Upper right pain and upper middle back pain

[nessarose714]

So i felt as if i just had a gallbladder attack but i have no gallbladder. 2 days ago i was diagnosed with pbc. Is this a common pain for everyone? It was really bad. I came home and sat on the toilet because it felt like that relieved it some what. I haven't had much to eat today i noticed when i don't really eat i get this. My appetite isnt much because lately i felt bloated. Answers please? Anyone out there that had this?

[June9961]

Hi Nessa,

I too had my gall bladder out and still suffer the pain as though I still have a gall bladder. Thankfully the day of suffering this pain is getting less and less. I have had PBC for 17 years now. As for the bloating it is part and parcel of PBC I'm afraid. Depending on what I eat, somedays I can look as though I am 9 months pregnant, which can be embarrassing. It is a case of finding out what bloats you and what does not. 😀

[nessarose714 in reply to June9961]

Really I'm not sure but i think dairy. And wheat. This pain i notice Im getting Like when i go long periods without eating. I wonder why. And you've had it for17years..woe.. How does the meds effect you? Do u have side effects? Also what things do you eat? My friend told me to start juicing and eat just alot of veggies and no animal meat which is hard cause i like chicken. What foods should i avoid. I also heard salt and sugar...advice? The fatigue of pbc kind of scares me i feel like scared to sleep cause i feel so fatigue I'm like oh my goodness will i wake up. Is your fatigue really bad? What things do you do to energize? Because i can't workout its too much for me.

[June9961 in reply to nessarose714]

I seem to be okay with the meds. I take 7 urso a day and calcichew forte d3. Although it can be difficult to say my symptoms are PBC or medication related. I used to suffer continuously from terrble bone and muscular pain and crippling pains on my side which has almost diminished. Just get that now and again which is more manageable. I still suffer from extreme fatigue, dry eyes and the brain fog is getting worse ( could be age related). Regarding the bloating, funnily enough if I eat a lot of vegetables or pulses I bloat up badly. Most if the times I eat what I like which mostly include chicken as I don't like red meat. Eating a good balanced diet is important. I even have the odd glass of wine watered down because alcohol goes to my head quickly. At no time have I ever been told by my consultant to stop drinking, its just it affects me too much these days. Hope this helps.🤔

[nessarose714 in reply to June9961]

May i ask how old are you? Im 34. Yes the fatigue is very bothersome. To the point it's hard to do daily activities. What stage are you? And when you day brain fogg? Pbc does that? Because lately im very forgetful and have to remember even what i was gonna say. Yes i also have bone pain. My legs feet and shoulders ache alot. And the side pain that alone right there scares me because it really hurts. What's the cause of the pain? Does the meds have bad affects? I'm really sensitive

[June9961 in reply to nessarose714]

I am 61 years old. I don't know my stage and tbh I feel for me that I would rather not know. They are not totally sure what the cause of the pain is but it coukd be the toxins that get into your blood. This goes for the brain fog too. My advice to you is listen to your body but don't dwell too juch on the pbc and try to enjoy your lufe as much as your body will allow.😀

[Junolee in reply to June9961]

Totally agree.

[nessarose714 in reply to June9961]

What toxins?

[June9961 in reply to nessarose714]

Your liver cleanses the blood with the aid of bile. If it cant work properly then some toxins which are in everyones blood is not filtered out properly and causes a build up. Nothing to worry about because that is what your urso is for. X

[nessarose714 in reply to June9961]

Im not on urso. I am waiting to see my g.i specialist to see what he wants to do next. I have another question. My alt and ast levels are normal is that a good thing? I honestly can't sleep. I wake up in the middle I'd my sleep jumping up thinking I'm going to die because i don't know what stage I'm at. This has been very difficult for me as i already have generalized anxiety. Im scared to go to sleep

[June9961 in reply to nessarose714]

Speak to your g.i. Specialist and write down the questions you have before you go to see him/her. Normal ast alp is great news though. Your specialist will discuss with you the need for urso. Have you contacted the pbc foundation. They have excellent advice and have a booklet containing all of the information you need. We all felt a little anxious when we were first diagnosed so try not to worry too much and don't get hung up on stages please. 😀

[Junolee in reply to nessarose714]

You poor thing. It doesn't matter what any of us say right now, you will still go through this. It takes a while, like grieving and just like that everyone is different and takes different time. However, believe me, especially when you are put in medication and it starts working, you will feel better and you will get through this. Honestly, I was exactly like you, but you realise quickly that this is your life and you have to live it as well as possible. It's a great excuse for treating yourself really well, indulge in comfort as much as possible. Why not????? 😍

[Junolee in reply to nessarose714]

