fatigue

[Cumbria7]

Hi

I am so overwhelmingly tired I cannot express how tired I feel, to me it’s a different kind of tiredness and as said it’s completely overwhelming, I appreciate that you should try to move about but I just cannot be bothered. Diagnosed last Sept spoke to a gastro consultant once who had no empathy or bedside manner at all. Robert (pbc foundation CEO) was extremely helpful, after speaking with him I asked the GP to refer me to Newcastle for a second opinion, I’am due a fibroscan on the 21st of March, the first one did not work, I’am just wondering if anyone else feels so overwhelmed with the tiredness, itching, joint pain, and all the other things associated with PBC

Elaine x

[DonnaBoll Administrator]

Believe me, you are not alone in feeling like you do. I know some days putting one foot in front of the other was all I could manage for the day. It can come over you in a second - feeling fine just a moment before. There is no way anyone who doesn't experience this 'fatigue' can even imagine how it feels. All the naps in the world won't help. That all too often seems to be what 'friends' suggest.

As far as the itching, it can feel that it has consumed our lives. I know for me I can vividly remember sitting on the side of the bed at night (the worst time for me) rocking back and forth just asking God to make it stop. I am compiling a list of things right now with The PBC Foundation that might help with it. There are medications you can take as well. Did you already see someone who really knows about PBC? They should be aware of some things that could help as well. If you send me a 'chat message' we can talk more about this.

PBC is just hard. I am so sorry you seem to be experiencing so many of it's symptoms. One thing that surely helps the fatigue as well as the joint pain is any form of exercise that you feel you do. I know this may sound impossible but it does help. I have often found just doing some chair yoga or chair exercises (found on utube) to be helpful. Walking is so good for it as well.

I'm so glad to see your post. I know others will have some suggestions and support for you. Just a couple things regarding the itch... don't take hot showers, don't use any soaps that are perfumed or scented in any way ( I used Dial or Baby soap).Y

You are so right about being 'overwhelmed' by it all. I totally understand this as many of us do. Take it one day at a time. Be kind to your self and listen to your body when it needs to rest. I know how hard this can be but your body just needs extra care right now. There will be many conversations about all of this here I'm sure. Thank you again for reaching out here.

[Cumbria7 in reply to DonnaBoll]

Thanks so much for your reply. I am a practice nurse and the fatigue worries me as I’am so scared I will make a mistake. Having sleep apnoea does not help either I was thinking of retiring on ill health but the criteria is so stringent. I sometimes feel like I’am trapped in a bubble and don’t know where to turn because like you said no one understands the level of fatigue you feel unless you have PBC yourself

Take care xx

[DonnaBoll Administrator in reply to Cumbria7]

I can so relate to much of what you're saying. I was an RN for over 40 years, having PBC for almost 20 of it. I worked 12 hour shifts and for the last couple years or so before my transplant I did need to shorten my shifts from 8 hr to 4 hr ones. Sleep apnea was something I had for several years but not really until my 50's or 60's. I finally went to the sleep specialist and had an in home sleep study test. I was having apneic spells up to 20 times an hour. I now use a CPAP for almost the last year or so. Has helped with those tremendously. The fatigue can be unrelenting some days along with so many other things in our lives going on at the same time. Can you shorten your work schedule in any way? Can you rest for any length of time at all during your day? at least sit with your feet up? Not listening to when our bodies need rest can just make the whole situation worse. There is no good answer, I'm afraid. Each of us has to find what works for us. Does family or friends ever really understand? I don't think so.... it's so hard having PBC. Take one day at a time. If you can exercise in any way for any length of time it really does help with the fatigue. Hard to do, I know. I hope we can chat again about this. There is always someone here to listen.

[Cumbria7 in reply to DonnaBoll]

Hi

Just to let you know I have sent a message in the chat x

[Cascade35]

Hello there, I can totally empathise with you on the debilitating fatigue. I was diagnosed a year ago with PBC but put the symptoms down to being menopausal even though I had no hot flushes or anything else. But the PBC diagnosis made so much sense. I get daily fatigue and joint pain. It gets so bad some days that I have very little motivation to do anything. And then I get paranoid at being judged as being lazy. And then you think, I’m potentially going to feel like this for decades. But thankfully I don’t have any itches so that’s my positive!

[Cumbria7 in reply to Cascade35]

Thank you, yes I feel you do get judged because no one understands the debilitating effects of the fatigue associated with pbc. Like you my motivation is low the side effects of this condition are so many but the level of understanding is so low apart from all the support you get from others on this site and the pbc foundation I would feel totally isolated.

Take care xxx

[DonnaBoll Administrator in reply to Cascade35]

It is so hard to deal with this, I know all too well myself. Fatigue is such a common side effect of PBC for so many of us. Some days you can hardly walk... for me it comes over me in a second with no warning at all. We all need to listen to our bodies when that happens and rest if at all possible. We can feel guilty about taking it easy or even napping but we are pushing ourselves and our bodies to a point that we are not doing ourselve any good by doing this. Our bodies work very hard just dealing with this liver disease. When it needs a 'rest' we have to learn to respect that and just do it. We all need to take of ourselves in any way we can. If it means just sitting down and doing nothing then so be it. Knowing we matter enough is such a huge part of taking care of ourselves physically as well as mentally. I hope we can have many more conversations about this.

[Cascade35]

Totally agree. When I saw your post earlier, I could immediately understand. But friends and family say they get it, but when I wake up exhausted or need a Power Nap by 3 pm, I can see the looks and I think they believe I’m lazy. I go to bed at night and think, tomorrow I’m going to do x, y and z but then I wake up the next morning and those plans go out the window.

Take care too x

[DonnaBoll Administrator in reply to Cascade35]

First of all, everything you wrote is something many of us can so relate to. We do 'get it' don't we?! I think we can all find some comfort in that. I really believe that no family member or friend can ever really understand what we experience. They may think they do but they don't. We know we are not lazy. We know it's nothing we can control but believing it when someone gives us 'that look' can be hard to do. I make 'to do' lists almost everynight. I did a fairly long one for today. If you can check off just one small task, then know that the day was a success. If you don't do one thing on that list, make peace with that too. Don't be hard on yourself. Be kind just as you would be to a any friend who is feeling they are lazy. I'll get back to you about anything I check off of my 'to do' list today. 😊

[Cumbria7]

yes totally empathise the people I work with don’t get it either which makes it hard xxx

[CeeCee101]

if you read Dr Jones’ book he talks about the difference between fatigue and tiredness. It’s very informative. I just tell people fatigue is more like trying to walk through Jello where tiredness is just having stayed up late…