Can someone send me a link to any info about the sack that some say your liver is in as I can't find and info about it and I have a bad pain in my liver today. I am also itching to death, as soon as I got in bed last night I felt as though a load of wasps or flea's had jumped in with me and they are now zooming round in my trousers, I fear I will have no legs and stomach left soon, last night in bed I was wishing I was a dog, I was itching from the neck down.
Liver sack: Can someone send me a link to any... - PBC Foundation
Liver sack
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Hello again dollydaydreams.
Well I have no idea there about some 'sack' that you have heard about, new to me.
Not so sure there is any 'sack' thinking about it?
Oh dear, aren't we both (and others on here) suffering at times with this damn itch. I too can really feel for others with this itch. To me this is the worst part of having PBC. I know there is fatigue and I had both back in 2010 but I think I'd rather take the fatigue as opposed to the itch, at least I might be able to get a decent night's kip more.
I have started bathing once again in Epsom Salts. For the last few days I've not been too badly with the itch at all in the evening tho' I have had it during the night but not overly as bad as it was up until recently. Holland & Barratt sell something in a large drum called The Eco Bath and I bought the Epsom Salt Bath Soak that 'may help' eczema, psoriasis (I have neither) and sensitive skin. It has 2 added ingredients, Citrus bergamia which I think is bergot oil that is used in Early Grey Tea if I am not mistaken and the other is Santalum album which I don't know what that is. My H&B only stock 2 sorts of this as there are 8 different ones in total. I checked out the Co. website yesterday, can buy direct from them. They are not cheap but I'd say you can get 4 baths out of the large drum. I used to buy Epsoms in a tiny tiny drum at Boots but not sure if more economical as Eco Bath is 1kg weight.
I have likened the itch to wasps for some time or falling in a patch of nettles, the only real way I have to describe it really. I do think that others who haven't got this itch do not understand it at all, how distressing and uncomfortable it can really become at times.
Mine follows a distinct pattern I have noticed. I seem ok from rising in the morning, the itch tends to have gone by 6a.m. latest for me after starting around 11p.m. fhe previous night. I am then seemingly ok during the day but by around 6p.m. I start feeling the prickles of it all about to start in motion. My torso seems to get it in the evening but by the time I have gone to bed it is my feet where it seems to end.
I don't think it is possible to actually eradicate the itch now due to the fact that by eating every day, I know that is how the itch starts up, during alter digestion it seems.
I watched an interesting programme on tv the other night, one I had recorded sometime last week. About what is in our medicine cabinets. There was an article on achy muscles and what muscle rubs did for them, the ones that heat up and the ones that cool the area. I already figured out for myself long since that if a part of my body has one of the cool rubs on it (I sometimes find I get a bit of an achy shoulder, originally thought it was due to PBC after diagnosis but I know now it is wear and tear. The recent weekend, I was dragged on my arm by a 5yr old when out and about and the following day I could feel that strain and slight ache on my shoulder). I find that by using white Tiger Balm (Boots and also Superdrug sells) on that small area when I go to bed (only when I am aching that is, not all the time) the coolness seemingly distracts from the itch. This programme said the very same regarding achy muscles and these rubs, there was no distinct difference between a hot or cold rub. The cold tends to have menthol in it. I can no longer stand the hot rubs, they just irritate me nowadays I have PBC.
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Well this is what I don't get when people say it's not your liver that causes pain but the sack your liver is in, I would just like to know where it's come from as has been quoted quite a few times on here.
