It seems to me that we are all/mostl of usare at the hands of doctors that rebuke our symtoms or know very little about PBC. Reading and researching shows me that there are very few factual list of sytoms that are written by actual suffers. I have tried to find something to give to my family to read and get a true picture, but most seem written to flower over thing so we the suffers dont feel too bad..Any way, here is my list,PLEASE add to it and when its complete I'll send it to the foundation to ask if they will perhaps print it for the dr's and families of suffers to get a true picture..
Chronic fatigue
Intense itch
Severe joint pains
Upper stomach pain
Nausea
Depression living with all the above
Bowel problems
Written by
Lisacj
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While i think this is a good idea Lisacj I dont think that anyone with any other illness could contribute.
For instance i dont know how much of my pain is down to fibromalgia and how much PBC. My swollen hands/arms/feet could be down to PBC or another auto immune disease. My poor memory/concentration could be down to PBC/Gluten related/Fibrofog.
So while i could make a huge list, with most of my ailments I really dont know what exactly causes what. A great idea though if you just suffer with PBC alone.
I have been diagnosed with PBC, Osteoarthritis in the hands and feet and Osteoporosis in the spine.
While I agree to a certain extent with zipitydoo that some of these symptoms could be to do with other illnesses i.e. my joint/bone pain and the Osteoarthritis/Osteoporosis,...But as for my other symptoms I can only put them down to having PBC as I have certainly not been told otherwise and no tests have been taken to check for any other conditions.
My symptoms are like yours Lisacj with some additions
Poor memory/concentration
Muscle and bone pain
Dry mouth
I have this problem, i have multiple autoimmune problems, and dont know what's causing what. I also have secondary Sjogrens, but to what nobody can tell me!
Your Sjogren's is secondary to the Scleroderma!! The Raynaud's we have with Sclero is secondary too. I wouldn't be surprised to be told that the PBC is also secondary. These other things are secondary to Sclero. If we didn't have Scleroderma we probably wouldn't have them. Raynaud's and Sjogren's can be primary and then it seems they are a bit different.
I am all for this and wanted to do something similar a while back but I got shouted down by a poster on this board and I hope you don't, so here goes.
I have PBC and osteoporosis.
I suffer from
Chronic fatigue.
Severe joint and muscle pain all the time.
Intense itching.
Hair loss.
Nausea,
Depression.
Some bowel problems at times.
The worst bit for me in the joint and muscle pain as it is so tiering dragging myself around.
I also get confused at times and forget what I have done or where I have just put things I also tend to talk rubbish as well, like words get jumbled up but I put this down to the tiredness.
The osteoporosis unit said osteo does not cause joint / muscle pain, I done have arthritis or rhumy..........so My gripe is what the heck is causing all this pain then, no one seems to care to find out.
lindaclarke and mumofthree, I think there enough positive posts to pursue, thanks for you input. As PBC is an autoimmune disease it seems logical that other diseases will come about too. I am seeing an immunologist in 2 weeks so will hopefully get soem answers on the whole lot?? I do understand where the others are coming form and will see if we can differentiate soem of these problems, Thanks all,x
Lisacj I forgot to add that my skin all over is very dry all over and also marks very easily with like blood spots coming to the surface if I scratch my arms, Whatever i rub into it i don't seem to be able to moisturise it and it's worse when i have a shower even one without soap etc.
lindaclark - have you had your thyroid checked? I have hypothyroidism, and now that i,m on the correct dose, this dryness/itching has got a lot better
Same here, I have hypothyroidism since 2003 and in 1998 diagnosed having a PBC. Now, experiencing chronic fatigue, itching at the back like a prickly heat, muscle pain and nausea. I can only eat wheat bread, I have a hard time now to eat rice, it seems I suffer indigestion.
Hi everyone, Hope you are all as well as you can be.
I myself put a list blog last year about what I personally suffer, it seems that in general all PBC sufferers have most of these symptoms, but back to the list,
Fatigue
Joint pain (to having a cup hands being so sore I am unable to hold a cup myself)
itching
Poor concentration
Bad memory
Reynauds
Stress
depression
red palms
mixed up words
bad night sweats
bruising with no reason
pain in my side (now take morphine for pain)
nausia
weight loss
and finally I now have to use,
Stair lift
bath hoist
travel by wheelchair( but the time you can spend shopping girls is amazing),haha
I have went from being a chef working 14/16 hrs a day six days a week to having to rely on someone to do almost everything for me.
how many times a day do we all ask "why me", but there is always some one worse than yourself isn't there?
Poor You! It's really a long list, but I'd like to congratulate having such a good attitude as: 'but there is always some one worse than yourself isn't there?', yes, we have great problems, but when we look around...
Great idea. I suffer from chronic fatiguge, joint and muscle pain particularly areas in which I have had damage in the past, right abdominal pain, get depressed and emotional very easily and suffer from hot flushes throughout the day and night.
