Are hot sweats normal for pbc

[sandgroundergirl]

It all gets so much worse at night, the sweats are getting more often

[Hidden]

They are for me, I had a hysterectomy 21 years ago so it's not that and I am on HRT anyway.

This was the first sign I got that I was ill, I woke up one night and me and the bed were soaked from head to foot, all the sheets and quilts had to be changed up to 4 times a night and I was awake most of last night sitting on the bed dripping. I would not have gone to the doctors had it not been for this.

[carrot14]

At first I thought it wasn't part of PBC, but the more I read about it the more I think it is normal. I've been on HRT for almost two months after I was on a different therapy before switching to something different this time due to hot flashes. Doc stated it would probably be about 2 to 3 days before I would get over my hot flashes and sweats. It's been one month now, and I continue to sweat all of sudden, nothing like my hot flashes when I first hit menopause. These are different, I feel that my body is overheating. I can go from sweating profusely to shivering within minutes. No one seems to think anything of it, and they all blame it on hormones. I did read an article once that stated "a dysfunctional liver causes the body to overheat. The answer goes back to Chinese medicine which explains that when the liver is overworked or under pressure, it generates too much heat within itself. Because the liver is such a large organ this causes our whole body to overheat. The excess sweating is a reaction of the overheated body to cool body temperature and allow increased excretion of toxins through the skin". I concur with this, it is related to my PBC and after reading there are other members like me, I'm not alone.

[Hidden]

I also have hot sweats at nights and often have to change my sheets. This has to be caused by PBC as at 71 years old I am way past the menapous ( sorry spelling bad ). I have found nothing that helps, sorry.

[Disy]

I am very much a newcomer to this condition but I also get very hot. I always have to have a foot out as my thermostat control lol. My partner justs laughs but have to say not so funny when I am throwing the blankets off during winter. Keeo well everyone.

[Val02]

I'm with Disy - hang a foot out of bed for temperature regulation!

[Hidden]

That's so funny as I sleep with my feet stuck out of the sheet as well, well not funny ha ha but you know what I mean. At the moment I am sleeping starkers and with just a cotton sheet over me and still heating up, I woke with dripping wet hair ( or what's left of it ) this morning I also go from hot to shivering during the day.

Somehow I think some of the symptoms need re writing.

[Gioielli]

I also suffer from hot sweats and have done so for the past twenty years. I believe it is a symptom of the PBC but GP reckons it is menopause!! I also think the symptoms for PBC should be reviewed as so many of us suffer from this. However I don't suffer too much from the itch and when I asked this' question before on this site many others didn't! Don't know which is worse! Also sleep with foot out of bed! Try to keep well everyone. xx

[Ellanvannin in reply to Gioielli]

I have the night sweats but they normally only start after I have had to get up to go to the loo. The sweat pours off me and my bladder area and my legs start to burn. Trying to get back to sleep is well nigh impossible.

I wrote a letter to Bear Facts about it a couple of years ago but never got any replies. I have mentioned it to several Drs and they just say "I don't know what that can be " I was diagnosed with PBC and sjogrens syndrome 8 years ago but for the past 9 months I have had all sorts of scans, blood tests and corony respiritary tests as they think I could have sarcoidosis. I have already had M.E. for over 30 years.

I often wonder whether they are all variations of the same illness.

The only thing I am certain of is that the symptoms are getting worse and instead of living I only exist .

Felt very sorry for myself today as several friends have gone on holiday and I did not feel well enough to go with them. I would hate to go and then spoil it for them. I don't smoke, very very rarely have a drink and eat a healthy diet and try to get a little walk every day. What else can I do.

[Hidden in reply to Ellanvannin]

I feel for you hun, infact i feel for all of us, no-one and I mean no-one seems to be taking any notice of how we feel, They just seem to want to tell you how you should feel, all i get is " Oh you're not that bad ".

