over heating

[yorkshiregirl44]

Is over heating a symptom of vasculitis. I have noticed i become unaturally hot and red when near direct heat such as near a cooker or steam.

Thanks

[PMRpro]

I don't an awful lot about other forms of vasculitis but I have polymyalgia rheumatica which is a large vessel vascultis and I - and quite a few others with the same thing - say we feel as if out thermostat has gone mad! A room above about 18C was far too hot for me, I didn't wear socks even in the depths of winter (we're talking outside temps of -9C here!) and ironing or cooking dinner was so uncomfortable! It is far better now, especially since I was put on BP meds - which most people complain makes them feel really cold!

[yorkshiregirl44 in reply to PMRpro]

Thanks for that..i dont have a diagnosis as yet, someofthe symptoms seemed to fit. Along withh the overheating i feel sick, really strange as iv always been able tolerate heat. This has happened a few times and i remember last summerwhen it was hot, i was booiling,sweating and bright red. I know somethings going on with my health just dont know what exactly.

Alot of these infamitory diseases have similar symtoms, what is it the seperates your condition from other infamitory conditions.

[PMRpro in reply to yorkshiregirl44]

It probably used to be called old age rheumatism! We get very stiff and have painful muscles - which doesn't sound that bad I know but believe me it is disabling and HURTS!! If it is the simple uncomplicated version it responds to a moderate dose of prednisolone like a miracle - but there is nothing else that works, it doesn't cure it, just makes the symptoms manageable until (and if) it goes into remission, and of course too much pred can cause all sorts of problems. The worst thing is that some patients go on to a worse form called giant cell arteritis and that can make you blind as well as ill.

Most of these things could be thought of as a row of signs and symptoms on a shelf - the label you get depends on the symptoms you get landed with! You can have several people with a similar basic set of symptoms - but each of them has something else on top which makes "their" disorder what it is and how serious it is. PMR doesn't kill - but it is very unpleasant to live with.

[yorkshiregirl44 in reply to PMRpro]

Thank you...iv got another doctors appt on monday and really do need to find out whats going on. Its the feeling on unwellness as well as pain with me that is the problem, so i guess it could be one of many things.

[Nadine99]

My husband has temperature issues, he has WG. He describes it as having no thermostat, can't regulate the heat in his body. Something you have to live with and who knows which of the medications will or will not help.

[yorkshiregirl44 in reply to Nadine99]

Im still at the very beginning of trying to find out whats wrong with me. My doctor does not seem to be running the right tests and may have to go private. Any ideason the starting point would be greatly appreciated. Thanks

[BronteM]

No thermostat here either! Both too hot and too cold are a problem....don't like hot weather as I can't cool down, or very cold as I can't warm up. Since I've been diagnosed (Takayasu's) I've assumed that it's because my arteries are in a mess and this means that my circulation is poor and the usual ways of keeping a regular temperature aren't there.

Wearing layers helps a bit. I keep to loose cotton as much as possible and add and subtract as I need to. Thank goodness for all the lovely scarfs about at the moment; they are easy to take on and off, and are there to dry your glasses too. Essential if you get hot spots and your glasses steam up!

You may find that it's a mixture of internal and external heat that causes the most hassle...but I do agree that serving up a meal looking like Baldrick on a bad day is not good!

[yorkshiregirl44 in reply to BronteM]

Happy to say youv kept your sense of humour which is essential dont you think. There are so many different types of this disease and its all a bit confusing, a diagnosis would help though...thanks

[HiveMind]

No thermostat for me! Mind you the menopause doesn't help much either so I have periods of utterly debilitating sweating which leave me freezing cold until the next bout of sweating. Tbh, I could cope with the hot/cold feeling but the drenching sweats are horrendous and happen at the most inopportune moments! I'm not even safe in bed because they wake me up at least a few times a night. Even at this level, it appears that things are improving slightly of late, not sure why. However I have found that alcohol, fizzy drinks and too much sugar make thing VERY much worse.

(Btw BronteM, I love your "Baldrick" description!)

Hope this helps someone.

[yorkshiregirl44 in reply to HiveMind]

It does help thanks.horrible feeling when it happens whatever the cause.

[Suzym2u Moderator Vasculitis UK]

John has body temperature issues, feels the cold terribly, which then makes him feel lathargic and tired. Then to the other extreme of becoming very hot, especially in the night, with hot legs and feet. John has GPA ( Wegeners Granulomatosis ) diagnosed 13 years ago this April.

[rrahman]

I know I always feel cold. Definitely.

Last summer I remember feeling really warm similarly I could tolerate upto 30 relatively easy. But I was very sweaty last summer. But my consultant also advised me not to be under the sun too much because of all the meds were on and that as our skin has become somewhat thinner it increases the chance of us getting skin cancer. So I tried avoiding the peak hours.

Now I just feel cold ...but I've always hand cold hands and feet. Always

[HiveMind]

Just had another thought (so the other one wouldn't be lonely!) but I'm feeling the cold very much now as I'm having renal problems. I had a chunky cardi on yesterday with the central heating on full and a blanket over me! Still wasn't warm!?!

I've read that if you're having renal probs' you feel very cold. Maybe those of you who feel cold permanently could check up on this?

[Barnclown]

My rheumatologist is treating me for systemic lupus, and watching me for vasculitis, but I'm on mycophenolate which is used to treat both conditions.

A lot of us on the HU lupus uk forum also get similar over heating symptoms to those your replies here are describing. My particular version of overheating is diagnosed as 'erythromelalgia simultaneous with raynauds' and especially affects my head + hands + feet. The raynauds & scleroderma assoc website has info on erythomelalgia under associated conditions.

I hope your appt is productive. If poss, try to take along photos of your symptoms at their worst.

Good luck & take care

[Winter64]

Im so glad to see you post this, I started having the same thing last year and didnt mention it to my doctors because I thought they would just say it was my age (Im 49) even though I know it isnt, any exertion at all has sweat running down my face, most attractive! I also have Raynauds so thought it was very peculiar with freezing hands and feet and boiling hot everything else, I have given up drying my hair because its soaking wet again within minutes from the heat of the hairdryer. The warm weather has me looking lovely by the time I get to the bus stop in a morning and thats at 6.30am. I will now definitely mention it to my consultants when I see them next.

[lovenothate]

Same for me. The smallest amount of exertion provides an instant reaction of perspiration pouring from my head and with a bad episode I get extremely weak and trembly and the only thing which seems to solve it is to sit in front of a fan. It takes anything from a few minutes to an hour or two to recover. As a result I frustratingly have to tackle everything very slowly, especially the whole showering / getting ready for the day routine. I have Behcets.

Kind wishes,

Will

[RareLily]

I've had this frustrating issue too. In my case, I trace it to steroid use, since it generally occurs during the same hours. An example would be, if you notice that you feel these heat surges mostly around 11 am or 6 pm.... like clockwork, it is most probable that your natural circcadian rhythm is thrown off if you are also on a common vasculitis treatment, any form of prednisone. This happens since steroids eventually will not only shut down the adrenal glands, but also affect the hypothalamus ( a tiny gland) located in the brain which regulates many hormones and systemic body functions.... including temperature, sleep, metabolism, respiration and heart rate.