing gown as felt so so cold but yet knew I was drowning in sweat too but couldn't control it and then all of a sudden it just goes! And body temperature remained normal throughout?!

Thankfully last night was a more peaceful night! Phew! Xx

[Hidden in reply to Sallyb828]

Hi. I had this a few times when I started with RA. I was 41, so peri-menopause was suggested, but like you, I felt I was ‘too young’. It was an occasional thing for about a year, and since then nothing (I am now 53). NB No idea if I’ve had the menopause or not 😂. My periods stopped as soon as I started on Mtx, so it must ‘mess’ with your hormones etc. As we are women, we are not medically investigated enough I’m afraid, but ‘dismissed’ a lot of the time. I was put on Mtx straight away as I was rapid onslaught and it was ‘everywhere’. It’s quite ridiculous we have no idea 🙄🤣.

[Sallyb828 in reply to Hidden]

It's really poor isn't it that we get given all these strong drugs without the education and research to go alongside it, I'm shocked at the little I was told about the amount of effects that either the condition or the medication can cause when I was diagnosed! X

[Hidden in reply to Sallyb828]

I read loads of NRAS leaflets, but am still learning things… medical articles are useful if you fancy those.

[Gottarelax]

I had very quick onset of inflammation all over. I had chills and sweats with it. When I had a prednisolone injection they stopped. I had to let the injection just wear off without treatment so that I could have more diagnostic tests. The sweats started to come back again so I think, at least for me, that they are a sign of active inflammation.

[Happy5]

Good question think lots of us have these symptoms, but they go under the radar of ones more horrendous.

Not sure why? I developed RA while in a tropical country so sweats were the norm.

Since returning to UK and starting treatment would say the meds (MTX) give me fluey

symptoms some times not often.

Deffo get the arrrgghhh too hot, over heating in the night, throw the duvet off & sleep uncovered. Then cool down enough to feel the need for the duvet back on.

All been exacerbated by the the very hot weather we had.

Did need to go to the bathroom to do the apply coldish water to myself, go back to bed with

the air cooling me down.

TBH it's just become my normal night time routine.

[Mmrr]

I get night sweating too, I'm well past the menopause.

I tend to sweat profusely when my RA is less well controlled.

A 4.5 tog coverless duvet and a bamboo sheet helps to keep me cooler.

[Monkeysmum]

Hi Sally, I’ve had similar episodes on and off over the last few years, usually during the night as you say but sometimes in the day too. Like you I have taken my temperature and generally there is either no change from normal or a very small rise from my normal temperature. As others have said though, I do think being on biologics effects how our body responds in terms of fevers - in fact a warning card I was given to keep in my purse to show any medical professionals when I started biologics, says that those on this medication may not show normal signs of infection such as raised temperature etc. A while ago, it struck me how much these symptoms reminded me of how I felt with the flu, or a bad virus, so I tried taking some paracetamol as I would do normally with a raised temperature, and it does seem to make me feel somewhat better within an hour or so. Might just be psychological but could be something to try next time it happens to you rather than suffer through the whole night! Xx

[Sallyb828 in reply to Monkeysmum]

Thank you, I've never been told that about biologics so that's definitely worth knowing! And also not tried paracetamol but will do that the next time it happens- thankfully it does seem to be only every few months or so but when they happen they're just horrible The shivering was so violent and I felt freezing but obviously was sweating buckets too xx

[Smiler69]

I had this happen to me last night, this was the first time I have had this and this morning I woke up drenched. I’m feeling rubbish today my joints are aching and all I want to do is sleep.I have Fibromyalgia and degenerative disc disease.