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Fatigue With Pbc

I have recently found out that the latest thinking is that the level of Fatigue is related to Anti Mitochondrial Antibodies and not dependant on Liver Function Tests. I suffer from pain and fatigue most likely caused by PBC though I have other problems as well. Some suggest that taking co q10 could help with the fatigue although I haven't had a chance to try this yet. My Liver Function is still good but i have antimitochondrial and antinuclear antibodies=pbc. The co q10 could help with fatigue as it is supposed to help with energy release so is worth a try. I hope someone finds this information useful and hope you are all learning to cope with this horrible disease. Best wishes, Paul.

thehubby thehubby 51-55, M 4 Responses Nov 19, 2009

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I was diagnosed with pbc 8 years ago alongside c.r.e.s.t. syndrome. (An autoimmune connective tissue disease - rare and of unknown cause.) I was a very energetic active person and find the degree of reduced energy levels extremely frustrating. My brain still thinks I am more capable than i am, and as I live alone now, there is not much moral support. I do not know how long I have to live and feel in a void all by myself. but I am keen to laugh and share experiences of all kinds with others. I am female.

Had to join to let you know that i was also diagnosed with crest syndrome along with pbc. It took many years of "one thing" at a time, until finally they were able to figure it all out. fortunately, I caught it fairly early so am doing fine. so far it as been about 18years and liver funtion panel is stil about the same. the alk elevates often, but I always work hard to get it back down by eating right and excercising. all in all, I am still active and healthy.

Hi Julie<br />
All I can do is sympathise unfortunately, I had Coeliacs disease and was tired all the time then when diagnosed with that I started on a Gluten free diet and started to get better but then got worse as my immune system started to improve and I was found to have PBC which had probably been masked by the weak immune system. The fatigue I then suffered was worse than the tiredness - it is known that the fatigue with PBC is unlike any other type of fatigue and yes unfortunately it makes it very difficult socialising when you don't have the energy for it. If you're like me you'll probably feel better when you catch a bad cold which gives the immune system something else to focus on!! I went on to get bowel cancer (unrelated) and had half my colon removed and felt much better after the op for the first week or two - yet again must have given the immune system a different focus!! Now on intravenous chemotherapy which makes me feel a bit better some of the time through whatever effect its having on my immune response. The white lumps are probably able to be sorted on the NHS, best see your doctor for a referral.<br />
Very best of wishes to you and I hope if you show your family this response they may be able to better understand how awful it is for you.<br />
Cheers, thehubby.

Hi Cowren<br />
Learn to pace yourself, even when you feel up to doing things, if you do much/too much it will make you feel worse. It helps if people around you understand this. It can get easier, when my Antimitochondria level fell (something that can just happen for no reason), I wasn't as bad with the fatigue. Acceptance by yourself and others of your illness and its limitations helps with the depressive effect of having such an illness which can then help improve the fatigue. I was lucky in that I retired on ill health recently and that has also helped to some extent. Some people can get an improvement of the fatigue from Modafinil (ask your consultant) although I found it of limited help and gave it up after a year. Very best wishes in coping with this, take care and try and stay positive.<br />
All the best, Paul.

Have you made any progress with your fatigue? I have just been diagnosed.<br />
This is the hardest thing to cope with