Re: tired at stage 3

[Guest guest]

Bill gets hit with fatigue and supposedly his PSC is mild. The Dr.

thinks it is his UC that is wiping him out but we really don't know.

Lee

> Just wanting to know if anyone else is showing fatigue at stage 3. 

> This is JD's biggest symptoms and we are unsure if it is from the

> liver or upset pouch.  It is the one thing that seems to be

> controlling what to do.   His hep seems to think that this should not

> be a factor until stage 4.  He is sleeping 10 hours most nights and

> still knows when 1:00 in the afternoon comes around.  Any input?

>  

>  

[Guest guest]

& JD,

Okay, fatigue was my very first symptom in 1990, before any medical

doctor would have been able to see PSC on biopsy or on ERCP. I was

clearly pre-stage 1. I've had it ebb and flow throughout the years.

Now, at stage 4, I have it the worst ever. Stage 3 is certainly a time

when fatigue could be a major problem. Tell your hep that it isn't all

in JD's head! You don't have to have cirrhosis to be fatigued with this

disease!

I'm not sure if I have any advice for controlling it. I can describe it

as the flu-like feeling of achy tiredness that goes through to your

bones. You simply get to the point where you don't even want to hold

your head up. My husband has been wonderfully patient with me over the

years in making sure that I listened to my body and did what was

necessary for sleep.

I hope this helps! Doctors really should have to live with every

disease imaginable for one week during medical school. I think this

would make them less likely to say that anything was impossible...

Take care,

Deb in VA

PSC 1998, UC 1999, listed Ltx 2001, HE 1/2005, MELD 19, LDLTX scheduled

May 19

> Just wanting to know if anyone else is showing fatigue at stage 3.

This is Any input?

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