Struggling with temperature control

Hi does anyone have the same problem with not being able to regulate their body temperature? I am starting to struggle with it now. Constantly switching between a fan and heated blanket. Mentioned to my gp a few times and told her I am struggling but the answer is always she doesn't know why. Any tips or advice would be appreciated 👍

[PMRpro]

In my experiences I'd say it was pretty usual for anyone with an autoimmune condition.

[Hidden in reply to PMRpro]

Thanks for the reply. So fed up with it now. I don't have an actual diagnosis of anything yet. Just wondered if that was related to a certain condition.

[PMRpro in reply to Hidden]

Most people do hate it. Someone in another forum a few days ago reported they found half a Kwells travel sickness tablet helped (hyoscine hydrocholide) and others swear by sage extract as used for menopausal sweats.

Layers you can remove easily are a great help. A thin cover at night that you don't throw off will help avoid the shivers. And during the day functional sports underwear that wicks sweat away from your body may be a relief.

[Hidden in reply to PMRpro]

Thanks for the tips. Night time isn't as much of a problem now. It's just through the day. Don't particularly like inviting people into the house as it's always freezing. Heating never on. Even in winter

[PMRpro in reply to Hidden]

They can always put a pullover on! Give them a hot water bottle and a blanket if they are really good friends. Lots of people use tennis and wrist headbands and the ice towels tennis players use to cool down.

[Hidden in reply to PMRpro]

I just got a really powerful fan that is doing the trick so far. Good idea about the hot water bottle. They say they don't mind but i feel bad for them.

[Dreamva in reply to Hidden]

Same with me. I just hand people a jacket or blanket and warm slippers. Lol

[suemh2]

Raynauds can cause temperature control problems. I have it in conjunction with SLE. I can have freezing cold hands/feet yet the rest of me is warm. It can be t-shirt weather and I have gloves on, or it's icy and I'm shedding layers like the dance of the seven veils. Psoriasis can muck up temperature control too, it all has autoimmune links. X

[Hidden in reply to suemh2]

Hi that's sounds exactly like me. It's a nightmare. Can I ask how long it took for your diagnosis of SLE?

[Hidden]

Hell is exactly what it is. I find it difficult going out. Can be roasting hot yet always need to take a blanket for when I turn instantly cold. Also cant travel too far for always needing the toilet. Can you relate to that too?

[HedgeEnd]

I'm exactly the same. Either too hot or too cold and have the thermostat on 17 as otherwise it is just too hot. Work is always too hot and I wear a t shirt or short sleeved dress in the winter. I prefer to have it cold at home and snuggle under a blanket if I get cold as it's easier to chuck it off when I get too hot rather than try to cool to the house down. I have UDTD.

[Hidden in reply to HedgeEnd]

Thanks for the reply. It's reassuring to know there are other people similar. I much prefer feeling too cold rather than being too hot. Did it take a while for your diagnosis? Mine is still under investigation. Very frustrating at times

[HedgeEnd in reply to Hidden]

Diagnosis of UCTD took about 6 years! I was told it was fibro before that. Now not sure if I have just UCTD or UCTD and fibro. Unless your bloods and symptoms are definitive it takes ages and sometimes consultants disagree so good luck x

[Hidden in reply to HedgeEnd]

Yes i have found that already. One consultant suspects lupus the other dismissed it straight away. 6 years is a long time. You just have been very frustrated. My bloods aren't definitive at the moment. More tests from my rheumatologist in may hopefully.

[Poshcards]

I am the same, one minute heating full blast, next fan heater on cold, no solution, sorry, but I buy the mini fans from M and S and put in my handbags to take everywhere I go. I think its a Lupus thing sadly xx

[Hidden in reply to Poshcards]

That is my life on a daily basis. Although i take a blanket out with me for when I turn freezing cold. It's the heat I can't stand. Sorry to hear you haven't found a solution yet. No medication to help with it?

[Poshcards in reply to Hidden]

not that I know of, been like it for 26 years xx

[Hidden in reply to Poshcards]

Sorry to hear that. How awful for you to be like that for so many years.

[Poshcards in reply to Hidden]

Yet another symptom us Lupies have to live with, I just go day to day x

[Hidden in reply to Poshcards]

Yes me too. I would love just to be a normal temperature. But being cold is much better than being too hot.

