Not knowing if I'm hot or cold!: I don't know if it... - LUPUS UK

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Not knowing if I'm hot or cold!

Nikki246 profile image
13 Replies

I don't know if it's a lupus thing or to do with Methotrexate or totally unrelated. Just recently I don't seem to know when I'm too cold. When I'm too hot I know as I start to sweat but when I'm cold I have no idea. The other day after standing and teaching for several hours then doing my own horses I came down with a really bad migraine and felt sick. I couldn't catch my breath to speak very well and had to get help finishing the horses and to get home. Once home I went to bed with a woolly hat on a hot water bottle. I woke up 1.5hrs later and felt fine so it must have been the cold. Yesterday I went out in a Tshirt, everyone else had jumpers and coats on. I'm now making myself wear roughly what I see others in.

Anyone else have this problem or should I see my Dr? I really don't want to come off the methotrexate as it has helped in other ways.

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Nikki246 profile image
Nikki246
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13 Replies
Matilda7 profile image
Matilda7

Not quite the same but I too have a totally useless thermostat. Yesterday I went out in sandals not realising how cold it was, went into what for me was an overheated room, stripped down to a TShirt but had to ask for a blanket to warm my feet! Top half of me boiling hot, feet freezing cold.Wierd or what!?

in reply to Matilda7

That IS weird. No aches or pains though?

Matilda7 profile image
Matilda7 in reply to

No, joints behaving pretty well..but eyes are also weird..have a continuous visual disturbance which has baffled ophthalmologists, neurologists and rheumatologists.....

in reply to Matilda7

Do they make you go to the ophthalmologist once a year?

Matilda7 profile image
Matilda7 in reply to

They don’t make me do anything! But I do see my optician once a year at least, and have also seen ophthalmologists several times over the last year.

in reply to Matilda7

They are checking for macular degeneration. Sounds like lupus patients could use marijuana for many reasons!

Matilda7 profile image
Matilda7 in reply to

What do you teach?

in reply to Matilda7

Third grade. 8-9 year olds

Florence91 profile image
Florence91 in reply to Matilda7

Matilda have had the same for years & can't get a straight answer! When I was younger, menopause, doc can't cope with womens' things, then its methotrexate, sometimes my consultant says its lupus... but now I've finally stopped methotrexate (last 2 months) it's actually worse. I'm at hosp on Weds and will try to discuss again but don't hold out much hope as I have heart & lung things to discuss too. I have to say whatever it is, it is horrible and persistent.

Jbsnide profile image
Jbsnide in reply to Matilda7

I'm not alone! It happens to me too!

I didn’t know until last may that plaquenil can blind me

Florence91 profile image
Florence91 in reply to

Have been on it for 10 years with no problem but you need annual eye checks of the retina and visual fields - VERY important

All three women that have responded to this post say the same thing. They don’t know if they’re hot or cold

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