Just have a question for anyone experiencing symptoms of pbc
I was diagnosed in June of this year and have been reading up on symptoms. I did have nausea years ago, now it's fatigue and sometimes itching. I didn't think to much of this but after reading about some people experiencing pain in their upper right side ( as a symptom) of pbc. They referred it to feeling like a stitch. I have noticed this the past while, not every day. Sometimes days and weeks before it comes back.
It feels like I was exercising abd didn't breath right so now I have this stitch. Like I said I experienced this a few times I would wake up in the morning with it and just get it for no apparent reason
My question is could this be the pain in that area related to pbc because I'm not sure how it's supposed to feel??
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Jen11804
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I noticed I get this the odd time and for me it's usually when I eat rich food or (quite likely!!) too much chocolate. My GP tells me it's the biliary tree contracting as it tries to process too much fat. Next time you have it think back on what you've eaten and you probably will find there is something there higher in fat that doesn't agree with you.
I'm not a big chocolate eater I do like my occasional sweets but overall I eat pretty healthy. I'm not sure why I get this but I'll try to remember what I ate the day before to c if it affects me
All the replies are good Jen. The thing is we all seem to have different symptoms and combinations of things. I am just over two years diagnosed now. Have to say life is good, feel fine at the moment. Hope all goes well for you. Keep smiling x
Good to read that like me you are doing fine and experiencing life well. I'm almost on my 4yrs of diagnosis early Dec. I can't believe that I have got this far to be honest. I would really say it is 5 early 2015 as that is when I started with the itch. Easy to think at the start I wasn't sure if I'd still be around by that time but I am and things seem to be far better than they were back in 2010.
I have this quiet often, it comes and goes sometimes i have it continues for about 3 days,i do feel tired a lot. Im going out today i havent been out for 3 days,i was diagnosed12 years ago and can handle it a bit better now.
The pain you seem to be experiecing can be due to PBC, pain felt in the liver area. There's a nerve running down via the neck called the phrenic nerve and it can be this that is causing pain to be felt. Apparently it can be felt temporarily when one has a biopsy from the liver due to this nerve. Figures I suppose if the liver is inflamed at the time due to PBC.
Personally I haven't overly-bothered with reading much on symptons in PBC myself since the very early days. I haven't looked into further developing stages as I decided long since (I was diagnosed Dec 2010, started itching earlier on that year. I am now 50), I would crack on with life and deal with things as and when they occur. I can't see the point in myself wasting time over this as serious as it can become due to the fact at the moment I just have the itch that can be bothersome at times causing broken sleep at night but other than that and the abnormal LFTs that aren't overly-bad at present, I'd rather not think about certain things as they might never come about.
I did experience right shoulder pain myself back in mid-2009 when I was working 5 days a wk in a domestic job. I did think at the time I had perhaps got a mild injury but over the last 5yrs I have from time to time had this very same pain though it isn't significant to stop me doing anything. I can notice it later in a day if I've done some lifting so I don't know for certain if it is due to PBC or whether it was an injury but I've been the same for the past 5yrs - I did see a GP at the time - so to me it is just something I don't actually think about.
You're new to PBC diagnose and I have to say that at the start of being informed you have this and are to take urso for life then it can be quite daunting. But as more time passes by and you reach the first year following and you are still cracking on with your life you do tend to start feeling that bit more at ease but I think with PBC we will always have that wariness about us.
I wasn't too concerned about it but wondered if whst I was feeling had to do with the pbc. I just wanted to know if others had experienced this or if it really was a stitch that I was getting
I wasn't meant to criticise if I did in any way, that has never been my aim on any posts on this site. I do try to look at a positive side.
It can be good to share concerns and certain symptons pertaining to PBC as at the end of the day someone with it will now exactly how another is feeling.
My bug-bear is the itch (though I had a pretty good night last, slept well for a change) and without this site I know I'd not have gathered certain things to try even if at the moment the itch still baffles me. I hope the itching you experience isn't too bad and if so it remains that way.
I didn't take it as criticism I just wondered if that was what I was experiencing and if anyone had any symptoms like mine
There are lots of people on here wondering if and what symptoms they have I think it's more curiosity and knowing others can help you is what is helpful.
Good to hear on your itch. Hopefully all stsys well
I think PBC is Pretty Bizarre myself. Even when the bloods are due and I've previously thought that I don't think I've been as good, certain down days and then they come back pretty good and vice-versa! Bizarre yes! I think that could be the first 2 words of PBC!
Yes, this definitely can be from PBC. This was actually one of the first symptoms I can trace back well before I was diagnosed. I always thought it was my gall bladder, which did clear up some when it was removed, but it came back. I will also get a dull ache over there and pain all around my lower back if I have eaten too much sugar, fat, or am just overly tired. I also get it if I eat too much of anything. Its almost as if there isn't enough room in there for my liver. I think my liver gets inflamed and overworked and it swells.
Mine is sore and tender this morning for some reason but I'm not sure exactly why. Sometimes it just gets that way for no reason I can trace. Its the only symptom I have other than fatigue.
I've had psin between my ribcage for years. Sometimes so bad it would radiate to my back. I sometimes get it but nothing major. I've had ( over the past several years) uktrasound done but they saw nothing. Told me I had indigestion. Anyways I c the specialist again in October. I will mention it to him
definitely, its this pain that sent me to the doctors for 15 years which eventually ended up with me being diagnosed, they told me that theres no pain related to PBC, this is totally wrong and I told them so, as soon as I was put on Urso, the pain went. Have you been put on Urso? ive also got extreme fatigue and joint ache, haven't got the itch thank god. The pain I had went from a stitch like pain and progressed into excruciating griping pain, always under my right ribs. xxxxx
Yes I am on urso. 2000 mg per day since I was diagnosed. Funny thing is I only noticed it the past few months. It's not often I get this but when I do it stays for a while I've had itching for months and almost 6 years ago had nausea
Long story short went to dr my enzynes were elevated then nothing was done. I also had itching over a yr now they thought I used detergent or was allergic to something but I had no rash. Frustrating but I saw a hormonal dr who told me ( after seeing my bloodwork) that I had to see a specialist. So he diagnosed me with pbc
Hi Jen11804, I've experienced this pain in my right side too, more so before I started the Urso. Prior to being diagnosed in Jan 2014 I wasn't as careful with my diet. Now on the seldom occasions I've experienced this pain I've tracked it back to something I've eaten which generally has a higher fat content. For me, a cheesy lasagne is a no no anymore......l Iearned the hard way. It doesn't matter how much healthy salad you try to camouflage it with! All the best
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