Well thanks I am sweating like a stinking pig, scratching myself to death, Falling asleep all over the place, The only thing that does not hurt or is painful is my nose and my hair is falling out, it's a darn good job I have a good sense of humour :o)

updated to say my nose is now hurting as there was a hair and I tried to cut it out with the nail scissors........enough said :o)

XX Linda

[Disy in reply to Hidden]

Hi Linda

I love your sense of humour. It is very difficult with these symptoms. Nobody has the same strength of symptom or if any of them. Touch wood for me the itching is not that bad and I feel for the ones that it is insufferable. It does wear you down physically and mentally. I am noticing the fatigue now more than ever and bruising and headaches due to the extra super toxins my body is hanging onto.

By the way how is that nose of yours going. !!! HEHE!!

I'm noticing as you the reply is 'your ok or everybody is cold or everybody is tired..

Never mind have a cat nap whenever you can...That is why I love this site.. we all know how each other feels. I try to stay as positive as I can and keep doing what I have always done but notice I fall in a heap at the end of the day !!!

Keep well

Cheers for now

[Hidden in reply to Disy]

I fall in a heap about 3 hrs after I get up :o)

Nose is okay, can't stand a hairy nose.

You would think even by the amount of people who come on here saying they have just been diagnosed, that PBC is now getting more notice taken by the medical profession, but no, they just seem to treat it like something they can brush under the carpet, like was said to me " don't worry about it you could have it for years" This lead me to believe and say, so i haven't actually got liver disease then? to which he replied, Oh yes most definitely. I just wish they would explain it to people ( us Lot ) more clearly..... sigh.

It's looking more like if we don't do something about it no-one will.

[Disy in reply to Hidden]

I am hoping this Thursday when I get the results of my biobsy they may be able to help me with medication and some light on the subject. yes getting tired more often. Hoping meds will help that a little.

cheerio for now.

DI

[elianan54 in reply to Gioielli]

Same here, night sweats soak me on some nights. Had it for many years now, but GP says it's menopause. I don't think so.

[Hidden]

Hello sandgroundergirl.

I am 49, PBC diagnosed since Dec 2010 (fatigue and itching started earlier 2010).

I know that last year my monthly cycle started to get a bit erratic and then I discovered I am in what is known as perimenopause. I am without any problems really, not much difference from pre-last year. But last couple months at odd intervals now I have started to get the odd 'hot flush' or 'hot flash' as my neighbour used to call it. Know that is due to approaching menopause. Nothing severe.

I know at night when I relax around 9p.m. onwards for a couple hours before bed (watch a movie usually) I start to feel like I am warming up and it is usually my feet and legs from my knees down that seem to suffer when the itch starts in the evening.

On the whole I think it is more due to the fluctuation of the hormones once we reach a certain age, us women that is as I know there are several male contributors on this site. Given hormones are broken down by the liver, perhaps in PBC that is something else to be considered for us?

[highwood]

Hello All, My diagnosis came about because of my severe sweating, had hysterectomy at 27yrs old on hrt for 21yrs no problems. Taken off hrt in 2009 because of DVT, then the sweating started almost immediately, I felt as if i was cooking from the inside out. I really think hrt was masking the sweating.

My doc's had been watching my lft's since 2006 as they were high and put it down to large doses of steroids' as i had temporal artheritis (large cell syndrome).

I saw a new doctor at surgery, mine was on maternity leave. She started investigating all my problems and told me her job was to make me well. She had loads of tests done and i was diagnosed with PBC May this year. Had a Dexa scan done last week, results show i also have Osteopenia. Fracture risk inceased.

Saw Consultant today (Saturday) only NHS patient among his private ones. Lady before me was with him for approx 7 mins. I was in there for 4 mins., I time my appts. as my daughter came on first one and could not believe i was in and out in 10mins, and before my appt. time. I asked, as my bloods were near normal why was I still feeling like rubbish, he told me PBC was a long term disease, I must now take calcium and vitiaman D all in 4mins, Is that a record !!!!!!!!

Keep well all.

Sue