Hi everyone, my first time on here, so am hoping my fellow pbc suffers will understand me.Does anyone feel like they have hot legs at night

Sometimes feels like they are going to pop, then they ache, this is then followed by the dreaded itching everywhere.I feel like am going mad !!! Only diagnosed in jan 2013, which has taken a lot of trips to the g.p and the usual tests for pbc.Now have a positive diagnosis alongside pernicious anemia.Fatigue is the worse symtom for me as i've always been so active.If and when possible i take a quick 45 min nap to re-charge my batteries at some point in my day (difficult when at work) i can now do this without feeling guilty.Before i used to struggle on to the point i felt very sick and dizzy.Well i hope i havent bored anyone, but i found it comforting to read other peoples stories and symptoms that you can relate too.so i guess all thats left to say, is keep positive, only do what you can do as tomorrow is another day,good luck to you all and best wishes

7 Replies

  • Have you tried eating less fat in your diet? I have had hot legs, once before I got diagnosed. I ate a lot of fat in one meal and then got the symptoms. You do need fat in your diet but can reduce it, which may help.

  • Hi thanks for the tip, but am on a low fat diet as i dont have a gallbladder, and always eaten very little fat in my diet since.I did wonder though if what we eat varies our symptoms to some degree.Thanks for your response though.

  • Hi fluffpuff...I agree certain sorts of foods make your body react differently re bloating etc..fat, white flour products, pies bread etc. I'm ok with Pitta breads, wraps, oh and chocolate is all good ....now that would be awful if I couldn't eat chocolate lol .when I cut all the lovely but bad food out it really helps with my balloon belly as I call it :/

  • I tend to feel my feet get hot at night from around 9p.m. onwards when I put my feet up and try to relax awhile with a good film before bed. I then do start itching around 11p.m. myself. I know that when you feel hot you do tend to feel the itch more as I've found.

    Over time you should start to feel much better if your LFTs start dropping slowly at each blood check. MIne have dropped considerably altho' still abnormal but with PBC as I asked, we aren't considered to have normal LFTs and there is what is a normal range for patients with PBC. I apparently am in the normal range for PBC now. I was diagnosed in Dec 2010 and I know for me, it took at least 2yrs to start really feeling like I had made some headway getting to grips with it all and feeling more like the self I knew pre-PBC.

    Fatigue is awful as I know as back in 2010 I could come home from work, sit down and just drop off into a deep sleep, no evening meal was preapred and then I'd go to bed and wouldn't have eaten for about 18hrs before breakfast and work again the following day. Wouldn't want to get like that again. I know some with PBC tend to suffer from fatigue more than others and also the itch seems to be with some, not with others. Not sure what is the worst but I'm sure we'd all say we would rather have neither!

    Twotulips has also mentioned fat as I've always taken care pre-PBC and now I try to not eat much of it with having PBC. Regardless I cannot work out how some days if I think I shouldn't have eaten something that does have a bit more fat in it (eg a portion of ice cream after tea now it is supposed to be the British summer, if you can find the sun that is as not had much of it again!), I don't actually suffer with the itch that much at night. I think with fat, I must sometimes get the balance right with bile flowing in the system and the fat intake as I cannot find any other explanation. Some days if I think I've not eaten as well as I should, I think I'm going to have a bad night when the itch starts at 11p.m. but I don't and vice-versa.

    I know in the last few months for some reason I've started to feel hungry more once again. I know I still couldn't eat a huge meal, haven't for years, sort of tapered off as I got older (I am 49 by the way). I also somehow think I'll not be one for gaining any weight as the yrs plod on with PBC due to the fact that I can toss and turn and fidget all night when I had the itch so expect that burns up the calories and little wonder I get up of a morning and feel really hungry. Best time for me to actually eat is morning until mid-aft., come evening meal time I'm not that hungry most of the time so don't have much on my plate then.

  • I guess its all a bit of trail and error, and find out what works for you and identify certain possible triggers if any at all.I find if i dont eat much or leave long gaps between meals i suffer more pain in my liver region.Am guessing thats the flow of bile etc.I intially lost a lot of weight but now seem to have piled it on, but that maybe as i do less exercise due to the extreme fatigue, but also i question whether some of these symtoms can be due to hormone levels, ie poor concentration, nausea, fatigue and related to the menopause which has now started.

    Best wishes

  • I definitely agree with you there fluffpuff64 with thinking some symptons can be due to the onset of menopause. I know I started what is known as perimenopause last year (aged 48). I've never had a problem all my life with my cycle and so far so good. I've had a couple of hot flushes or flashes as I called them recently but nothing so far that is bothering me. Good thing I am finding my cycle has spaced out further but still regular. Given women who have completed menopause can start to suffer with bones and bones can be a knock-on effect from having PBC due to poor absorption of vitamins and minerals (especially Vit D that is made in the body due to absorbing sun rays) it is time to start taking foods/drink that have a good supply of calcium. I originally had borderline Vit D result but when tested again was found to be normal as I have been utilising the sun a lot more than I ever did (never been a sunbathing or sat much in sun).

    I think nausea can be part of the hormonal system as can poor concentration at times. Apparently you can take a blood test for hormones checks but I myself will steer clear of that. To me hitting the menopause has always been something I was brought up to just accept as a natural thing. Presently I'm pretty much asymptomatic there so I'm not concerned.

  • Do yOu have an under active thyroid? this will make you feel very fatigued and can make you put weight on esp when your levels are wrong its commonly associated with pbc

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