[lupette]

I have this too! I have had it for 8 years now. The Drs always think it's menopause related but I know that it isn't. I get hot and then cold and then hot all day and all night. Sometimes it goes so quickly from cold to hot that it makes me nauseous. I have night sweats where I wake up soaked to the bone and sometimes in the day I get so cold that the only way to recover is to take a hot shower. I often wonder if it is autoimmune related ... I have never heard of anatomic immune disorder but perhaps it's just been overlooked or is not widely known. I do have Raynaud's so perhaps having that explains this?

[Hidden]

I am exactly the same. There is an instant change from hot to cold with me aswell. I think it must be autoimmune related surely. Sorry to hear you've had it for 8 years. It must have been awful for you. I do have reynaud's too which has become worse. I am on nifedipine for that now. It helps a bit but not completely.

[chrisj]

Hi Sophie. I can identify with the body temp thing. I suffered from what I now know is Raynauds as a child. My mother used to make me sit with my feet in a bowl of warm water they were so cold. I dreaded the winters, just learned to live with it....

I'm now 72 and was diagnosed with SLE, Sjogrens and Raynauds about 14 years ago as well as asthma. My gp tested for hormone levels when I complained about night sweats and having to get up, shower and change nightwear, I bought a fan for my bedroom to help cope....yet in summer I'd have the heating on with family grumbling about the heat in the house when they visited, said it was like "walking into a sauna" but I was so cold all the time in the day. The test for menopausal hormone levels came back normal but nothing else was done..

Some time later it was a locum that wanted to know why things hadnt been investigated and he referred me to hospital. An appointment came through about 2 weeks later. I went for the bloods and found out I had mild Lupus. I'd never heard of it. The doctor assured me it wasnt life threatening and they prescribed hydroxychloroquine/plaquenil. Body temp is much, much better. I still get cold fingers but I'm managing it much better now I know what I'm dealing with. I hope you get to the bottom of your problems soon, I know how stressful it can get xxx

[Hidden in reply to chrisj]

Hi thanks for the reply. I have raynuads too which is worse now. So I am on medication for that. It helps a little. I seem to have gone the same way. All through summer I was frozen. Using hot water bottles. Now in winter the complete opposite. I don't understand it. Glad you had a bit of relief with your medication.

[Shorthouse]

Yes I get this a lot .i used to be a lot worse.i was about 49 when at my peak of attacks.i’m 65 and a lot better. Lupus flares come into it I’m sure ,I have been a lot better since seeing a herbalist??? Obviously at 49 i was blaming hormones.I had not had my lupus diagnosis then either.Try to cut down on foods that cause inflammation.Mind you I used to get hot when eating too.hope you feel a bit better soon.x

[Hidden]

Thank you. I'm not sure if anything triggers it yet. It just happens so randomly. It's -4 tonight and I have a fan on full to try and cool down.

[Florence91]

Yes Sophie, had it for 25+ years. I have sale. All sorts of explanations offered but none satisfactory! Lots worse on lower dose now of hydroxychloroquine and reduced prednisolone so has to be part of lupus. It annoys me more than anything else but never met a doc who was interested!!!!!!! I'm 73 now. Best wishes x

[Florence91 in reply to Florence91]

I have SLE- predictive text !!!

[Hidden in reply to Florence91]

Hi florence. Thanks for the reply. Oh gosh. Poor you being like that for so many years. I am struggling already and it's only been 6 months or so. I haven't got a diagnosis yet. Just suspected lupus. How long did it take for your sle diagnosis?

[Florence91 in reply to Hidden]

Sophie, it took years tho it was suspected after kidney probs- it can be hard to pin down as immunology not always helpful! Do hope you get sorted soon.

[Hidden in reply to Florence91]

Unfortunately I know it can take a while. There's not a week goes by where when i'm not in bed all day with flu like symptoms and feeling very unwell. It happens randomly too. Not sure if that's a symptom also?

[Florence91 in reply to Hidden]

It is rough till you get a diagnosis and some treatment and then time to find the right combo for you. Then you will start to feel better. Hang in there!

[Hidden in reply to Florence91]

Thank you. I am. The temperature control is hard to cope with some days. Just got a really powerful fan which helps.

[Ianrussell69]

I get very bad nights swets I can’t regulate my temp at night last week was the worst I’ve had in a long time had to change the bed nearly every night but oddly it’s just at night wife’s joking saying it’s the men,o,pores 🤣but #he can joke she’s doing all the extra washing

[Hidden]

I never have the problem with actual sweats. Just feeling absolutely roasting and nothing helps to cool down. Although luckily it has stopped at night. Just through the day, non stop change in temperature.

