I’m really struggling with severe fatigue. I can barely work and it’s just me income wise. Has anyone had success with anything that helps? If I exercise I can be down for a whole day. So that has not been helpful yet.
It’s just awful. I’m really over it! I tried a sample of Sunosi but I still felt awful. Just more awake but with a headache.
Sorry to say, no. This has been the hardest symptoms for me, too!
Are you taking Urso? Have you been tested for any other autoimmune diseases?
(I also have Sjogren’s disease, the main symptom is also fatigue! I did find after several months on hydroxychloroquine for Sjogren’s , I did have some improvement.)
Hi! I had a negative ANA test right before I got diagnosed with PBC. But nothing else has been found. I probably need to start pushing my doctors to look for other things. I’ve asked about help for the fatigue but they really have nothing to offer. Yet. Just tried the Sunosi. I tried it again today because I hit a wall. Didn’t do squat! Sigh
And yes! Taking urso. That helped a lot of symptoms but not the fatigue. So annoying.
I struggle with fatigue as well. It took me long time to get over the fact that it will unlikely to go away completely for me. Now I try to do fatigue management. I get the most taxing work done early in the day. Black coffee, lots of it helps me get through the afternoons. Light kettlebell exercises throughout the day, plant based diet and micro sleep (10~15 mins) when I feel like it. I work from home and have a tech job so work on my computer mostly. Unfortunately it will most likely be a discovery process for you to see what works for you. Good luck. You will find a way.
Thank you. I do have to manage the energy that I have. It’s just not enough at the moment for everything I need to do. But I’ll keep trying! 
I'm 59 years old was diagnosed with PBC 2015 and I take 600mg of Ursodol daily. I had to stop working this years January due to severe fatigue and itching. I was using FMLA year of 2023 to be able to stop working to rest when I could no longer work due to fatigue and itching that requires me to take children's liquid benadryl to calm my itching attacks but makes me tired. I've also been on Rinvoq 15mg it helps me not to itching as bad and cleared up my bruised scared skin after starting it 2 years ago but now I have high cholesterol from taking it so was just put on cholesterol pill. I've worked for hospital Finance Department 27 years but now been off although I was working from home I couldn't do anymore. Unfortunately, I have no income after receiving 6 months short term disability my long term disability has been denied and I applied for SSA it was denied so now I have attorneys. It's sad that this disease falls under qualifying for social security but they want you to be final stages. Hope this helps and wish you luck as I know fatigue is overwhelming and no one understands besides us that have to deal with it!
LIVE 🌎 LOVE 💖 LAUGH 😅
I’m sorry to hear about your disability denial! Hopefully the lawyers can help. And yep. Nobody gets it around me! Quite frustrating.
PBC for over 20years
PBC for my 54th birthday symptoms suck.
Hepatocellular Carcinoma
High Alkaline Phosphatase
