Liver pain

[JennyCville]

Hi friends. I know I've seen a few prior posts on this...but as a new person to PBC, I am wondering if anyone can explain why I keep having what appears to be liver pain? It isn't daily, but pretty frequent. ( I was diagnosed in January with positive AMA, and liver biopsy.) I did just have my gallbladder removed on January 4th, and had lots of complications after surgery, but a few days each week, I just have this ache over what I know is my liver. I know my spleen is a bit enlarged..but don't know if this can cause pain?

[Rockie]

Hi JennyCville . I often get a pain in my right side, but luckily after few days it disappears. Have had it for years.

[Twill]

Hi Jenny

I am also new to PBC and get pain in my liver area. No one really seems to know why so I just think it's a symptom of the disease.

I get a lot of muscle pain and my energy levels fluctuate.

I have put myself on a healthy eating regime and have cut down on high fat products.

I don't eat red meat anymore and have cut out a lot of dairy and gluten in my diet.

My blood test results have improved and I think it must be due to the change and eating lots for fresh veg and fruit and no alcohol.

I wish I could increase my exercise and hope when the weather improves I will get out and about more.

It has taken me 8 weeks to accept that I have this disease and I know it will take me forever to manage it.

Look after yourself

Tricia (Twill) x

[JennyCville in reply to Twill]

Twill and Rockie - thank you so much for weighing in! It's just quite unnerving!

Twill, like you, I've been recently diagnosed...8 weeks. When did they re-test your bloodwork? I have yet to be re-checked. I had already cut out gluten and red meat, now I need to work on the dairy.

Take care, everyone.

[Twill in reply to JennyCville]

Hi Jenny

I went to talk to my own GP 6 weeks after. She hadn't recieved notification from the consultant that I had actually been diagnosed with PBC. She had my blood tests re-done for her own records and advised me I should probably have Hep A, Hep B and pneumonia injections. She also tested to see if I was vitamin D deficient (which I am).

As mentioned before there was an improvement after a few weeks from the first tests.

I was disappointed with the lack of information.

I was given Ursodeoxycholic and basic info about bile ducts and that was it. I went home upset and have not stopped researching since.

I have found this forum amazing and the people so supportive.

There is a lot on the internet that is frightening and I have had tearful times, mainly because of the way my life has had to change (forever) but at least I am alive and I hope I will die with the disease not from it.

I am in the UK and would love to meet someone local to me with PBC.

On the forum we all understand and encourage one another.

Take care

Tricia (Twill) X

[Louedwards in reply to Twill]

This is exactly what happened to me on Dec 1st. Said they'd see me in 3 months and I haven't even received a appointment yet. Even my own docs no little about it. They eventually received information from the hospital. Not after is had to fight to get more urso because I was only given a months worth.

I agree there is a lot of horror stories I never read then just use here and the PBC foundation for information.

LOUISE

[Belliver]

Hi JennyCville, I would (& still do) get 'liver' pain on my right side , just occasionally now , but quite frequently after liver biopsy. Dr said liver doesn't have nerve endings but there is a sheath of some sort of connective tissue around liver--- and it does have nerves there that let you know it is not happy. From what you wrote , sounds like that area has been 'insulted' by recent surgical/medical interventions. I find travel sometimes bothers the area (vibrations?), so I brace the area with a pillow & it helps, lying quietly on whichever side is most comfortable, sometimes helps too. Be sure to mention it to your dr, just to make sure recent procedures haven't created a treatable problem. Btw, it's been 10 years for me, I don't pay much attention to it anymore. Best wishes!

[kandiepat]

Hi all, yes I'm the same as you all, diagnosed a year now - only difference is I'm 73 and I wish I didn't know! I had put everything down to old age and was ok with it all. Now I'm consumed by PBC and sjogrens? I do believe that I'm gluten sensitive and that may have been the start of it all many years ago, I've read that people with auto immune illnesses are gluten sensitive even if they don't show up as gluten intolerant. So, I try and stay off gluten, also sugar and I. Juice because supplements tend to Bind me up. I've lolled around for a year feeling woe is me and I'm fed up with it- so I've got a dog and I'm going to get out and try and walk it off. So, try and chill out a bit because worry won't make it better, it will just send your blood pressure up- like me. All the best kandiepat

[JennyCville]

You all are great...and the explanation for the liver pain makes sense. The only time i've brought it up the doctor said that it was impossible for it to be the liver. (Then, um, why is it hurting after you all poked it a bunch?)

Be well, everyone. Thank you for the encouragement.