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Does your thermostat work?

Your internal one, not your heating’s ;D

It’s 70 degrees here in my living room ( that’s 21 for you metric people) and I’m sat here in winter clothes:

Thermal knee high socks; fleecy slipper boots; cords; long-sleeved cotton top; medium weight fitted jumper; thick, bum-covering cable jumper, cable cardi that’s 30% wool and alpaca. You can bet your life that if I took a sock off and touched my foot it would feel cold, too…it’s 70 degrees in here, body, what is your problem!

I’ve spent most of the day feeling either cold or too warm; and taking things off then putting them back on again a couple of hours later. I never had this kind of hoohar before the MS (incidentally, instead of typing “MS” there I initially put “mess”, Freudian slip, much?).

Does anyone else have faulty central heating?

Nooo, but then I’m a lady of a certain age. :wink:

Several years ago, and long before diagnosis, I was staying at my mum’s whilst doing a course in London - in about February I think it was.

I had to travel back to Mum’s each night on the rush hour tube.

Now admittedly, the tube is hot, even in Winter.

But I used to get home to Mum’s, and could feel the sweat pouring off me. Rivers, running down my back.

One night, I told Mum, and she felt my back - which was dripping - and said: “Oh Tina, there’s something wrong with you!”

I snapped, irritably: “No there isn’t! It’s really hot on there!”

But mums know, don’t they? I should have listened.

I still get it now. Not all the time, but with only very minor exertion, and well before the weather is anything like hot. 20 degrees and I’m sweating buckets. I also wake up sometimes in the night, with nightclothes and bed linen horribly damp.

Mum has forgotten the incident years ago, and blames my age (49).

I tell her: “Mum, don’t you remember I was dripping that time, and you said then I was ill? That was years ago! It’s the disease; the thermostat’s broken.”

Of course, I don’t know how much age is adding to it. The last couple of times I soaked the bed with sweat, it was a certain time of the month, so was probably linked to hormones. Now I’m past that part of the cycle, it hasn’t done it again for a while.

Tina

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My mum blames my age (43) any time I mention night sweats. I try to tell her they’re a known MS thing, but every time she says how I mustn’t forget that it might be a hormonal thing. I don’t mention them any more, lol.

My periods stopped in 2011, after the doc took me off the pill in 2010 (didn’t like me being on it purely for convenience at the advanced age of 39…) I went through a mini menopause then, 6 weeks of hot flushes, then 4 months of blissful nothing. Come October my cycle started up again but was all over the place, seemed to be bleeding every couple of weeks, evened out by January, then had stopped again by Easter, had another 6 weeks or so of hot flushes, and not seen hide nor hair of periods since. My mum was adamant that I needed to see a doctor about them stopping. I did not. I didn’t care, glad to see the back of 'em!

But as I’m basically post-menopausal now, I really don’t think my thermostat problems can be blamed on my hormones. I don’t have sweats during the day at this moment fingers crossed I’ve had phases of them, but not for quite a while. I’ve had really bad night sweats, need to get up and change the bedding in the middle of the night bad, but not for a while.

I do have a milder form at night right now, they don’t disturb my sleep, but when I wake up my pyjama top’s damp on the front, like my bellybutton’s been leaking! Gosh body’s are weird!

OK, I have cold right foot/ankle & hand - my GP was happy to send me for tests but checked my pulse and said he expected nerve damage

And yes, I’m 44 and my Mum had a hysterectomy quite young, so I have very little indication of what/when to expect the change! Oh, and I’m hoping to start tecfidera so my little sister laughed her head off at me abut the flushing

Sonia x

Oh gosh, I know it’s not unheard of, but 39/40 really is early for the menopause!

Sorry to side with your mum on this one, but I reckon that needed checking out - especially if it’s not a known family thing - i.e. she was the same.

I mean, yeah, I’ll be pleased to be rid of them too - but if it had been more than ten years earlier than anticipated, I would have had concerns. Does your doc know? Has it never been queried why you stopped at 40ish?

Not that I think it’s anything to do with the MS, and if you’ve gone four years with nothing else untoward happening, we can say it’s unlikely to be cancer or anything, but I’m still left wondering why.

But assuming it was a natural, if early, biological menopause, I agree it seems unlikely you’d still be having transitional symptoms four years on.

I dunno, what is it with mums? Before I was diagnosed, mine was quick to say things weren’t right. In fact, when I was diagnosed, she even went so far as to insist she “always knew it” - even though MS had never, ever been discussed in the family - the only thing we all accepted I had was “a touch of arthritis” - as we then assumed it was. Plus she kept calling it muscular dystrophy for several months after I was diagnosed, so it’s quite obvious she didn’t “always know” I had MS - or even what MS was - but I digress.

Now we do know what it is, nothing’s ever MS. It’s always: “But you are 49, you know”.

“Yes, but you weren’t like this at 49, Mum - neither is anyone else I know! It’s the illness!”

Not that I’d wish it on anyone, but I’m glad it’s not just me with the night-time bed changes and the damp jym-jams.

I used sometimes to wonder if I’d had an accident of a different sort - and I do have a waterproof mattress cover, just in case that should ever happen. But no, I think it’s just leaky pores - not leaky anything else so far.

Tina

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I have the problem of not having good regulation.

I sweat a lot most nights.

In the summer I am too hot, sweat nearly all the time and am exhausted easily.

The cold, even just wind, hurts the bones in my face and too long the rest of my skull and neck. If I shiver I am left aching all over because it is so violent. Sometimes though I don’t shiver, I just get cold.

