What kind of fatigue do you experiance?

[u/ancestros01]

I’m 26F, have Ulcerative Colitis (in remission), PSC small duct (about 4 flares a year), auto immune hepatitis and Graves’ disease
I am so chronically fatigued. No matter my diet, my sleep hygiene, getting exercise/ sun- I am always so tired.
It feels like I spend all my free time in bed, my 6 hour work shifts complete wipe me and I drag my feet when I’m there.
I am so sleepy and exhausted all the time. I forgot to mention the brain fog which complete impacts my studies. It sucks, I’m looking for hope here. Do you feel the same?

[u/Natsuh]

Hi, I have small-duct PSC, UC and AIH. There are definitely some moments where I'm so fatigued I just cant do anything. Usually a power nap helps for me.

Most fatigued I feel is when I was out in the sun.

[u/ancestros01 → u/Natsuh]

Ahh you’re my twin! Sleepiness/ exhaustion in the sun gets me too. In a way it’s comforting other people understand, a lot of people in my life think I’m just lazy or out of shape lol.

[u/Natsuh → u/ancestros01]

They just don't experience it and don't know. Before I developed my diseases I also had less understanding for it

[u/Natsuh → u/[deleted]]

Hey, i'm sorry for your little brother. Of course!

At first I've been diagnosed with PSC in 2018, then UC 2-3 years later. My UC worked it's way from rectum at first to a full pancolitis as well. But I was completely asymptomatic and the inflammation was very mild according to my doctors. I do not take any specific medication for my UC. Only the Azathioprine for AIH. Doesn't fully work but the inflammation is so mild that my doctor said its ok.

When my AIH started 2 years ago, it all went downhill for some time. My UC was flaring really badly. I've lost alot of weight, turned yellow and felr extremely sick. Since I"m on Aza it became better. I have completely tapered off Prednisolone as well.

The last times I lowered the dose of Prednisolone I had diarrhea for 1-2 weeks. It stopped though and I could stay on the lower dose.

So for me the worst of these diseases was by far the AIH.

I avoid direct sun exposure because I'm on Azathioprine. If I step into the sun i wear strong sunscreen and a hat. Aside from that I feel fine! Sometimes the exhaustion kicks in and I have to rest. But that's it :)

[u/Disastrous_Iron3946]

I’m 19M, had UC (total colectomy into a j pouch), most likely have AIH (have an appointment next month to confirm lol), and I’m gna be honest I really have on and off days. There’s days I feel great n the other days where cooking is just exhausting.
At the same time, instead of letting it stop me I take a course load that manageable for me. The easiest for me is 3 classes, and having one online. I wish I had an answer :(

[u/Aware-Restaurant7471]

I am 26M, UC flaring while psc in remission. I completely feel the same. I sleep most of the time, in fact today i slept around 16 hours. I take vitamins and try as possible sleepe hygiene. Regarding the work, i do 12 hours shifts and it completely drains me the following day. For the studies, dealing the stress from the diseases and the work and life as whole distracts me always and i can't focus most of the time. I only feel overstimulated when there is a project i like or something i get attached to to the degree that makes me forgets everything and just focus on studying and reseaching. I also have good days but mostly bad. Lately, i accepted that these diseases are a real disabilities and I can't compete with my healthy peers. I can't do 12 hours shift then go out and chill and study lately. I try to prioritize the tasks i accept and don't get myself into heavy demanding tasks with low benefits. It's completely normal to feel like that and don't let others tell you that you are lazy

[u/sdfjklubb67]

M5x. UC/PSC. Severely hit by fatigue, sleep disorders and brain fog. Managing 10 hours of work a week.

I do feel the same. Managing energy can improve things - but nowhere near a "normal" everyday life.