Fatigue

[Michelle2015]

I have been on urso for about a month now and the tiredness I think is getting worse. My partner emplyed today that it was a coincidence that since my diagnosis I have got worse. Is it me or can that happen. I feel like I have no one that understands me. I am going to have to try to just get on with it as best I can and not talk to anyone about how I'm feeling

[NotorDJP]

When I started on the meds I didn't feel better right away either. The thing is, the meds will help your bloods and your liver to be less inflamed, but it doesn't always take the fatigue away. My fatigue got better in some respects but it didn't go away. I have less liver pain now than I did and less lower back aches etc. You have found a good place to come and talk about your PBC. Most people don't understand what this is about. Even those close to you or those in you family don't get it. We don't look sick on the outside usually, and with women we mask it with makeup and other things so you really don't look how you feel. Only people that don't see you for a long time might actually see that you are tired and struggling. The problem arises when you really can't do what you used to do and people just don't understand. I have found that its better just to not explain and just try to get on with your life. They won't really get it anyway. Nobody who is well and never had a chronic condition will really understand. Most people just aren't empathetic enough.

[boneytoys in reply to NotorDJP]

Well said

[lkraft in reply to NotorDJP]

im on stage one

[gizocsi]

Dear Friend, don't worry, YOur partner can be right, but it can be also of the stress, caused by the bad news. Here we all understand You, I think, we can communicate our problems better to outsiders, when the shock of news is over. Anyway, You can learn a lot here, and You should know, that all cases are different. In the beginning I thought I'll have all the possible symptoms and complications, but of course not. This fear is present, but as I was diagnosed 4 years ago, ill about since 2000, this fear calmed down, sometimes I'm very happy to have this and not other illness. And with understanding: it's not so good if people all know about YOur serious problems, You can not talk with them about normal things, only about PBC, hmmm -- life is so interesting, full of adventures and sympathetic people, but this forum is for us, to have chats about the problems. Before I knew what's to have a serious disease, I thought such groups are an unhuman solution for solving our problems, but that's not like this. Be well, please write always, if You need some tender words.

[Nlaturno]

Michelle, I understand completely. My experience was the same. I was diagnosed one year ago. I was sick and fatigued for two solid months. My doctor moved my Urso doses both to bedtime which ended the daytime sickness. After two months adjusting to the URSO, the intense fatigue got a bit better. I'd say it's only in the past month that I'm starting to have some better energy - not good, but better. My husband also said it was impossible that I was suddenly fatigued after diagnosis. The truth was, my fatigue set in a year earlier - he just got home from work after I had napped. I work a very high pressure executive job, am in my 50s and am doing fine. Be patient with your body. As far as the frustration over your partners lack of understanding, I've got no advice. I'm as frustrated as you are in that regard!

[exy21]

I've recently started on urso and fatigue has got worse. Back to cat napping 2-3 times a day after 9-10hrs sleep! Did that before I was diagnosed. Hoping blood results are worth it. In regards to understanding agree with all previous above. I now have a partner who doesn't give opinions on how tired/ ill or not I am. But others do comment. You need to talk on here and ignore others.

[Geordielasstx]

Huge hugs. I was the same after being dx a year ago.

I felt my whole world had come to an end. Still struggling with coming to terms with it.

Since dx my symptoms got worse and magically appeared. I put myself under more stress than nessisary and had a pity party for about a month.

Try to find harmony between the two. When your not feeling your best try to rest. I think the hardest part is accepting. We have all read the worse case on the internet and this puts us into even more of a spin.

Rely more on the members on here and the Facebook pages. They have the same as us and can advise is from their experiences.

Try not to let Pbc domain your mind. It did me and it was hell. Tell yourself you have this and will adjust and live with it. Baby steps daily. The nicer and kinder you ate to yourself the better you will feel.

On your good days live on your not so good days rest and listen to your body.

Big hugs and it is a constant battle but we can get there. X

[GrittyReads]

I'm not in your situation (only still just 'at risk' of PBC), but I do sympathise, so much.

As Notor and others have said, you have found a good place here to come and talk about your worries and offload. As several of the comments have said, it is typical for the fatigue to be worse for a while after diagnosis and first starting Urso. It takes time for your liver to begin to cope better, and for all the other systems to begin to slowly get back to trying to function more efficiently. Also, you body is suddenly having to deal with with this strange chemical that it has to tolerate and process.