Don't worry about avoiding things in particular, eat a good balance diet. Don't rule anything out unless you don't like it or you notice it affects you. I find I have to eat regularly, in fact I am never full, it's like I've a hole in my stomach 😀. I was on steroids for 18 months when I was first diagnosed and I initially thought it was that, but no, apparently we just need lots of energy to keep our liver functioning normally, on the plus side I find I can eat a lot without gaining much weight, but I do walk a lot so hard to tell. I go through phases of really bad eating, once I start on chocolate/sugar I go though days of it, but generally I try to eat clean and I do feel better for it. For you wait and see how your meds work out, you'll get a balance. Trial and error. I feel great xx

[Michi1 in reply to nessarose714]

Drink lots of filtered water. Eat every color in the rainbow and especially lots of cruciferous vegetables. Meat is ok, fish, chicken. I’ve eliminated the ones with hormones and am sticking to free range organic. Eggs. Cut sugar drastically. I don’t have processed sugar in my home. I have raw honey and natural maple syrup and use them very sparingly. Drink black coffee. There’s some evidence coffee helps. Also nuts, healthy fats, and seeds. I did an elimination diet and learned I’m very sensitive to gluten and dairy. The gluten I’ve cut out entirely. Dairy mostly. You can still eat cheese that doesn’t contain casein, a gluten-like protein, if you eat sheep and goat cheeses. Finally, kombucha and fermented foods for the probiotics.

[Shine1]

Hello.

The upper right quadrant pain seems tovary between people, some say they dont get it, others do. I do, so understand, its very uncomfortable. Its not there 24/7, but its frequent. It feels like a deep dull ache there, I have only had it since liver biopsy and PBC diagnosis, had not felt it there before that. I find it uncomfortable to lie on my right hand side. I still have my gall bladder, but was told the discomfort is unlikely to be related to the gall bladder.

I dont find the ache always relates to food, sometimes it can be if I over exert myself eg with exercise. Food-wise I'm still trying to work out causes and trying to eat a little less fat. I'm vegetarian and have needed to avoid wheat for many years. Hope this helps and it settles a little for you x

[Shine1 in reply to Shine1]

Completely agree with always feeling hungry and wanting to snack, glad to hear you're the same with that!

[Yvonnejulie]

Hello, I still get these pains after having my gallbladder removed, eating nothing does seem to set it off and over doing things and being tired also sets it off, when I get the pain bad I nibble on a slice of bread and sip some milk and that seems to help, luckily mine is becoming less and less now so not sure if it's just me getting it under control, I also have an actimal everyday and if I get the feeling it is going to start I take that, hopefully the pain will dye down and become more manageable for you

[Hidden]

It may well be related to not having eaten, it is advised to eat smaller meals more often, there is no one diet for PBC itself, however It is advisable to follow a healthy eating plan to maintain your health and energy by giving your body nutritious foods and your body does need protien in some form. I eat pleny of chicken and fish but not a lot of red meat.

I have IBS and this causes all sorts of stomach symptoms and pains when iam in a flare up, being newly diagnosed I would go back to your doctor it may not be related to the PBC and other issues should be ruled out before changing your diet to much.

[moepag]

Hi Nessarose - I too get the right upper quadrant pain and for me it seems much worse when I am stressed. Don't be afraid to sleep! The extreme fatigue is much better if you rest when needed and try to get a good, solid nights sleep. It really helps to get exercise as well. Force yourself to go for a nice walk and build up over time. I find that as much as I don't like or don't want to do it, I always feel better when I do!

I would also ask for a copy of your blood work when you see your doctor. It has been very helpful for me to compare results each time. I am in the US and can also see my results online which is great. Fortunately, after 2 years on Urso my numbers are all very low so hopefully yours will be too. My doc told me I now have a normal life expectancy as long as I continue on Urso and continue to maintain a healthy lifestyle.

Definitely try to email/call the folks at PBC foundation - they are very helpful. It takes some time to come to terms with having PBC but you will get there!

Best of luck!

[GrittyReads]

Hi Nessarose,

To be 'formally' diagnosed as having PBC you need to have at least 2 out of three diagnostic criteria:

1) the presence of AMAs (antimitochondrial antibodies); and/or:

2) abnormal levels of the chemicals associated with PBC, which are checked via blood tests or 'Liver function tests' (lfts). The chemicals my consultant goes by most are GGT and ALP, although AST and ALT, and others, are checked; and/or:

3) A liver biopsy that shows abnormalities in the liver that are typical of PBC.

I would get a copy of your blood test results (in the UK it is you 'right' although there may be a small charge, especially for older tests - ask about this). Then you can see which lfts are causing the diagnosis of PBC. If your lfts are good, but you have AMAs, it could be that your Consultant is basing the diagnosis on AMAs , plus your symptoms, as they are typical for PBC. However such symptoms are also common for other liver conditions, and even some autoimmune conditions. It may be that more tests are being ordered to rule out other issues: it may even be that you will be offered a biopsy.

Usually PBC should not (cannot 'formally') be diagnosed by the presence of only 'AMAs', but you need to check what the blood test results were. Once you have the tests you could contact the advisors at the PBC Foundation - they 'host' this site on 'Health Unlocked' and a link to their website is at the top of this page - on the site you will find phone and email links to talk to their trained advisors.