My problem with the itch and my darn skin is I cant get in or out of the bath, last time i fell getting in and twisted my knee and no way could i get back out,, I even emptied the bath and dragged towels in to line the bottom and the sides to see if i could get enough grip to drag my self out, I fell twice and husband found me huddled up in the corner of the bath shivering and covered in bruises, as you know mike is disabled and his spine is curved ( now going quite bad ) well he managed to drag me out buy grabbing my under the arms and round my middle and lift me up far enough that i could throw a leg over the side, I will not try that again it was like watching a comedy show looking back now, but i sure would love a soak. X
My sympathies to u I have been living with viewing to greater and lesser degrees 24/7 for 14yrs now tried many things over yrs to try to alleviate it but sadly to m avail. Things that have found lessen it are avoid foods high in fat, sugar and spices. Chocolate specially found makes mine worse and very spicy food which is shame as my fav food is curry! I just go for the milder ones now. Also onset of infection and any stress makes it worse. Also some antibiotics and pain killers specially codeine based ones make it worse. Basically I follow a healthy diet, take high dose Vit c to prevent infections and avoid pain0painkillers opting for heat r cool packs to relieve paix. The liver sack people refer to is the liver capsule. I only felt severe pain there afterI I had liver biopsy few yrs ago but injection of pain killers got rid of it. Recently had lot of pain in right rib region above where liver is and been told this is bilary colic as my gall bladder inflamed with stones in it.
Hello mayday-Yeah.
I have found in the last 5yrs since I have had the itch but only 4yrs diagnosed and on urso that trying to figure out about this itch can be a bit of a tricky one.
I have come to believe the odd days I might experience the itch or it is not very impacting on me at night (I do get odd occasions like this) then it has to be due to what I have consumed during the day and have somehow got the balance right. My theory anyway. I think the more fat we consume (chocolate is high in fat) could possible be a case we can tend to itch more as we will have considerably more bile released into the system (as it breaks down fats) that then has to be resolved in our system.
I don't tend to eat a lot of chocolate, never did pre-2010 when I started to itch. I do like throwing some cocoa powder into a bowl of instant porridge though at breakfast-time as that is often my only real treat of the day but I think with being active during the day there is more time for it to be digested unlike later in the day when we all tend to become more sendentary.
Hello once again.
I did once read that a nerve runs down via the liver and it is this that feels the liver pain. Apparently if you have a biopsy on the liver, this pain can be felt as a sharp stabbing in the right shoulder when the needle impacts in a lot having the procedure I read, due to this nerve that runs down that side. I have forgotten the name of the nerve now.
I've not had a biopsy so I can't say.
Sorry I had forgotten about your mention once of bathing. Maybe it is of no use to you re my mention of bathing but you never know someone else might just find it helpful. Back to the drawing board there in thinking how we can come up with other ideas to get relief from this damn itch (presently as I type I am not so bad but was a sunny evening so my husband and I went for a walk and were out for an hour so I expect that is another reason that with me not sitting down for very long following the evening meal that is why at the moment I don't feel so bad.
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Hi Peridot and Dolly another thing that I have found helps with the itch is to keep my skin well moisturised again tried many products over the years best one I have found is E 45 lotion I put it on after I shower/bath. Helps during the day that and the Quest ran med I take for the itch, best of luck.
Hello 2014-maydayyeah.
Glad that you have found some sort of semblance to try to resolve the itch but have to say this is where it really does vary between us all.....
....I find that if I use a moisturiser on my legs for eg (as that is where I can find I itch the most and can see old scars, new tiny scabs where I have scratched and damaged the hair pore) seems to make me feel worse. I think possibly due to the fact that I then block the skin pores? I don't buy anything like the E45 as that is branded, I do buy one that just goes as 'Emollient Cream' which is the same ingredients-wise and you can buy a tub size similar to E45 in the pound store. I have used it of an occasion as you can use it for washing.
I have found E45 childrens' bath milk for me the better. The bottle you shake up before pouring in bath. But at the moment I am back on to alternate days of using Epsom Salts as I have found the one I have bought again with the addition of 2 herbs with the magnesium sulphate (that is what Epsoms is) as it 'may help' with certain skin conditions. I haven't been getting the dryness that plain Epsoms seems to give me.
At present I refuse to resort to taking any additional meds for the itch. Just have the urso.
I think if Questran worked for everyone as it is stated that majority it doesn't seem to do then I think I'd more than likely maybe try it but for now I just don't want that addition.
I think some nights when the itch isn't so bad I think differntly to when it is worse. I think this is more than likely a fair statement that we all can realte to.
