Night sweats again: Hi all, I have reviewed many... - LUPUS UK

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Night sweats again

mudglutton profile image
19 Replies

Hi all, I have reviewed many posts for answers on this but symptoms and underlying issues are variable and so posts are inconclusive. I have SLE and Sjogrens. I also have drenching night sweats. Here's my summary:

1) I'm male, so they're not menopausal!

2) My medication has been stable for years: Hydroxychloroquine @ alternating daily doses of @ 200mg and 400mg. Nothing else other than omeprazole and Adcal.

3) Sweats seem entirely random: I can go for weeks without any, then bang! Daily sweats for weeks.

4) Sweats are usually massive: pillow and bed so soaked that I have to change and go to another room.

5) Room temp does not play a part. Sweats occur in all seasons. Indeed, a heated underblanket on low seems to offer some mitigation.

6) Different fabrics seem to have no effect, though sleeping naked seems to exacerbate the sweats (but perhaps that's because there's less fabric to absorb them).

7) Sometimes, but much less frequently, I get massive daytime sweats too. Stress seems to be a trigger.

Do your night sweats have similar characteristics? I would like to understand if mine are unusual. Also, have you found any reliable ways to limit the symptoms? I'm getting desperate and may try some of the (appropriately targeted) natural menopausal supplements that others have alluded too.

Thanks.

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mudglutton
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19 Replies
marypw profile image
marypw

Sweating is not uncommon in lupus patients and can also occur in other autoimmune diseases. I’ve also had it after major surgeries, as has my husband - so yes I think stress can play a role.

You could try sleeping on a big towel -much easier than changing all the sheets or you could get a Chillow (cooling pillow).

Tiggywoos profile image
Tiggywoos in reply to marypw

Big beach towel defo helps

Tiggywoos profile image
Tiggywoos

Hi . I am sorry to hear about your night sweats and I felt like I should reply as my husband gets them so bad like you . His Dr dismisses them as he has colitis and other weird antibodies but I’m convinced it’s down to sleep apnea which can cause bad sweats.

Have you spoken to the GP about them and had a good range of blood tests to check kidney function , thyroid etc ?

The only thing that seems to help a little is if he drinks a lot of water in the day and doesn’t eat late . It’s not right that you’re sweating in the day too so I would definitely speak to gp . Good luck 🤞

FredaN profile image
FredaN in reply to Tiggywoos

That's interesting that your husband thinks it's down to sleep apnea. I've wondered about that, as I quite often wake up gasping for air then end up coughing for ages. I also have night sweats - they've been going on for at least 5 years, probably more like 7 and GPs have tested my hormones at various points and said it's not that. I do choke on some foods and drinks (drinks/saliva going down the wrong way, sandwiches being too dry etc), which might mean the gasping thing is something else.

Bizarrely I haven't had any night sweats following the Covid booster I had last Saturday. Not sure why, but enjoying the break!

StriatedCaracara profile image
StriatedCaracara

Sweating can also be part of autonomic dysfunction.

If use link below and scroll down there is an assessment tool. (Best though to run symptoms past GP asap, so can rule out other things though too)

thedysautonomiaproject.org/...

sarahsch profile image
sarahsch

I get night sweats, but not as bad as you.

I have a fan in the bedroom plugged into a remote control socket with the controller next to the bed. That way I can start the fan when needed with the minimum sleep disturbance.

It depends how your partner is with a fan on in the night. Mine doesn't mind. It doesn't affect his sleep. He set it up for me, but he has been known to sleep through a hurricane!😂

Dottie11 profile image
Dottie11 in reply to sarahsch

I do this too. I use it every night.

mudglutton profile image
mudglutton in reply to sarahsch

Thanks for the advice, but unfortunately, I only wake up when I am already drenched (and freezing cold from the drenching).

KnitSewPurl profile image
KnitSewPurl

Hi, My night sweats seem to always co relate with a flare up and migraines and increased lupus lesion spots.

Also happens after when I have had a stressful week /weekend.

KnitSewPurl profile image
KnitSewPurl

Mine is all night sweats btw no day sweats.

Krazykat26 profile image
Krazykat26

Earlier this year I invested in a cooling blanket..it was worth every penny! I got it from Amazon. My sister uses one too and it's helped with her night sweats which sound as extreme as yours.

Dottie11 profile image
Dottie11 in reply to Krazykat26

I use silk pillowslip. Expensive but great for cooling.

SurferGuy profile image
SurferGuy

Hi Mudglutton, sorry you're going through this.

My reply might seem a little odd, but it comes from assessing a similar situation to yours.

I've found over the years that the colder it is as night the more I sweat. Last night was a cold one and I was drenched. I have a theory about what I wear at night too. I think wearing a tight cotton t-shirt makes me sweat at times. Baggy loose top not so much so. I'm going to be putting that theory in to play tonight.

I rarely sweat at night in summer or warmer nights. And I just do not sweat much at all during the day.

mudglutton profile image
mudglutton in reply to SurferGuy

Hi SurferGuy. Thanks for this. It correlates exactly with my own experiences. For me, it's looking like the best solution will be: loose PJs plus a summer quilt all year round, supplemented by an electric underblanket on low during winter. One thing I haven't tested is long PJs vs. shorts - I've only ever worn loose shorts. Have you tried longs at all? Let's continue to share findings on this...

SurferGuy profile image
SurferGuy

I always wear long PJ bottoms. Just don't have the legs for shorts 😂 I also have severe and terrible raynauds on the feet which causes chill blains and blisters, so have to keep legs warm. But I don't think the bottoms make any difference. The top does as does how cold I get. My theory is the colder I get, the more I sweat. So odd!

mudglutton profile image
mudglutton in reply to SurferGuy

Same! The colder I get,the more I sweat.

poseymint profile image
poseymint

Have you been checked out for Lymphoma? Symptoms are drenching night sweats, weight loss, swollen lymph nodes in neck, groin, abdomen are common areas, fatigue, pain, rash. Sjogrens patients can have increase risk of lymphomas. Initial tests are blood work, CT scan.

nhs.uk/conditions/sjogrens-...

mudglutton profile image
mudglutton in reply to poseymint

Thank you for the suggestion, Poseymint. I haven't, but apart from the sweats, I don't have any of the symptoms you describe.

Aethelflaed profile image
Aethelflaed

I know you've said you don't have any other symptoms but as males with Sjögrens are more likely to have lymphoma than females, it would be wise to get this ruled out conclusively: bsd.biomedcentral.com/artic...

I hope you can find some relief for these awful night sweats.

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