Can’t blame my age - I’m 60 and the menopause is long gone. My ability to correctly gauge the temperature is totally askew. I have a thermometer in my living room to make sure because otherwise i would just keep turning up the heat. As it is my house is always way too hot for everybody else and I’ll be wrapped in a blanket. In the summer it’s the opposite problem and I cycle ice packs and chillos all day

Jane

Can’t blame my age - I’m 60 and the menopause is long gone. My ability to correctly gauge the temperature is totally askew. I have a thermometer in my living room to make sure because otherwise i would just keep turning up the heat. As it is my house is always way too hot for everybody else and I’ll be wrapped in a blanket. In the summer it’s the opposite problem and I cycle ice packs and chillos all day

Jane

Night sweats and hormonal changes aside, I know my natural thermostat doesn’t work. I react badly to too much heat and to very cold temperatures. I shiver uncontrollably when cold and my MS symptoms become significantly worse when too hot. When on holiday in a hot country I have to keep cool by spending most of my time sitting in the pool or indoors with air con. The very first time I noticed difficulty with my walking was ten years ago while on a skiing holiday, I had a sauna after a hard days skiing and had to leave the sauna within minutes as I felt very ill, I struggled to climb the stairs to my room not being able to lift my legs properly as soon as my body temperature had returned to normal I was fine and continued my holiday un affected. Gradually over the years my MS has become worse but still temp changes escalate things till my temp returns to a normal level.

Jan x

Get someone to take your pulse - if it’s high, that may explain why you’re always cold. That was what happened to me. Now I’m trying to do exercise every day. I have been trying for more than a year. My resting pulse is still 90, which puts me in the ‘very unfit’ category but I’m no longer cold all the time.

Oh Jan, just the thought of a sauna fills me with horror. The first time I was affected by a hot bath it frightened me, because I didn’t know what was going on. Got in the bath with only minimal mobility issues; struggled to get out of it and could bearly walk…since then I have WWII baths, Churchill would be proud; water comes up just to my ankles and is nicely warm, but not hot. My direct debit for my water dropped by £8 a month.

I get really paranoid about potentially over-heating now, though I never have. In my flat other people are more likely to be a bit cold, than me getting too warm. I always try to get by with minimal use of heat and maximum use of layers to keep comfortable, just because of the cost. It’s heating elsewhere that I’m always a little worried about.

Reading these responses, it’s definitely reassuring to know I’m not alone in the lack of ability to maintain my own temperature, though it’s kind of cold comfort (ho ho…).

Tina - you’re right, I probably should get things checked out, but I also know I probably won’t But you never know! I have to have another smear test on the 23rd, in preparation for the Lemtrada, maybe I’ll remember and mention it to the nurse then. And if this smear actually nets some results, that might shed some light/reassure that things are ok down there. I had a smear in April as prep for the Lemtrada and got a letter saying the test had no results, either from not enough cells being collected, or a fault in the testing process, so I have to get it done again

my normal body temp is 35.4,doc and neuro said was low, but said no more. im always hot

Internal thermostat totally shot. Between 18-20C I’m OK. Below 18C I’m boiling hot, above 20C freezing cold. If I put warm clothes on I overheat and my muscles turn to jelly. Dress for summer all year round. Go to bed and I need loads of layers, takes about 90 mins before I start feeling warm, then I wake up in the night sweating and throw the layers off again! If I get really hot that’s hard to do as I have no muscle strength.

My stat is broken too…always look like I just showered as hair dripping wet from sweating…get rivulets running down back and front and feel really ill when at it,s worst …so draining on energy.

Nurse convinced it is the Gabapentin but it was the same prior to taking Baba.

Even now have cold fan full on due to heatwave. ( temp in room 12 degree,s )

Wearing cool band round neck and keep a spare in fridge at all times. Also have Chillow pillow

All helps but does not take away sweats and misery of feeling weak and nausea from body heat.

Ell

I can have a warm right hand side of my body and cold left side, especially hands and feet.

Very strange, don’t know what to wear!

Jen

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Hi, I am the same, always too hot or too cold. Never a comfortable temperature. It doesn’t matter what the outside temperature is, I can be boiling in the winter and sometimes cold in summer. Mostly, I am just too hot lol xxx

I dread heatwaves - takes my body a long tome ot adapt to hot weather.

I really wasn’t expecting so many of you to have similar problems! Since my MS cranked things up we’ve not had any prolonged hot weather in this area, so that’s in my future at the moment. Really I need to test that out somewhere safe, don’t I?

Maybe if my PIP claim is successful, and I get a little bit of pocket money, I’ll be able to do what my mum mentioned and get a taxi over to her some Sundays, and sit out in the back garden in the sun. Toast myself for experimental reasons!

I usually feel warm / hot, regardless of external temperatures. My physical body temperature is low, and gets even lower when I’m asleep - when we first lived together I nearly frightened my husband out of his skin - he decided to snuggle up in bed (I had already fallen asleep) but I was, in his words, “bleeding ice cold like a ******** corpse”.

That aside - its a case of Ice with everything, especially when I exercise, ice pack for the back of the neck, iced-water to drink - I’ve been thinking of getting a cooling vest.

I’m so glad that it’s not just me!

My neuro said that MS does not cause my night sweats (even though my old neuro said it did/could). When I told him I can tell when I’m going to have a bad week with my wobbles and cognitive probs because, the first sign for me is that my thermostat doesn’t work and I get really bad night sweats (have to change clothes and sheets). He just won’t have it at all even though my GP has done every test he can think of to see if there is anything else that could cause it. I also can’t deal with central heating more than just about warm.

Sue

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