This last week I've noticed a sudden change ... it used to be the 5 full time days was a lot and yes I was tired all the time... now I seem to be tired of course when I first get up but then have a bit of energy in the morning but by the end of the morning - I'm tuckered right out - eyes so tired they're stinging. Makes the rest of the day hard to get through.
Anyone notice patterns in their fatigue? Like do you find you get more tired when you're hungry? Or any other patterns you've noticed
Hello Becca,
I suffer with the fatigue a lot, it was the symptom along with joint pain which first made me go to the doctor.I have found over the years that I have periods when it worsens, I have some relatively better weeks although still very limited in what I can do and with constant tiredness, and then terrible ones spent mostly in bed, but then very occasional better more normal days maybe one day in six months, despite trying to keep as fit as possible I have no stamina.I find normally can walk around 3500 steps then have to slow right down ( I have a pedometer) as I walk my speed falls again and again, like changing down the gears on a car, its like a battery running out of power.I took part in a clinical trial for fatigue run by doctors in Newcastle.I think I had the placebo but other ladies said they had good results, so there is hope for a treatment for this aspect one day.As part of the trial I went on an exercise bike while being monitored and interestingly I could see on the graph that something was happening as I became fatigued, I found this interesting.The only thing I have found to help is pacing myself and when I have to rest I do, it's very frustrating.
Jane
Hi Becca
My fatigue comes on as the day progresses. I wake early and I'm ok in the morning, but by mid-afternoon my energy is fading and by 5 - 6pm I have to rest completely. I laugh at myself struggling up the stairs in the evening with a long pause on each step! I've read that this am/good, pm/bad is a common pattern for PBC.
Sorry to hear that your energy runs out by midday. Are you sleeping ok? Anyway, be kind to yourself and don't push too hard.
Becca I also thought - if the change is sudden, should you get a blood test and check-up with the doctor in case something else is causing it?
Just rested on the bed after lunch to listen to the afternoon play on the radio, and the next thing I knew it was three hours later! Spark out - and that is not unusual. I have to have a doze most days in the afternoon. Drives me mad that I have to waste so much time sleeping, but that's dear old PBC for you!
I am feel fairly normal in the morning but by 2pm that's me done on any kind of activity apart from doing something sedate. I find it really frustrating and sleep doesn't make it any better. By 4pm my eyes are red sore and gritty, that's when I use some eye drops and lay for a while with an eye mask which helps. By 8pm I can't put one foot in front the other without feeling disorientated and normally lay down then.
I hear you with the feeling disorientated. I've fallen a few times because I'm just out of balance from being tired. The other night, I was laying in bed and my son came in to say goodnight ( I wasn't asleep yet) and I was far too tired to even talk...
How many days supply of urso do you get prescribed?
Fatigue. Why are some days better than others? Is this normal?
So tired some days that I don't feel like I can hold it together
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