Okay, here's one for you. Tis the bane of my ... - Behçet's UK
Okay, here's one for you. Tis the bane of my life: hot sweats and unexplained fevers. Anybody...
Yes Di
Us women do suffer with this. I am like a radiator at times and have tried all sorts of supplements to help, but can't say any of them have really worked significantly.
The only one I do use when I have had really enough, especially in hot weather, is Sage Tea. If you grow sage you can use a couple of leaves in a cup of hot water to drink.
That's if you are into herbal remedies
I asked my G.P if it was o.k and he just shrugged and said he couldn't see why there should be a problem as it is a herb that is used in cooking all the time.
Andrea
Well, that's one I haven't tried - I'll have to give it a go.
My vasculitis consultant said these symptoms were quite common in BD. I have suffered from them for as long as I can remember (I had a total hysterectomy when I was 34 so knew they were not hot flushes). I shal try the sage tea though! Anything to help would be welcome. x
Likewise with the hysterectomy - I was 40. I have been consulting the GP regarding these night sweats and hot flushes for around 2 or 3 years now and I've been tested to hell and back. This makes me so cross - why does one consultant know this and another does not (cos I told my consultant too). Or, if he did know it, why didn't he put my mind at rest and tell me it was part of the picture?
I am determined that with this large group of us in touch and comparing symptoms we will somehow get the medics on board so they each know what's par for the course and what isn't.
I feel really cross you know. I guessed it was the Behcet's but that doesn't mean I wasn't worried about it signifying something rather more unpleasant.
Will get some sage this afternoon!
Just to add my bit. My periods ceased without any hot flushes about four years ago (just over 50). I've already mentioned that it was over 10 years before I was diagnosed - during that time I often used to feel feverish with mainly muscle aches which now I understand is part of BD.
Two years ago started on Infliximab and the hot flushes came on instantly - I started timing them to one every hour to hour and a half. It was bad enough to have to use face washers to dry the perspiration (also I'm positive my heart used to race).
I've been through a few drugs since Infliximab and probably get about four hot flushes a day (plus night sweats).
So my question is - is it age, medication or the disease?
Lesley
Well, according to Sue's consultant it would seem to be the disease! I knew mine wasn't hot flushes because of the hysterectomy but they are bad. The night sweats are so bad that I sometimes have to change my nightclothes four times. Nowadays when that happens I just go downstairs and doze on the settee.
The first couple of times I consulted the GP he didn't seem too interested then he had to come and see me in the middle of one night (waterworks before that was all diagnosed and sorted). He saw the extent of the sweats and sent me into hospital. Nothing was done immediately, I was just sent home and told to await an appointment.
The appointment eventually came through the post and my doctor told me he was investigating for Lymphoma. Now that was really bad because a close friend, the same age as me, had just died from it. Needless to say, it wasn't lymphoma. In fact, no reason was ever ascertained.
I had an inkling it might be the BD and I also thought it could be the steroids or any number of the medicinal cocktail I take. Nobody ever came up with a definitive answer and to this day I haven't a clue about what causes them. Mostly I'm not worried. Distressed, yes, because it is very unpleasant and can be extremely embarrassing, but not worried.
Sometimes the water just pours from me - mainly my upper back and, strangely enough, my shins!
Really I suppose what I'm saying, Les, is that I'm in the same boat as you. I know it's not age but is it medication or the disease?
I haven't decided how to play this yet, I will probably just mention the evidence here to my consultant and see what happens.
The strange thing about my fevers/heat is that it doesn't sh. It doesn't show up on a thermometer !!
It might rise by .2 or .3 or something but certainly doesn't reflect what doctors call a fever and yet I am clearly feverish.
Is this the same for others ?
Hi all, I suffer from this too. I have had Behcets for a very long time & it has gotten worse as I've got older. I had an hysterectomy in my twenties so it has nothing to do with that. Fever & night sweats is, unfortunately one of the Behcets many symptoms but it is always worth mentioning anything new or different to your consultant/doctor if you are concerned about it.
At leat we have each other!
Exactly the same Andrea! That time the GP was here and saw the problem for himself he was amazed to discover that my temperature was normal! His response was 'well you must have an infection and all that sweating is keeping your temperature down!' I allow him to say silly things tho - he was responsible for my initial diagnosis and he always listens to things I tell him.
I know Di
It drives me mad really because I have actually ended up in A&E having been sent by my G.P because of feeling so unwell and not able to breathe properly. They take my temperture and work out I haven't got one and say it cannot be an infection.....then never look any further or write it down to a panic attack.
The sweat is pouring off me, I am red and obviously suffering and still they say they can't find anything wrong so they don't even try and advise me.
I am not the sort of person that panics really, in fact my G.P complains to me that I tend to leave things too long before coming to see her....I reply that she might as well set up a bed for me in the surgery if I was to come in everytime I had a symptom.
I think like your GP in that the continual sweating is keeping down the temperature, that's what it is there for.....to cool us down.
My expectations regarding doctors has definately changed over the years. I now know that they really only have a small armoury for autoimmune conditions and no matter what the name of the condition is,, the medications are basicly the same for all of them.
They have limitations in respect to the machines or tests they can perform and I accept that.
But all I really expect now is respect and openmindedness......sounds simple but frequently is missing.
Andrea
Sound awful to say, but its nice to know that other people have the same issues!
I have had night sweats since I have have had Behcets, generally coinciding with a flare, or running up to one.
The sweats became worse last year, wasn't sure if it was my 'age' or other reasons, and asked G.P for a blood test to confirm if it was hormone related, only to be told I was too old for such a test. Nice.
Having said that, it wasnt long before the other signs came along to let me know it was a flare. At least I knew where I was then and could mentally deal with it. Still ongoing though, waking early hours sweating cobs. I need the windows open and a fan on - not a cure but it helps a bit.
I know Evening Primrose Oil is supposed to help if its a hormonal problem, has anyone had any success with this?
Think I will give the Sage Tea a go - nothing ventured.......!
