Newly diagnosed. How does PBC impact existing health problems?

[CheshireEm]

Hi

I was diagnosed with PBC four months ago after having a series of confused / dizzy spells leading to scans, blood tests. So I did all the practical stuff, I read the leaflets, improved my diet, took my Ursofalk and bar a few stomach upsets it was business as usual. From what I've read at this point I was considering myself pretty lucky.

In parallel to this I have degenerate disc disease. Since a spinal fusion a few years back this goes through occasional flare ups which need rest and extra painkillers but over time I've been increasing my physio and this seems to have been reducing the flare ups and my recovery time is quicker. Again so far so good.

Returning to work in the new year I had a really busy week at work and traveling to other sites in the UK, carting around an overnight bag etc and my back goes into agony. Now for the bit I wasn't expecting. This was the first time my back has had problems since getting any symptoms of PBC and it absolutely knocked me off my feet. For the first 4-5 days I slept most of the day and since then have been completely exhausted all the time sleeping 12 hours at night and still needing a nap in the afternoon. Is this normal? In other peoples experience when there are other problems should I expect to see my PBC symptoms get worse? It's all very confusing for someone new to the condition. I need to talk to my manager about how my condition will impact my work and frankly I have no idea what to expect! Any thoughts / advice??

Many thanks

[kittysue]

Tiredness seems to come in waves and id print off the definition of pbc from Internet and give to work to read , thats what I did. They have to accommodate the new you, if you need to rest for ten mins you, they have to let you ? Hope this helps x

[SC49]

Tiredness as you have described has been the biggest problem for me along with memory and concentration problems. These have been my constant companions for far too long. However, I know from other people that sometimes these issues resolve themselves.

If you are talking to your manager, as kittysue says, take some information with you because you can bet your life that they will have no idea what you are talking about. i would strongly recommend the information from the PBC foundation because it is concise and correct.

[CheshireEm]

Thanks both. I think that's a great idea to provide them with the PBC foundation leaflets. I have the PDFs so can email in advance. I've seen a number of people comment that people hear "cirrhosis" and think 'drinking problem'. I've been surprised already at how times I've had this reaction and had to explain the difference. Maybe we should campaign for a better name

[Hidden in reply to CheshireEm]

Also checkout the Liver North website. I find it also very useful. You can request a free copy of the dvd they can send out to you all about PBC. You can also look up at their latest and back issues of their newsletter for further information. Might prove useful to get your boss to read some of them online if that is what you want.

[JennerLayne]

DX'd nearly a year ago, I find my tiredness and 'flares' seem to come and go in spurts --- yet I also am starting to notice a correlation with my food intake. When I feel well, I eat well, and when I feel poor, I don't want regular food and lean toward sugar cravings which perpetuates my issues. It becomes a vicious cycle for me. Aside from working hard to monitor and follow a low fat, low salt, low sugar, and gluten free diet, I too travel often for my job, and it's just the little things like carrying around the bags, checking in and out of hotels, air travel, driving that takes the wind out of me for days on end. I find too, that my general stamina comes and goes in waves. Some days I am exhausted and other days, I surprise myself with what I'm able to do. One thing that helps, is carrying B-12 tablets that melt under my tongue and give me the added boost to get through rough days.