Pain

[gwillistexas]

So, does anyone wonder why some days you have that little achy liver, and other days not? Just curious

[SheepJane]

I have always wanted to know why that happens too.

[gwillistexas in reply to SheepJane]

I may ask dr this morning when I have fibroscan

[bobbycat]

It could be due to what you eat or how you feel generally on a certain day, stress makes mine worse.

[gwillistexas in reply to bobbycat]

Yea, I considered that. 👍

[Shulsey]

According to my heptologist it is from the liver becoming inflamed. Could be what you eat or strenuous activities as well. In my case I have a enlarged liver & my spleen is the same size as my liver. When your liver becomes aggravated the pain is from the surrounding area of the liver. The actual liver itself had no nerve endings, so no feeling. I have at times felt a popping sensation that usually fades away. On rare occasions I've had extreme upper right quadrant pain that has sent me to the ER. Just another fun part of our PBC journey🙄🤔.

Stay strong❣️

Shannon

[gwillistexas in reply to Shulsey]

Makes sense. While I was on Urso, within few days the pain was gone & didn't come back till I was off it for about a week. Now with Oclavia, yesterday was first day I was pain free. So we'll see what happens😊

[Shulsey]

Stress too, is a culprit. I've been so stressed recently that the pressure on my liver has caused hypertension which led to two more varicie banding. I return to my GI in the morning of the 21st for my follow-up EGD. Stress is the devil to our livers 👿

[gwillistexas in reply to Shulsey]

Amen to the stress factor. I'm under too much stresss also. Some is self inflicted. As you know, women want to fix everything for everyone. Can't do it. I'm leaving in about 30 minutes for fibroscan so I need to finish getting dressed. I'll post results this evening. 😎have a nice day!

[Shulsey in reply to gwillistexas]

Praying things go well❤️

[gwillistexas in reply to Shulsey]

Tks!

[IAmTheGlue in reply to gwillistexas]

Good luck! ❤

[gwillistexas in reply to IAmTheGlue]

Tks!

[Adele83]

HI Gwillistexas,

I keep on asking myself this question and I have been studying the problem. It seems to me that the gallbladder hurts more often than the liver and it is located just underneath it. They can be easily confused. Gallbladder usually aches when you eat fatty foods or junk or when you have stones or sand. It heals with some hot water and lemon or fresh grapefruit juice. Be generous with these amounts. As often and as much as you can if you are not diabetic or allergic to it and your stomach can tolerate it. You can stretch for days, months or even make a habit.

The liver pain is much more serious though as it occurs more rarely and it has a lot to do with stress, fatigue, a disorganised way of life, fatty liver or cirrhosis. So a longer and a heavier burden on the liver. When I have that it is very disappointing for me and I actually wonder how long have I got left. Then the depression, hence the need to sleep. So I disconnect and sleep for days. I am lucky I have my mum. I don't know if she understands or not but she is indeed a helping hand.

It can also hurt when the inflammation is back. When inflammation disappears it leaves behind a scarred tissue.

I believe the problem with this illness is that it is a very expensive one as it takes each and every resource and it gives back about a quarter of the output that a healthy person usually gives back.

In other words, us, the Liver patients, we struggle to give what others can give working only for fun. The other problem is not being able to constantly deliver. Unfortunately, it happened to me to be late for work because I could not wake up or I was overly tired at work. Hence why managers easily tagged me as disorganised and unreliable. When tired the tone of my voice becomes irritating for them, my emotional state of mind, my lack of enthusiasm and my speed, my incapacity to memorize tasks easily gave them reasons to put me on performance plans or to find excuses to sack me.

And this is my life in my early 30's when I should be out there delivering and enjoying. And these are not even half of all the frustrations that I have. I hope it works better for you.

So yes, usually liver hurts when you upset it, especially if he's constantly been hurt before. Be kind to it and help it to help yourself as this illness is not some piece of cake. God bless!