I have 7 diagnosed autoimmune diseases. I as well as the doctors can't figure what is causing what. I have experienced all of the above symptoms...every day is a new surprise.
Don't forget cognitive deficiencies such as poor concentration & memory. I have no idea why even the PBC Organisation doesn't list this MASSIVE effect of PBC. It is recognised by the medics I've spoken to, and is separate to hepatic encephalopathy.
Forgot to say i have bad sweats at night, I wake up with a ringing wet head, wet sheets etc, and it isn't hot flushes as I am on HRT at the moment and the amount of it is too much for a flush anyway. And my ear holes itch right down inside ( just remembered this as it's been happening all afternoon.
Gosh we sould like a load of old crocks.
I also have a wheelchair derann and a scooter to nip to the shops on my own as I can't drive anymore. our social services will not put a stair lift or a shower cubical in for me as they said ( this isn't the house for you ) and said if I sleep in what is my dining room ( move down stairs ) they will consider it, they are oh so helpfull in North Wales.
Getting there team . I know some of these may be other disease but I know that some of those other diseases are from having PBC like Sjogren's and osteoporosis.
Lets keep going, thanks so much all of you for your time xx
As I was reading through all of these lists I realized that more of my problems than I knew can be chalked up to PBC - tho' not all, darn it. lol Some is just old age (I'm 71), some is just pure orneryness. hehe.
To confirm some of the others, however, this is my list - that I can remember. -
Memory
Fatigue
Waking in the middle of the night for several hours
Lower abdominal pain
Stomach pain
Bowel problems (thank you Lord for Depends) - (anyone ever duck-walk to
a public restroom?!! LOL)
Raynauds/hands
Mood swings (?) - - Does anyone ever "flash in the pan" anger that is totally out of character?
Lightheadedness - could be caused by the COPD
Balance problems at times
Loss of muscle/strength
Loss of appetite tho' not losing weight
That's all that I can remember for now
Ya'll have a blessed day/evening.
Tumbleweed
I get cramps in my calves and feet, just under my right bust and in my abdomen as well but just put it down to having wind or being cold, I didn't think about it being related.
I also get like white clouds in my right eye so I can't see through it, does anyone get that, I am going to the opticians soon BTW.
Wow, its amazing when you list them you realise how many you have. I have PBC for definite but still being checked to rule out anything else, fingers crossed.
Fatigue
Foot pain - like treading on needles around edge of feet area and pains in the joints of toes?
Poor concentration
Poor memory
Forgetting words to simple every day objects, or simple words in mid conversation
Itch ( not so bad as most)
Stress
Dry eyes
Dry mouth
Dry skin
Balance
Pain on upper right quadrant, not too bad
Weight gain
Night sweats, just started
Reynauds
red palms
Vitiligo
Rosacea - had great skin for years now i have spots constantly on forehead
Don't forget the knock-on effects of a badly functioning liver - like high cholesterol and osteopenia (the early stages of osteoporosis). Also other autoimmune conditions - like lichen planus (in the mouth, which has to be kept on eye on in case it turns cancerous). I have all these so you can add them to all the lists above!
Dear jannybean,please dont be too worried, we have all felt what you feel and totally understand. It is a very big blow, when first diagnosed. In time it starts to be a little clearer and then you relalise life does and will go on.xx Read a lot of the blogs on this site, some are a little scary when you hear how some of us are suffering with this and that, but many others are actually doing really well.If you need, ask your GP if they can push the appoinment forward?? may help?? Any way use this site to ask loads of questions , some one will always offer help.. Take carexx Doubled up posting this so to make sure you get it
Dear jannybean,please dont be too worried, we have all felt what you feel and totally understand. It is a very big blow, when first diagnosed. In time it starts to be a little clearer and then you relalise life does and will go on.xx Read a lot of the blogs on this site, some are a little scary when you hear how some of us are suffering with this and that, but many others are actually doing really well.If you need, ask your GP if they can push the appoinment forward?? may help?? Any way use this site to ask loads of questions , some one will always offer help.. Take carexx
Thank you Lisacj for your kind words and advice. I am at hospital tomorrow with my hands, I have carpal tunnel syndrome in my right and my left had carpal tunnel but now the other fingers are numb due to a trapped ulna nerve. I had surgery on my left for the carpal tunnel and thats ok now, I just need the ulna nerve problem sorted out.
I had a bone density scan last week and I'm waiting for results on that. I am going to make an appointment with my GP and ask if there's a way to get to see the specialist sooner. My previous consultant at hospital was Dr K Padmakumar and he has referred me to Dr K Moriarty, not sure why though. xxx
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. I know some of these may be other disease but I know that some of those other diseases are from having PBC like Sjogren's and osteoporosis. 
Can anyone tell me if bile is the same as stomach acid?
Skinny Liver - book by K. Kirkpatrick and I. Hanouneh
To all those who live in sunny climates all the time do you suffer with the itch caused by PBC?
Shaking and joint pain.
Advice for a \"young\" PBC sufferer?
