Can’t cope with the heat 😡

[weathervane]

Hello all , i have Sjögrens and i dont usually perspire that much but OMG since the hot weather came on it’s dreadful . I have a cold shower and i try to dry my hair but as soon as i have finished my hair is drenched again, and its like that on and off all day . Im not doing very much as im just over 2 weeks post discectomy surgery, no lifting or hoovering etc . Is it anything to do with the surgery ?? . Im not menopausal as im over all that . It is driving me mad , a friend took me out for lunch yesterday and it happened again, its really embarrassing. I know this is not a serious problem but i was wondering if anyone had any ideas 🤔🤔

[GloomyEeyore]

This weather has been making me perspire a lot too. Strangely though I’m still getting cold hands and feet. You can see the perspiration running down my face then feel my hands like blocks of ice. Can only assume this is down to the Raynaud’s.

Not sure what could be causing the perspiration, other than strange weather and autoimmune illness. As for trying to treat it, if I’m at home I will use a cold water bottle. Fill a hot water bottle with cold water. I also have a hand held fan as well as a desk fan. It’s harder if I’m out. Had thought about buying some of those hand warmers that you boil to heat but freezing or refrigerating them instead. Realised they wouldn’t work for me as my hands are still cold. May be something that would help you? When I look around I see that a lot of people are having problems with the heat. Think that we are not used to it and not designed for it! Unfortunately autoimmune illness seems to send our thermostats haywire and make it worse 😩

I hope that your surgery went well. Wishing you a speedy recovery. Xx

[weathervane in reply to GloomyEeyore]

Thanks gloomy, I seen to be suffering more than normal this year!! My hands and feet are hot and a bit swollen. I hope it settles soon . The surgery has gone well , quite stiff still but hopefully will improve as can do more exercises. You take care , best wishes xx

[Hidden]

Hi W. I too am having awful drenching sweats - mine worse at night. I keep asking everyone else if they are as hot as me but they just laugh - don’t seem to be damp and sticky and drenching the duvet like me.

Also got itchy scalp with some extra raised bite-like red spots on my face behind my ears and down my neck which I think must be the sweat and heat. Woke thinking I must wash all my actual pillows!

So my skin isn’t coping well with heat either. But that said if it’s unusual for you to sweat so much then you should see GP just to check it’s Sjögren’s flaring following the op/ procedure. I know Sjögren’s makes the two extremes quite a regular problem for many - usually no sweat so overheating but also sudden outpours like ours too. Maybe lymphatic system was jiggered by your anaesthetic? X

[weathervane in reply to Hidden]

Hi twitchy, I love the sunny weather but it is darn hard to cope with . I don’t know if im having a slight flare as the lymph nodes and joints are achy and puffy. I am going to the day unit Friday week and if they are still happy with my wound and the bloods are ok I should be getting rituximab, as well as seeing the rheumy.

[weathervane in reply to Hidden]

Oops pressed reply too quickly 😁 does the heat ever trigger a bit of a flare with yourself ? Takecare and stay cool xx

[Hidden in reply to weathervane]

Yes it does but the cold is much worse. My skin seems pretty reactive to sun despite factor 50 plastered everywhere each morning. I wear hat and my prescription shades but still seem to be a soggy, itchy, spotty lump! X

[weathervane]

Yes the cold is difficult as well 😨 I lucky I haven’t come out in a hest rash for a while , touch wood . Have you tried magi cool spray ? I have used one in the past which helped heat rash . Ihave my hand fan on at the moment with nee batteries , hellps a bit xx

[Hidden in reply to weathervane]

Thanks but it doesn’t feel like a heat rash - I always had these when younger up my back and all over the place. Do you think we react differently to heat as we age or with Sjögren’s perhaps? Mostly now, tiny red bite-like pimples aside- I just get neuropathy type problems. Thinking there’s been a shift and location of my sweating has changed

[weathervane in reply to Hidden]

I agreed about location change, its not my body thats a problem, its my head and neck . My hair is soaking with rivers down my face and neck!!! I have tried honey and cider vinger in hot water , tea tree oil , a cold cloth on my neck and witch Hazel . So far the cloth and witch hazell are helping a tiny bit . I also drink pint of water . Its very embarrassing 🤓😡😓😓

[Hidden in reply to weathervane]

I just looked as it rang bells and I found this post from last year. X

healthunlocked.com/sjogrens...

[weathervane in reply to Hidden]

Thanks very much for that 😓 it rings so many bells . The drugs they use dry you up so thats a no no . It probably is an autonomic problem , and temperature control has gone haywire. I had to go into town to collect an item and i was so embarrassed , i had to keep using a handkerchief to dab at my face but my hair was soaked , I looked like i was having a massive hot flush but im way beyond that problem. I don’t think doctors think its a problem and pass you off .

[Hidden in reply to weathervane]

Yes I know what you mean. I had early and very uneventful menopause ages ago. I don’t think doctors twig even half the symptoms that Sjögren’s can cause🙄🤷🏼‍♀️Xx

[weathervane]

Update on my over heating 😀 i have found a stand for my handheld fan and it has helped a bit , or maybe im getting used to the heat a wee bit . My hair isnt coping either , it has become a frizzy mess . I think all the drugs i have had , steroids , general anaesthetic, pain killers etc have had an effect. I use treatments and argin oil to-no effect . I hate it when my hair is a mess as I always feel a bit more like me if i do my hair and put on some makeup . What is a girl to do 🤔🤔🤔