Do any other Pbc'ers suffer from this, particularly after even mild activities? I sweat so much that if Im not careful, become quite dehydrated, and it has also become a problem from a social perspective. All the docs don't see it as an issue to be concerned with, but i find it debilitating and socially embarrassing. It has worsened in the last few years and l wonder if it's related to PBC?
A very 'wet' query
Dorothy
Hi Dorothy, I suffer terribly from this, especially at night, my bed clothes are soaking wet most nights, it is absolutely horrible. I have mentioned it to Drs on numerous occasions and they just shrug it off as if I'm imagining it! First they told me it was to do with the menopause, this was when I was 43 years old, I'm now 61 and it has got progressively worse over the years. If anyone could tell me how to control this I would be very grateful
Im the opposite, I hardly ever sweat anymore. The best I can manage is for my skin to feel slightly damp to touch, and that happens about twice a year. Mentioned it to the doctor and was told its all part of the "autoimmune thingy".
It is nights that are my problem. usually after spending a penny, My bladder feels as if it is on fire and the sweat pours of me. Even on the coldest night I have to lie on top of the duvet. The minute i get up I go to the other extreme and the circulaion doesn't reach my fingers and my temperature can be as low as 34.
I have mentioned this to several different consultants and they just shrug and say "never heard of that before" At the moment I am despair as after being diagnosed with PBC 7 years ago at my last appointment with gastro which I waited 7 months for. She spent most of it talking about me caring for my handicapped daughter , who I had never mentioned to her,
In her report she said that she didn't think that I had PBC and my AMA was a positive negative whatever that means.
I am also being tested for sarcoidosis. My appointment for that consultant was cancelled from last week to September 17th.
If only we could transfer our feelings to them for a short time. They would soon start to take notice!!! and keep our appointments when we should have them.
Hi Dorothy, I also suffer from hot flushes and excessive sweating during these. Also told by doc it was the menopause but twenty years later it is still happening and don't believe it is the menopause any longer! I asked whether or not other PBC sufferers also had this condition on here a few months back and it appears that many of us do! No idea how to make it more bearable though. Just another symptom we have to put up with. However, I don't seem to suffer much from the "itch", so that is one thing! Take care, Julie
Hi Dorothy I suffer badly from "Sweats" it is because of them that my dr had autoimmune test done, I had been on hrt patches for 21yrs but has a dvt so they took me off it, sweats got worse and still having them. Going to Dr's 2moro so will see what she say's, any info I will pass on. Take Care
Sue xx
Hi all, I suffer from the sweats too, I'm 43 and I've been told its the menopause too, I have even prescribed the mini pill because of it. Even with the mini pill I get the sweats, the are so bad the water just drips off me. I just hope that one day someone will be able to give us PBC'ers some useful help and treatment to our symptoms, instead of dismissing us. Sorry about the little rant, it's just that our condition makes me frustrated, as not many people, or professionals understand our condition, and the seriousness of it too.
I get terrible sweats as well and it's nothing to do with the menopause as I had a full hysterectomy 22 years ago, ( when I was 40 ) it makes no difference if I use HRT or not I sweat with it or without it, my husband has had to get up and change my bed up to 4 times in one night as the sheets were soaked not just damp but wringing wet. no one takes any notice whatsoever, I am fed up with waking up soggy with my hair plastered all over my head, it's a very bad way to start your day. I also lie on the top of the bed and only have a cotton sheet and a cotton cellular blanket even in the winter. I am starting to heat up now as I am getting annoyed even thinking about it.
Yes all I too suffer from this. I was assured it was the menopause and was put on HRT patches but still suffered from sweating, especially at night but not so severe. That was six years ago. They said I had been on for so long that I was weaned off HRT slowly. I am now back to sweating heavily all the time. My face is always very red and find it difficult to sleep at night. I bought a special cooling mattress and pillow but they make no difference. It is getting so depressing. 
I have PBC and do suffer from sweats. However, I also have a number of friends and relatives who also suffer from sweats who do not have PBC. Many of these people suffer worse sweats than I do and one is now in her 80s having suffered since the onset of the menopause in her 50s. Very difficult to establish a link.
I often can be seated or lying down with no activity and become very warm, sweaty across my head, chest, arms, legs and stomach. Often dizziness (loss of balance) and thirst take over and I am left feeling very exhausted and dehydrated. It seems to come in bouts of 5-15 minutes and I wonder if they are hot flashes (I am 50) or related to PBC.
Ladies can continue with hot flushes (from menopause) well into their 70's,a bit of a daunting prospect.
I'm just the opposite, no sweating, no moisture in eyes, barely have tears when I cry. My mouth is also dry, I have trouble with food sticking to my teeth.
you asked Dr about Shogren's Syndrome'? (spelling?lol)
I had my full hysterectomy when I was 40 and was put on evorel patches I didn't have any sweats at all on them, then one night when I was 57 woke up drenched three times, it was as though I had had a shower in the bed, from then on I went for loads of tests and the outcome was I have PBC, If I hadn't of had the sweats at that time i wouldn't of known I was ill so to me there is a link, I can put the same HRT patches on now and still sweat like anything, the HRT makes no difference at all.
Thanks to everyone for your replies. While Im sorry to hear that others suffer from xs sweating, it's comforting to know Im not the only one with PBC and sweating. People who don't suffer from it seem to just pass it off as a minor annoyance. it's anything but, and i thought i was going nuts. I spend my life carrying a towel everywhere so l can mop my hair which is usually dripping and plastered to my skull. Forget style. Doesn't exist! i,ll end my rant now - sorry!
Cheers, Dorothy
I too get these and was told it was to do with the menopause. It happens as often as every 30 minutes during the day and is socially embarrassing as well as being really uncomfortable.
I find this thread very interesting - there appears to be quite a weight of evidence that these "hot flushes" are PBC related and not just menopause. How can we get this sort of evidence to the attention of the medical profession? Is this something we should tell the PBC Foundation or LiverNorth or one of the PBC focused hospitals?
I am 45, diagnosed 7yrs ago and have just recently, over the last 6 months started sweating, not menopause as blood test ruled this out but it is so embarrassing, I back away when someone comes to hug me, my armpits are constantly wet! As for nights, hell, we recently came back from a camping trip, my partner was packing up my sleeping bag and commented on how wet it was!! X
I have had this problem with excessive sweating when I move around. Sweat drips off my head and runs down my face into my eyes. It's embarrassing to have people always asking me if I'm okay. I am always hot. I have been diagnosed with Fibromylgia so not sure if that's related to the sweating. I live in Southern California and don't wear jackets because it's never cold enough for me. I never used to have this problem. I am a nurse and work in Anti-aging medicine. I had a doctor just recently address this issue. He said it's due to lack of minerals. I will try to dig up and article he wrote and post it here.
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Does anyone suffer with profuse sweating?
Early pbc