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Oh yikes. Well I live in Canada and they don't do biopsies over here to diagnose PBC but rather do a specific blood test so can't comment on the nerve pain, but I too get a dull uncomfortable pain under my right rib cage that lasts for days sometimes. I use Aveeno 100% colloidal oatmeal bath solutions comes in a box with 8 packets. Works really well to take away itch. Also if you don't have Aveeno products over in England, at a nursing home where I worked they made their own version. It goes like this : cut off a chunk of an old pair of clean pantyhose and tie a knot in one end. Then add one cup of dry oatmeal any type will do and one cup of powdered milk into the nylon and tie up that end. Use it as a sponge to bathe with. Don't use soap . Just get out of the tub and pat dry.
Hello Curlymac.
I know in the US they do biopsies even if you have been diagnosed according to contributors on here regardless but seems Canada have a similar way of thinking to the UK.
If the blood test doesn't show any of the antibodies AMAs up for a diagnosis in the UK alongside symptons and abnormal LFTs then if a doctor is in any doubt of a diagnosis one would ahve to have a biopsy for definite diagnosis. I was diagnosed via the AMAs and the other 2 criteria.
Yes we do have Aveeno over here, someone mentioned it to me sometime last year on here. I bought what I thought over-priced tube at the chemist and for me it did nothing. The Aveeno I bought was a tube of moisturising cream, not sure about the sachets available in the UK.
Now the colloidal oatmeal sachets for the bath I have used previously and when I did have diagnosed PBC. They were for babies and I did use in the bath (used 2 sachets) and though they made my skin feel great they didn't in fact have any impact on the itch at all. I have also once used oats soaked in the bath and again lovely skin but no impact.
I did read about cider vinegar once and have even used that with some honey to no avail.
I think due to the itch coming from inside the body and not actually the skin surface all I think we can do really for attempting to relieve it is to try to have some distraction. During the day if I do have the odd prickle I don't tend to notice due to being active but it is at night when the body is winding down and relaxing that any pressure points start to be felt with the itch. I put that down to how the blood is circulating and those used bile salts are in plenty due to having refuelled with food during the day.
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Hi Peridot sadly I still suffer with the itch but just find the things have listed make it more tolerable at least during the day. Night Time is another matter entirely. As you rightly say and I would agree think it's the inactivity and the fact that 6 stomach is usually empty so nothing for the bile to work on. Most nights I have to resort to the Questran in order to get even some sleep as was working still right up to the end of January. I have been on the transplant list since last August due to the itch and because my Iver is starting to fail. My consultants told me that the Urso had done as much as it was going to do for me. Unfortunately I was not what is called a good responder to the Urso as despite taking it religiously for 10 yes my lft's always remained high and most of them bar the bilirubin and the albumin 3-5 times what the highest no of the "normal" range should be. I truly hope some day they find a cure for 6 itch as for me it has been the bain of my life living with PBC
Oh dear, sorry to read about your PBC maydayyeah.
But they say the itch is not a reflection on how we truly are or are not with PBC which I have to say though that can be a good thing (my pathway to diagnosis of this PBC end 2010 was due to starting with a persistent itch), I find it so bizarre that it seems be differ so greatly between everyone.
I will say too that the bane of my existence currently like it has for the last 5yrs now is this damn itch. I will go as much to say I now can no longer remember what my life was before I started to itch.
i find that having a bath makes the itch worse and only shower now. Lots of moisturiser and it's not too bad now. I've now started with muscle spasms in my arms! It seems that every day I have something else to make me feel good.
HelloCathieG.
I have to make do with a shower when I go away on holiday and for me I can't say it does make much of a difference at all. I somehow think that for me, a bath at morning sort of cleanses the skin of anything that might have eeked out of the skin pores and also opening them might just help a bit.
I know I can't stand having a bath at night for some reason, I start to feel worse sooner. Funny how it is for us all, share the same sensation regarding the itch and yet we all try to alleviate it in differing ways.
Recommend hydroxyzine for the itching. The lining of the liver is not exactly a sack but there is a lining which is the same for most body organs
Sometimes docs refer to it as a sack, but it's known as the liver capsule. Searches using 'capsule' are more productive.
Or try it's clinical name Glisson's capsule.