If you definitely have PBC then - at present - Urso is the only treatment, and most people are put on it as soon as possible. An ultrasound scan can rule out some other conditions, and can also show scarring on the liver (an indicator of PBC, but also of other liver conditions) so although you may be offered a scan, it cannot 'diagnose' PBC: only a biopsy plus the presence of 1) and/or 2) can do that.

Diet-wise, I would steer clear of alcohol, but (low fat) meat and fish are fine. If you already know that wheat and dairy causes the bloating, try reducing them and chart what happens - but also ask for a proper coeliac test, as Coeliac disease causes some of the symptoms you mention (NB you will have to eat a reasonable amount of wheat for about 4 weeks before the test, as it won't test properly if you are already avoiding wheat). Otherwise a good, healthy wide ranging diet, with plenty of varied fruit, veg and salad, but don't overdo it. A lot of people find that smaller, but more frequent, meals help. Exercise is also good - nothing mad, just regular daily exercise. Above all have fun and treat yourself: try not to worry as that is the worst for autoimmune conditions.

Take care.

[nessarose714 in reply to GrittyReads]

How is a liver biopsy done? I don't want to be put to sleep i don't do well with anesthesia

[GrittyReads in reply to nessarose714]

I've never had a biopsy, so I cannot comment personally, and they may not even suggest one to you.

(NB I don't have PBC yet, just AMAs, but I have had consistently 'perfect' liver function tests for 24 years, and may never get it, but I have to be tested, annually, as it is fairly serious if PBC develops, and I would want to know and go on Urso asap, as there is no cure for PBC, although since the development of Urso, most people have long fruitful, full lives and die in old age of something else.)

Other people on here have given accounts of having biopsies, and generally a general anaesthetic is not given. It seems there is a small pain as a needle goes in, but most people are okay with it, although I gather the hard part is keeping still for a few hours after. But then most people want to know for certain if they have got PBC ... or anything else wrong with their liver, as it is such an important organ and we cannot live without it.

To put your mind at rest, I really suggest getting all your blood test results and then talking to the trained advisors at the 'PBC Foundation' - they are helpful, reassuring and incredibly knowledgeable about the condition.

[nessarose714 in reply to GrittyReads]

I've messaged them and got no response yet. I'm in the US does that matter?

[GrittyReads in reply to nessarose714]

They are a fairly small charity in the UK and I don't know if their advisors are on full-time, but I doubt it. However, I think others on here, in the past, from the US have had email replies. Try again in the week: I guess weekends and evenings there may be few people around - or they are overwhelmed!

Also, why not put a new post on here and ask for contacts who are in the US? There are several contributors on here who are from the States, and I'm sure they'd help. If you say roughly where you are they may be able to give you advice on who is good to see in your area.

Also, it's always better to write on weekdays, as I've noticed the level of replies definitely falls at weekends, especially Sundays.

Take care, and I hope you get some answers soon.

[MistyField in reply to nessarose714]

No they don't put you to sleep. They will knumb your side but you are awake for the procedure. I have had two and did not feel a thing either time. Once the knumbness wares off you will have discomfort in the right shoulder but they will give you something for that. It will only last a couple hours.

[Wilmahair]

Just wondering if you took any pain meds? I get this with many pain medications in particular codeine. I get biliary spasms which are excruciating and nothing helps till it just passes. Even have pethidine injections to relieve the pain to no avail. I have also learnt not too get too hungry and even eat either arrow root biscuits or dry biscuits before i go to sleep to prevent waking with the pain. I too feel very bloated by the end of the day. One thing that has helped me is buscapan forte. I take this as soon as the pain starts. I too have no gall blader. There is also a condition some one else may know of it but my memory is poor but is got the word Isle in it.

Also i was put on Creon pancreatic acid to help my pancreatic enzymes work better as I have regular loose bowels.

I also have the fatigue and after buying a fit bit I know why. I spend two to three hours a night tossing and turning because of my hip and shoulder pain as well as pain in my upper right abdomen. If I am tired I just sleep till I feel better now. Last night I slept 11 hours but that's the only night in a week I had enough sleep. Most nights it's only 4 to 6 hours.

Don't know if this is any help and i hope you get it sorted. The pain i get is very frightening and i do what ever i can to avoid getting it.

[Suziebeau]

Once you are started on Urso you may well find that the pain on your right side really decreases or disappears. Since taking Urso I only notice it very occasionally now, whereas before it was constant and really painful.

[Michi1]

I had these symptoms so badly I went to the ER. There were elevated labs but no stones in the ultrasound. I also had mid-spine pain and thought I had a running injury. The pain went away after I went to the chiropractor and I thought all was well. Two years later I went to the doctor for a UTI, he ran checkup blood tests, and my ALP was 430! That was almost three years ago. I’m on Urso and responding. The pain hasn’t come back.