Anyone have extreme fatigue with primary biliary cholangitis (PBC)?

Hi, Michelle. I'm glad you're happy with your conversation with Mayo! I was happy with my visit in Jacksonville, and they've been very good with follow-up. I'm responding here because I see you also posted about fatigue. Same here, Sister! I have lived with fatigue my entire adult life, as I was diagnosed with lupus in 1991. But with the PBC, my fatigue has now gone to a whole new level!

I feel it’s progressing

@ejones131 mine is as well.

I was diagnosed with PBC in 2008 and the extreme fatigue is definitely for real! I never know what to expect from one day to the next, regardless of how much restful sleep I’ve had. Then in 2021 I was also diagnosed with hEDS which also has side-effects including extreme/chronic fatigue. I have lots of other things going on, too, so I’ve just had to try to adjust my daily activities and plans to match my level of pain and fatigue. It can be really hard and I fortunately had a friend introduce the idea of “counting spoons” and this has helped me to be more mindful and in tune to how my body feels.
You are definitely not alone, though it can easily feel like it, and I feel it sometimes, too. These chat groups have been really helpful. I hope that I have helped you, at least a little. Keep smiling!

@aeiou13 - will you share more about the idea your friend shared with you about "counting spoons"?

Hi, she said it’s a way of pacing yourself based on how you’re feeling. So when you wake up and are about to get “into your day” (whatever that means for you - for me it’s getting my coffee and turning on the tv since I can’t do much anymore). Think about how you feel and give yourself a certain number of spoons to represent your energy for the day. Each time you use energy - again, this is an individual thing - you take away one spoon. For the day you only “exert” yourself as many times as you have spoons. Sometimes things you want to do just will have to wait until maybe the next day. I hope this helps.

I also have checked out “Visible” - it’s a pacer for just this thing; for invisible illnesses. Wearing their (Polaris?) wrist or arm tracker measures your heart rate and will let you know if your body is in “exertion” zone, “active,” or resting. Once you’ve worn it for a few days it sets a maximum amount of pace points for you. Exactly the same concept as “spoons.”

I’m a long-winded talker (and typer, haha) and I know this is a lot. Definitely worth looking into - it really does help. 🙂

@aeiou13
Hi again. Just to be clear, that “Visible” app does have free options, but that wrist/arm tracker will cost money. Didn’t mean to be misleading. I had it and it was great, but I’ve had to retire because of all my health issues so I had to cancel it. I still do check-ins to see my heart rate variability (hrv) and keep my focus on only doing what I feel my body can do.

@aeiou13 thank you so much for your comments and the information. It really does help to know that I’m not alone in this. To hear others share their personal experiences is very comforting.

@ejones131 it’s so ridiculous that some days I have to take three naps. Other days it’s not so bad and maybe I only take one. I have to drink extra caffeine coffee to be able to do things and double caffeine if it’s particularly challenging. I used to watch my grandchildren and there were days when I thought I am just not going make it.

I am checking in, @michellesauer to see how you are doing. I notice on your profile you have an appointment scheduled at Mayo Clinic scheduled with a PBC (primary biliary cholangitis) specialist.

How are you feeling? Have you had your appointment yet?