LUPUS UK
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Not knowing if I'm hot or cold!

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.

13 Replies
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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!?

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That IS weird. No aches or pains though?

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

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

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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.

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

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What do you teach?

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Third grade. 8-9 year olds

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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.

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

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

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

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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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