On top of all this, you are stressed having received a scary diagnosis. However, PBC is not the dread condition it once was, as Urso has made a huge difference to people's lives. If you read through other posts on here, you will see that the vast majority of folk, after a period of readjustment, are able to get back to a pretty normal life, with typical life expectancy. But the stress of the diagnosis is still with you, as well as the feeling of post-trauma ... (almost) collapse. You no doubt held yourself together through all the waiting, and tests and examinations and meetings with GPs and consultants. Now your body and brain have probably gone, 'aahhhh ... now I need a rest' ... It's normal. Don't beat yourself up. It will get better, and with time you partner may well come to understand more - I know mine has.

Meanwhile, try to treat yourself, be kind to yourself, avoid stress, do things you love and make you feel happy. Spoil yourself. And you can always come back on here to chat.

Take care,

Gritty.

PS If you are not already a memner of the PBC Foundation, then join. there's a link to their website at the top of this page, and you can phone their advisors for a chat. Also, if you join you will get the handbook - you could leave it around, casually open at an appropriate page for you partner to read, maybe????

[Hidden]

Hello Michelle2015.

Well from experience urso doesn't seem to be something you take and automatically feel the difference.

I was diagnosed Dec 2010 with PBC and started on urso. I had started itching early 2010, that was the reason I went to the GP. At the time I was fatigued but never thought anything of it due to the fact I was a Manager in a retail shop and working over my allotted weekly hours. I thought my itching got a bit worse following taking urso but can't say if that was right or not as over the last 4yrs the itching has shifted to night time and back during 2010 it was almost 24hrs a day. I also developed heartburn after starting urso but this and a bit of tummy bloating did vanish within a few months of starting on urso.

The fatigue in my case vanished at some point during 2011. With improved blood results over the last 4 years although they are still abnomal they have been slowly coming down in that time.

I think it is a case of taking urso and then with the liver not struggling as it probably was pre-urso slowly we start to regain a bit of normality back to our digestive system and certain symptons can improve somewhat. The thing is though with PBC itching and fatigue are apparently the main symptons and taking urso is no guarantee that they can eradicate these two, most taking urso with improved bloods can find that things do change a bit.

Due to the fact too that you are only recently diagnosed as I take it you are with starting urso then I expect the fact you have PBC and you are early days with it all has added further to how you are currently feeling. I think you need time to get used to having PBC - I never thought I would but I have over time - and with more time and improved bloods you do start to feel a whole lot differently.

I was 46 at diagnosis and after some time, my husband and I decided it was a case of enjoy life as we can as you never know what is round the corner. Make those memories and live the day as it is the last if you can.

I wasn't sure how I'd be a few years down the line from taking urso but here I am 4yrs on and almost 5yrs when I started itching.

I shrug aside what could happen worst scenario with PBC as I refuse to think about it. I decided long ago that I would deal with things as and when and not waste time thinking about what could be as it m ight never happen.

Now you are on urso, take extra care of yourself. I eat healthily than I thought I did pre-PBC (I was never at the doctor pre-2010) and go with how I feel day-to-day. There are the ups and the downs but that is also how life is regardless.

[PCBnPBC]

Michelle 2015

I was diagnosed Feb 2012 with PBC, Dr kept on asking me what symptoms I felt, I replied none (apart from not feeling 18 yrs old!! (I was 60)) put on Urso etc, then 3 months later I started to feel ALL the classic symptoms of PBC including fatigue, and encephalopathy (big style, behaving very weirdly, Citalopram helped as did Rifaxomin) Anyway it seems from 20 /20 of hindsight, my PBC was probably 20 years old, I just noticed it at the very end, and the last 2 years I became exceedingly ill, liver transplant 02 Nov 2014 and today I feel like a new person, so yes, it can happen like that, NOTE I am not saying you will neccessarily follow my route, but what you describe happened to me!

[Karaliz in reply to PCBnPBC]

So great to hear of your successful transplant and wishing you a wonderful rest of your life! That's fabulous news.

All the very best,

Karaliz

[Michelle2015]

Thanks everyone, it's good to be able to talk about it with people who understand