[CRYSTAL11]

Hi Sophie2009

I have massive changes with my temperature some times I am freezing and can’t warm up then the next minute I am sweaty and hot When I take my temperature logger it ca be anything between 35 to 40 degrees. Do you ever take your temp when you are feeling either hot or cold x

[Hidden in reply to CRYSTAL11]

That is my life on a daily basis. I haven't taken my temperature when freezing but when I am too too hot my temperature is always fine. Apparently that's normal not to have a raised temperature.

[Dorothee]

I wonder if you could tell me if summer or winter are different. My heating is on only 10_12 degrees In winter. Sweating on and of only in

Winter. Window open/close all day.

Nothi g has helped so far. Sorry

[Hidden in reply to Dorothee]

Hi yes they were for me. I was frozen all through summer. Now in winter the complete opposite. Need a fan and windows open, no matter how cold it is outside. My heating is never on now. Some days it's just constant fluctuating temperatures.

[bedfordlodgers1]

I have had a problem with massive hot sweats and am way passed the menopause. No one could tell me why so I end up testing my medication. First I found that Methotrexate was giving me cellulitis and so stopped that and now find that stopping the fentanyl patches has got rid of the sweats but now in agony due to my RA. Help

[Hidden in reply to bedfordlodgers1]

Hi sorry to hear you're struggling. Mine isn't the menopause either. It's a daily struggle with constant fluctuating temperatures. Keep telling the gp and asking for help but all she says is she doesn't know why.

[Willow1414 in reply to Hidden]

Hi Sophie

Sorry to hear your struggling .

Hormones play a big part in body temperature .

I suggest you change your doctor .

I have lupus/sjowgrens over lap and yes feel over heated quite a lot off the time , I think it’s because of inflammation build up in body , also my daughter who is in her twenties suffered with hot flushes , feeling over heated . (Menopausal symptoms )

it was found she’s got poly cystic ovaries , it’s quite common complaint for this problem . You need a second opinion .

Hope this helps .

Pamela x

[Hidden in reply to Willow1414]

Hi sorry you were struggling too. Regardless of the outside temperature. It's like my body can't make its mind up. Cold on a hot day and hot on a cold day. It's been all over the place for over 9 months now. It's hellish. I don't have a diagnosis of anything yet. Only suspected lupus. Do you know what could be causing the temperature dysregulation? X

[Willow1414 in reply to Hidden]

Sounds like hormonal . Ask your doctor for some blood tests , ie . Another doctor . X

[Hidden in reply to Willow1414]

They have done all different tests. I always assumed it was thyroid related. But my thyoid tests are fine. Apart from high tpo antibodies X

[Willow1414 in reply to Hidden]

Hi Sophie

I have autoimmune thyroiditis , under active , with under or over active .

Only under is autoimmune . You would not have a fluctuating body heat , you feel cold all the time , and have to have a hot shower for some kind of comfort .

It’s worth asking your doctor about polycystic ovaries . I don’t know how old you are , this does effect younger women , you kinda off go onto an early menopause .

It’s worth ruling it out .

Just try and eat as healthy has possible .

Try to cut out processed foods and buy organic if possible .

X

[Hidden in reply to Willow1414]

Hi willow. I have always felt the cold up until September last year when it changed to heat aswell. The cold I could handle but the heat is awful. I was wondering if that was common in Lupus? Not bring able to regulate your temperature. I am 36 years old. X

[Willow1414 in reply to Hidden]

Hi Sophie . I was only diagnosed in 2017 , although I had previously been diagnosed UCTD and thyroiditis . I do get overheated but not sure if it is due to lupus or menopause has I’m 57 .

Discuss your symptoms , even if you think symptoms are not related , with your consultant .

X

[Hidden in reply to Willow1414]

I have seen a dermatologist for skin rashes and she said consistent with lupus. I would need a biopsy to confirm. I am seeing a new rheumatologist soon for a second opionion as the first one was very dismissive. X

[Willow1414 in reply to Hidden]

Hi Sophie .

They should do blood tests and this should rule in or out , so you can get treated .

Good luck 🙂

[Hidden in reply to Willow1414]

Hi willow. There's no definitive blood markers at the moment. That's the problem. I know levels can fluctuate and sometimes can take a while to show in blood tests X