The mental side of PBC

[lovesoccer]

Over 2 years on Urso and my ALP is in the normal range. Ultrasounds show an unremarkable liver. Yet I experience periodic feelings of despair and panic at having this disease … and I think I’m one of the more fortunate individuals, so then I feel guilty for how I feel. Anyone else experience this periodically?

[Cascade35]

Absolutely yes. When I was diagnosed 18 months ago it came as a shock so I was in denial, hid it from everyone and was left reeling. Starting Urso made it even more real. 18 months later I’m better with it all but when I have blood tests or a Fibroscan, it triggers me back to the original anxiety days. We have to deal with it for the rest of our lives and that can be overwhelming at times, hoping it’s progression is slowing down

[Susn in reply to Cascade35]

So true for me as well. Even after 14 years, any doctor's visit makes me makes me terribly anxious. The PBC diagnosis was a total surprise - discovered during routine annual physical. I had not felt unwell and suddenly I had an incurable disease! I'm now taking an antidepressant and that has helped a great deal.

[exy21]

Do you think it could be the Urso as that's why I can't take it? It made me so depressed. I'm on benzofibrate instead, no side effects and bloods great on it. I'd discuss with your specialist just in case.

[Readlots]

Me too. I’ve been on Urso for years now. I thought it was the menopause, and/ or just me.

[DonnaBoll Administrator]

I'm so glad to read several responses to this. In my own experience there is always that thought that "what if" my numbers are really bad, "what if" I suddenly develop ascites or edema in my legs, "what if" I suddenly start having difficulty with mental clarity. This is a reality for many and we know that. We just have to believe that our numbers are good, are scans are good, and we are ok. Some days it just takes more convincing. I, too, take antidepressants. They help me for sure. You are not alone in how you feel. It's always in the back of our minds believe me.

[ninjagirlwebb]

I think it is perfectly normal to feel the way we feel. I have been diagnosed for 10 years now. And I was a mess in the beginning…really not sure how I managed to pull myself out from that low point. It got better as I got to know my hepatologist more and trusted him to take care of the pbc stuff. My role is to live my life, be happy, take my medication and do all my needed medical appointments.

Since we don’t know what life will bring us from one day to the next, I live life in the moment and do the things I enjoy such as if I want something, I wont wait for a special occasion, I just buy it if affordable. Or if I want to try out a fancy restaurant, I just go or if I want to go to somewhere on vacation, I just book it and go. Living life in the moment is a good way to live.

[DebatDG9 in reply to ninjagirlwebb]

That’s the same effect getting a diagnosis has had on me. My way of thinking is that the Universe had already tried more subtle ways of messaging me - which I’d missed or ignored - live in the now not in the past or future. Can’t ignore this message so I try to live in the NOW!

[DonnaBoll Administrator in reply to DebatDG9]

live in the moment for sure! great advice for everyone....control what you can control. This is key when anyone has a chronic disease. We have to know the difference to have any peace with our diagnosis.

[DonnaBoll Administrator in reply to ninjagirlwebb]

I love every word you said!!

[DonnaBoll Administrator]

How are you doing?

[lovesoccer in reply to DonnaBoll]

Thank you for following up. I’ve been a bit more symptomatic lately - more itching, tired, a few muscle cramps. It has me worried, I’m not going to lie. Am I progressing? Am I responding less to Urso? This is where the mind games start to play.

It’s probably stress. I teach in addition to my full time position and I took on one too many classes. Lesson learned. But I’ll always forge on.

[DonnaBoll Administrator in reply to lovesoccer]

Take a breath.... you said your labs are good. That is a very good thing. Seems like you have maybe too much on your plate. Sounds like you realize that. We have to control what we can..... making our lives less stressful can be good for many reasons. Stress can cause the liver numbers to rise. Being tired and some itching, unfortunately goes with PBC. Running in too many directs can certainly make you tired as well. Sometimes it's hard to tell what the fatigue is from - but that doesn't change the fact that it's there. When are your next labs due to be drawn? I would be surprised if they were much different. I think you need to take care of you! I think you know that though. Have you ever tried some relaxation techniques? For me just taking several deep breaths helps me 'regroup' when I get stressed. Deep breathing, listening to your favorite music, going for a walk... have you ever tried yoga? I like chair yoga. So much easier for my knees 😊 I hope maybe you can be open-minded to try some of these techniques. Maybe you can google 'relaxation techniques' and see what appeals to you. We all need to learn to care for ourselves and have 'tools' to help us do that when we need to stop and 'regroup'.