Don't know what to do.: The two thing I'm... - PBC Foundation

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Don't know what to do.

Leighton56 profile image
8 Replies

The two thing I'm really fed up with is tiredness and memory loss. I'm 58 and to be quite honest I'm frightened to death of what is to come. I've been diagnosed two or three yrs ago now and it just doesn't seem to get any better I'm on Urso, but now my knees and hip hurt having Gynelogical problems. My Depression and anxiety have started to make its presence felt, I'm worn out and just don't know what to do....

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Leighton56 profile image
Leighton56
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8 Replies
Brummi profile image
Brummi

Hi, being scared makes you normal , about not knowing the future. Take on any problems as they happen don't look for them. Sort out any problems one by one , dealing with more then one at a time will only confuse you. As for tiredness take little short breaks throughout the day find a spot and relax. I hope this helps a little there is a lot of good folk on here all willing to help and chat...

Leighton56 profile image
Leighton56 in reply to Brummi

Thank you for your help, I am allowing it to get on top of me at the moment. Normally I take one thing at a time but everything is presenting it's self all at once and I'm being overwhelmed by them. Time to step back and re evacuate i think. Thank you again.

Brummi profile image
Brummi in reply to Leighton56

Hi, thats the way I deal with things. But being honest the mad rush of problems has dissapeared so better times are ahead for you..

Yvonnejulie profile image
Yvonnejulie

Hello, we are all allowed to have some bad days when everything is getting to us, we feel poorly and eventually every thing gets us down, try prioritising house work etc and do just what you need to when your on a bad day, take time out and listen to your body, have a soak or a nap without feeling guilty. Are you taking any vitamin D? I found this helps a lot with achy bones etc? Hope you feel in a better place soon.

PCBnPBC profile image
PCBnPBC

As Brumi says, you are most normal. I had what you report too, Hepatic Encephalopathy too, and found an anti depressant (Citalopram in my case) helped to stop my anger that was much spurred on by H.E. ) you can not fight the fatigue, so rest. Good luck.

tonia66 profile image
tonia66

Not sure this is welcome info and of course EVERYONE processed meds different... my doc keeps asking me about fatigue and so far we have figured out that the only thing keeping me from experiencing the extreme fatigue from this is my Wellbutrin prescription. When I don't take that I can barely get out of bed. I took it originally because of my husbands second cancer diagnoses, stayed on it because it helped with my energy level and periods....this was wayyyyy b4 my PBC diagnoses....but if they miss a dose, seriously I chat function....

Hello Leighton56.

Given the mitochondria cells are 'power cells' I guess it can figure how we can get tired/fatigued with PBC (I have to say I count myself lucky that I had fatigue pre-diagnosis 2010 and at some point it vanished during 2011 but I do get tired odd days due to broken sleep at night caused by the itching). That's my theory anyway and if it said that we have AMAs the Anti-Mitochondrial Antibodies present in PBC and also given the liver is one of the main stays of our system (I once read that it is known as the liver and possibly due to the word 'live' in it, as we cannot do so without one), it works really hard doing a multitude of tasks to keep us ticking over, maybe this is why.

As daft as it might sound I did find that keeping on the move for me keeps the itching at bay (well prickles that are the prelude to itching) during the day and I sort of stem off feeling tired. Can't say it is good for keeping weight about your person though, I must burn a lot of energy during the night with fidgeting and getting up out of bed several times when awake due to the itch. I only take the urso, have since daignosis and pre-diagnosis hadn't had any prescribed medications for over 10yrs.

Leighton56 profile image
Leighton56

Well today I found out why I have been feeling more unwell than normal. I have cancer of the womb and will be having a hysterectomy in the next couple of weeks. I'm not unduly worried as they think it's in the early stages. My poor body having to deal with something else.

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