Tips for coping?

Hi all,

I’m in my second year of having this disease (officially that is, it’s likely I had it and was undiagnosed for the past five years).

I am very fortunate in that the urso is working and my blood results are completely normal now for the first time in five years.

I wondered if any of you could share little tricks or tips you have found to help you cope with the many varied symptoms of PSC. I also have IBS which I am learning to live with.

Some helpful things I’ve found are: hot showers or baths (sometimes with epsom salts) seem to help with itching, heat packs tend to help with pain, lemon juice or chamomile tea seems to help if I feel nauseous after a meal or have an upset stomach.

I am not into “alternative medicine” and if anything I’m wary of trying anything without my doctor’s approval. But would be interested to hear if others take vitamins or drink lemon water or other things like this. I will then discuss these ideas with my doctor.

In particular I’m finding the tiredness difficult and I’m yet to find a solution for that. My mind gets a bit foggy at times and I’ve also found I have a non-existent sex drive. This only occurred since being sick so I wondered if this was linked, I hope that’s not inappropriate to ask. Similarly my ability to “bounce back” after exhausting activities isn’t great. I find it harder to recharge than I used to. Do others experience this? If so how do you cope?

Would value any tips from those who have been living with this confusing disease for a long time. I am so grateful for this forum. I’m yet to meet anyone who has PSC.

Hi, I’m sorry I don’t have any advice but I am hoping some do! I feel the same way. The fatigue is awful. I know if I don’t drink enough water, I run into more problems.
Thank you for asking the questions. It does help to hear we are not alone in our struggles.
Take care,

Oh I am too struggling with fatigue.

I’m supposed to be working full time but struggle to do a 6 hour day, then I come come and I’m a huge grump. My kids don’t understand and think I’m angry at them.

Any tips would be a huge help.

I am wondering if anyone has tried Adderall for chronic fatigue? My husband has MS and is on Adderall, which really helps him. I hadn’t thought about that before now.

Fatigue is a big side effect of PSC. You will have days where you have more energy and days when you just come home and collapse. The more you educate your family about what PSC is, the side effects of it and the seriousness of the disease then it begins to hit home hopefully. PSC is hard for people to understand. In the early stages you look normal just like everyone else on the outside, but the more the disease progresses then the visible obvious things will start to show. You need to prepare your family for the changes to come and that you will need all their help to help mommy through the difficult days ahead. If they are older teenage children I’d encourage you to be as open as their maturity can take such news. I found the more I shared with my two girls the more they were able to be a blessing to their daddy even in simple things like rubbing my feet at night when I felt bad, rubbing my back, etc. At some point it would be appropriate to tell them that one day you will need a life-saving liver transplant and that you will need their help and support through those days as well. If they are older children, take one with you to your appointments and let them take turn hearing the doctors and the progression of the disease as things unfold. You will be surprised at how much they will come to your aid when they understand more.

PSC 2011 / Liver Transplant 2015