I have recently been diagnosed with PBC ( Jan 21 ) and have joined to hopefully get advice and support. I had to give up my full time work as a healthcare practitioner in the NHS due to my ill health. Does anyone else suffer with extreme fatigue and aches and pains? I have been told these are symptoms, but once I need to sit and rest there is no compromise! I also have pain in my right upper side the whole time. I am taking URSO - will this help? I find it really difficult for friends and family to understand how unwell I feel. It is assumed by some as me being lazy. When I have the energy I try and do yoga and meditate to help me. Anyone suffering and have ways of how they cope would be appreciated.
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Fredbare13
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Sorry about you having pbc. It is unfortunate that your family and friends write the condition off. Have you joined the pbc foundation? Maybe you can get pbc literature and let your family/friends read to educate themselves so that they can be more supportive.
I occasionally have a twitch of discomfort on my right side directly where the breast bone is. I mentioned it to my hepatologist but it is not definitive why it happens. I think it is the pbc. Not sure if the urso helps. Maybe have your doctor do a sonogram and a fibroscan to see if anything amiss.
Fatigue, aches and pains are not correlated with pbc progression. Not much is know about that in general from my understanding. Believe if you do some light exercise daily; will help with this.
The bright side is that they were able to diagnose and you are on meds. Just listen to your body and rest as needed.
Never mind what other people think. That is not important. Be kind to yourself and do fun things to distract yourself.
I don't know that the urso will help other than getting your labs to somewhat normal. I have the fatigue but I have not had the pain or aches. I was diagnosed with it in 2012. I understand the lazy thing. Because we don't LOOK sick, we must be fine. It's hard for them to understand that just because we don't look sick we truly are. Hope you find something that works for you.
Hello, sorry for your diagnosis of pbc. I have experienced your same symptoms. For years I felt tired and that I was lazy. I also had an itchy right arm ,with no visible reason, for a decade. My diagnosis came about after I saw a rheumatologist for constant aches and pains. I thought perhaps I had fibromyalgia. They told me it wasnot that, and I burst into tears ( not common behavior for me). Those doctors had a thought and told my primary to test blood for a liver issue. A couple of doctors later I was on Urso, 1200 a day, and told I had probably had pbc for 20 years. 4 years later my numbers are good. However my right side occasionally hurts , for my aches I take krill oil, tumeric, and recently CBD oil. All these have helped. You don't mention your age, I am older with a bit of arthritis so there is that factor. I rarely take NSAIDs so sometimes there is more aches than I care to have, but overall things are better. Unfortunately people don't understand the fatigue part. Excercise, fresh air and a nap. Once it hits you, time to sit back. I recently retired and get mad at myself for sleeping late. Trying to accept that if I am sleeping, then my body needs it! Now that you have been diagnosed you no longer need to be upset with yourself for being tired. I raised a family and worked fulltime for 20 plus years before diagnosis. Think of how much you have accomplished and forget what others think. As someone else mentioned, try to educate them with facts on pbc.God bless and good health to you❣
Thank you. Same as me aches and pains were always diagnosed as fibromyalgia, and then last year I had had enough of being told it was something I should accept and get on with. My rheumatologist ignored other symptoms, so I got a 2nd opinion who was brilliant and done extensive blood tests and diagnosed PBC and Lupus. I have been told I have probably had it for years, but because I was told it was fibromyalgia I accepted these were part of it.I have a lot of rashes as well.
I am nearly 54 have worked in healthcare all my life, but sadly because of the lethargy have taken early retirement.
It is comforting to know there are people in the same boat, although I hate to know that people are suffering.
Take heart. I am 82 years old, and two years ago I was diagnosed with PBC (probably stage 3, no cirrhosis but some scarring of the liver). I retired in ‘99, and my schedule is flexible. I take off Sunday to let my body rest, and the other six days I try to work out. I enjoy biking, using the nearby trail for a 9.5 mile ride, every other day. On alternate days, I go to a nearby gym, where I go 30 minutes on a recumbent bike, followed by about 15 minutes of weight work, emphasizing abs and upper body. Occasionally I do lower body work to help my biking. I begin and end each day with a series of back stretching exercises; otherwise, I probably couldn’t get around very well. While I am doing those (mostly lying on my back on a mat), I am soaking my eyes, dry eyes being another symptom of PBC. Because of the dry eyes, a condition further exacerbated by age, I use artificial tears often. I like to maintain a healthy diet and weight; if I gain a little. I take measures to lose it.Usually I have no pain, and I enjoy waking up in the morning feeling fit. My medical advisers say that PBC will not be what ends my life. Concentrate on a lifestyle that supports YOUR particular needs. You will be glad, and so will everyone else. You can do it.
Good for you Don! You are such an inspiration! I just got diagnosed after watching my liver enzymes go up and down for 10 years. I walk dogs part time, so I get plenty of excercise. I have horrible days of fatigue- no one in my family understands it. I have 2 teenagers ( forget that!) and my husband is very supportive, but doesn’t really understand. I put in a happy face as much as I can - positivity is key.
I just got diagnosed as well. They have been watching my liver enzymes for about 10 years - going up and down, until they were no longer going down. I have some severe fatigue at times. My joints and muscles just ache. It’s hard for people to understand- hang in there. I find the Urso is giving me headaches and I sleep even worse than I used to. I exercise daily - that probably helps. The more you sit around, the weaker you get.
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