I looked online for fatigue rating scales and found this one:


I thought it was interesting. However, I think it's hard to describe my fatigue. The scale is supposed to make that sort of discussion easier.

I'm wondering how some of you experience fatigue. (I have had PSC for 17 years, and recently been told I have cirrhosis.)

For me, I feel worst in the morning. By evening I start to perk up. Then I'm up til 1 am. But I'm not effective at working after 9:30 pm. I'm not effective before 1 pm in the afternoon. So I'm effective for only about 8.5 hours. Lately I sleep only about 8 hrs, but I used to sleep 9 before my GI recommended I drink coffee.

I can accomplish a lot on a Monday. But Tuesday I will "pay for it". That's the essence of my fatigue. Every enjoyment has a price. If I exercise too much, the next day, I will have a hard time getting going. If I socialize til say, 10 pm, it will take me til 1 am to relax, and possibly more time to "process" the next day. Some mornings, I try to rush the process of getting going, but I might feel dizzy when I get up from the bed.

If anybody raced me on doing dishes, I could beat their results if the contest was 10 minutes long, but if it was 40 minutes, I'd be slow and I'd need to rest for about one hour afterwards. So stamina is definitely an issue.

For me, it's the processing time after things that is so long. If I'm stressed out about something, it can take me all night to process. Then, I will need the next day to catch up.

When my family sees me, they don't really see my fatigue because it usually occurs later, when I get to my home.

I wish my fatigue (worse of late) followed a more regular pattern (or preferably disappear altogether..) For years I wouldn't wilt till afternoon, but recently it's been starting mid or late morning. Often accompanied by a light malaise and zero appetite. (LFTs status quo, barring spikes with cholangitis flares). Takes longer now for the fatigue to lift. Often wipe out mid/late evening on couch, sometimes till wee hours - bad habit. . Hard to plan anything or go anywhere involving driving longer than 45 min. I know what you mean about having 8 or so hours of actually being effective and accomplishing things.

My fatigue has gotten a lot better since my cholangitis attack this winter. Still, it partly echos yours-everything has a price, and some days are better than others. Learning how to pace myself is key as well as afternoon naps on the weekend.

For an example, on Saturday, I played a tennis match at 90 degrees, and then hit the grocery store. But then, I did not want to do anything else during the rest of the afternoon.


Tennis match at 90° + shopping?? I turn into a rubber chicken when the humidex hits ~80°.

I filled out the scale just now, and rated severe fatigue. I didn't quite get the un-scored third section. Anyone else fill it out? Do they send you useful information?

I guess it is useful to have some outside measurement, because when it is all an internal struggle -- "can I do this?" I should be able to do that" -- it is hard to keep perspective.

Like others have shared, I can muster the energy to do things -- and in my case sometimes pretty strenuous things -- but I always pay the price. The more I push myself, the worse it is when I stop. For example, I have fallen into dark depression for days as a result of doing too much for too long. It clears as the exhaustion clears, so it is clear that's part of the fatigue.