Just been told today that pbc doesn't cause pain 😬

[Aussielouise]

I told gastroenterologist that yes it does!

Why do doctors keep saying it doesn't hurt? I feel wrecked, can't sleep and have pain but I'm only stage one according to biopsy.

[Hidden]

I think PBC can cause pain. A lot mention an ache near the ribs. I've not experienced so cannot comment there.

So far I've not experienced any pain thouigh the itch is a pain!!!

You stated you had a biopsy (I never have, was diagnosed 2010 without the need in the UK), your gastroenterologist should have one and then see how he/she feels afterwards. I believe you can get a sharp pain in your shoulder at the point of needle impact. Given the liver then has had a needle stuck into it I am certain you are going to have pain following even if temporarily. The pain is said to come from the phrenic nerve that runs down the right side of the body and this is why shoulder pain is felt at biopsy. Said the liver has no nerves but it is more than likely this nerve that is being irritated that is causing the pain. I once read about this some place several years ago so cannot now state exactly where I did but it was on a reputable site.

[jane1964]

Hello Louise,

I have multiple joint pain and aching muscles, it was the investigation of this that led to the doctors finding pbc.When they are bad I feel like I have the flu, ache all over.There is still no explanation of these pains after 7 years and 3 rheumatologists!But I believe they are somehow connected.I hope that your doctors are able to help you.

Jane

[Franky007 in reply to jane1964]

I agree sometimes I would wake up and feel like I was hit by a truck. This would last for a few days. I also have other aches and joint pain. This disease is not consistent and affects people differently. Some have pain, some have fatigue and itching. Some have no symptoms it's random and a strange disease.

[tonia66 in reply to Franky007]

Franky007, you don't know how many times I have woke up in the mornings and said " I feel like I've been hit by a Mack Truck!" Or I've said "how could I sleep all night and wake up tired?! At least now I know what is going on....and it's not me just "getting old!" Lol

[Jowen]

Hi, it's truly annoying to be told you're fine when 1) you have muscle pain and joint pain and 2) pain on the right hand side just beneath the ribs.

But I have come to realize that it doesn't matter what I say and very little or nothing can be done about it. I patiently repeat what is wrong with me and always get the same answer: "That is probably not because of PBC". And of course there may be other reasons so we have checked and checked again for other causes. But nothing else has been found. For me PBC is recurrent anemia, muscle and joint pain (sometimes tolerable sometimes severe), right hip pain and decreased flexibility in right hip and liver pain. I also feel nauseous at times. Overall food can be a problem.

My consultant thinks all of this is non-related. Obviously, I cannot say for sure, but all of this started with PBC... I don't suffer from debilitating itch but if I try to live like before PBC and do as much as I used to do and skip resting I get real sick and suffer from a crushing fatigue. I do feel that all the doctors I have met have a very shallow insight in how this condition may impact on a patient's life.

Don't give up trying to make them understand. I believe insisting will help. Just reading on this site you'll see that others also have mentioned liver pain. And remember symptoms will vary! I've had sleeping problems too, but that and itching come and go.

Good luck and hope you'll feel better soon!

J

[Franky007]

Hi, I have liver pain and pain on my side and right side of back and shoulder. My shoulder blade area is inflamed. I have Acupunture to try to help. I don't sleep well either☹️. I have been in chronic pain for a while now. As well as being fatigued. Ita saf thatca can a Dr tells you there is no pain. So they are telling you how you should feel. They should be supportive not dismissive. Try to be open with them and keep letting them know how you feel. Discomfort and Pain with PBC is real! Sometimes with Dr's you need to be forward and assertive.

[Buddy2017]

I was told that by the doctor who asked me first if I had stopped drinking !!!!!

My answer is to now ask to see the Consultant who has at least some knowledge of PBC.

[fran40barry41 in reply to Buddy2017]

I have never drank for 12 years and also stopped smoking for same time nothing to do with alchahol ignore that doctot

[tonia66 in reply to Buddy2017]

OMG! That is what my PCP said to me, several times in subtle ways trying to get me to slip up....I don't drink much, if at all...I've been working full time, going to college full time....who has time to drink?! I don't know about you but if I do I just can't get over it quickly....even just a couple beers keeps me in bed most of the following day....

I do like to cook with wine, bourbon and beer...does anyone know if this is damaging to the liver since the alcohol is cooked off?

[cazer]

give the gastro a symptoms leaflet its there in black and white. agh!!!! best wishes cazer x

[Debbiem40]

Apparently there are no nerves in your liver, so that doesn't give you pain. Pain in the ribs is from your gall bladder, possibly a gall stone. PBC is an autoimmune disease which means you are likely to have other autoimmune problems - hence the joint pain. I suffered from Uveitis last year, which is inflammation of the eye - another auto immune problem.

[Aussielouise in reply to Debbiem40]

The liver doesn't have pain receptors, but the capsule that surrounds it does. So when the liver is inflamed the can cause pain in the capsule. In fact pain in the upper Rt quadrant is a known symptom of pbc and psc, just not widely known. It's actually stated in all the up to date literature including from the pbc foundation.

Luckily pain isn't a feature for all patients, very much like the itch and fatigue.

[Hidden in reply to Aussielouise]

Here are the links to two sites describing PBC symptoms:

1) mayoclinic.org/diseases-con...

2) liverfoundation.org/aboutth...

[reenann]

I found out I had PBC in Oct 2016 but found out before this that I had severe vitamin D deficiency this was causing joint pain symptoms and since taking a supplement I've been much better. So I originally went with pain symptoms and then found out I had PBC.

Also as others have said you can get pain in your right side near your ribs. I don't have this yet but the hit by a truck feeling others have mentioned was definitely how i felt and that's gone now since taking a multivitamin with a high dose of vitamin D in it.

Hope that's helpful.