Yours,

Adela

[gwillistexas in reply to Adele83]

Oh, I agree with every word you said. I don't have my gallbladder. I'm just really upset about this whole thing. Have never been sick other than regular stuff. I feel I'm depressed because no one understands the feelings we have. I have no insurance so I have to find another job. But I don't always have energy to look. I don't know what the answer is but I need to find it sooner than later. Stay in touch & thank you😊

[Shulsey in reply to Adele83]

Very well put Adela, I couldn't have said it better myself. This disease was brought to my attention while I was in my thirties. I feel that I've had it much longer though, looking back at symptoms that relate. I did have my gallbladder removed at 19 yrs old & that pain is very intense as well. I feel as if Im a completely different person at 43. I miss my active, spontaneous self so often. I recently started therapy due to the depression. It is unfair how we must choose our battles daily. Where a healthy person just simply lives their life without consequence. But we must do what we can to live day to day. Prayers for us all🙏

Stay strong❣️

Shannon

[gwillistexas in reply to Shulsey]

Amen💜

[Adele83 in reply to Shulsey]

Thank you for the credit Shannon! You already knew all these, I just put it into words, my lovely!

Adela

[Adele83]

Keep the faith, we are indeed lovely and we speak the same language. This community helped me when I was very low, I will always come back to it and give back what I can. I understand you being upset. I am too. We're lucky to have each other.

[gwillistexas in reply to Adele83]

Thank you so much🌹

[gwillistexas]

If I may ask, what stage is your PBC ?

[Shulsey in reply to gwillistexas]

Not sure if you're asking Adele or myself, but I will answer just the same😊. At diagnosis I was at stage 2, that was in Aug 2012. Now Im at stage 4. Yes, I hit a few bumps in the road that caused the fast progression. But Im closer to being stabilized now more than ever. I have a superb healthcare team at Indiana university along with my healthcare team here in southern Indiana. ❤️

[gwillistexas in reply to Shulsey]

Yes I was replying to Adele but it's all good😊

[gwillistexas in reply to Shulsey]

You think Oclavia helped stabilize?

[Shulsey in reply to gwillistexas]

Definitely, it's the best my numbers have been since diagnosis. My heptologist started me with the 5mg for the first month, checking my hepatic panel every two weeks. Then had me alternating the 5mg with the 10mg for a month with bloodwork again for every two weeks. Im now just taking the 10mg & am due to do bloodwork again. I go back to IU Medical on the 25th. Plus I have contact with my health team through MyIUHealth whenever I have any concerns.

[gwillistexas in reply to Shulsey]

G'morning! I thought so. That is good to know. Makes me feel better. About to have my first cup☕️. I'll get back layer😊

[Adele83]

I have autoimmune liver cirrhosis discovered when I was 10. My mum is my everything and my kids are my heart. I am on Urso as well as other tabs and meds. I am researching Oclavia as you indicated and I see my doc at Royal Free. Keep in touch! God bless!

[kandiepat]

I get that pain/ache when I eat certain things like Tumeric. I can usually trace back at something Ive eaten/taken. Milk Thistle doesn't affect me but liver tonics full of good stuff ,do. I like to imagine that my blocked up bile ducts refuse to let anything good through! Kandypat

[gwillistexas in reply to kandiepat]

I've read turmeric is good. That's funny! I guess liver has its own quirks about what it likes & doesnt like😊 tks!

[Adele83 in reply to gwillistexas]

Heard about that too I don't understand how though...I doubt that in a lamb curry though...or who knows? My liver cirrhosis is quite severe but doctors say no need for a transplant. Not now maybe not ever. I do have fibrosis and I did 2 liver biopsies that confirmed the cirrhosis and fibrotic liver. I never drank a pint or a glass of wine. I think I tried some prosecco and had a class of wine tasting at the Uni but nothing else. I had dehydration today so spent the day in A&E...I don't recognize myself sometimes. How are you coping? What is fibroscan? Everyone talks about it, I was recommended one today. Shannon, you know that if we think outside the box for a moment we can discover great things?

Stay beautiful girls and boys, we are and we will forever be beautiful!

[Adele83 in reply to kandiepat]

I am on Milk Thistle too, but doctors don't like recommending it as it is a herb and it can damage as well as repair, they say. I really don't know if it makes any difference but I chose to stay on it. Do you feel better with it?

[gwillistexas in reply to Adele83]

I don't take milk thistle.

[Shulsey in reply to Adele83]

I took milk Thistle for the first couple of years. I stopped taking it because I cannot afford it most of the time. I've seen no difference from when I took it to when I stopped taking it.

[gwillistexas in reply to Shulsey]

Shulsey, I don't take herbs. I take vitamins & that's it.

[Shulsey in reply to gwillistexas]

That's all I take now, plus what has been prescribed for all of my issues🙂

[gwillistexas in reply to Shulsey]

👍😊