Lately I’ve been feeling very tired every mid afternoon more so than I ever have I’m wondering is this the PBC and just a natural progression. I was diagnosed 20 months ago with no liver damage just raised LFTs and have been on Urso ever since I take one capsule in the morning and 2 in the evening. I also changed my diet for 2 years I’ve had no alcohol ( only light social drinker before) and no dairy or gluten and very limited sugar or processed foods. I did the ‘Myers Way’ of eating for some time but have added other things in now as socially it became too difficult. I’m challenged as I have a big creative work project on and it his hard keeping doing as much as I need to when I’m fatigued. I haven’t shared this challenge with my colleagues/partners as we are contracted by investors to finish within a particular time frame and to a budget that will blow out if it takes longer. What do others do when tired? I’ve had a massage and Accupuncture and wonder if more exercise would help or would that be too much with the tiredness? My work is not physical except mildly so at times. Suggestions appreciated.
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It is hard to pinpoint fatigue. Fatigue is a known symptom of pbc though it not found to be correlated with pbc progression.
Stress from the job can also make you tired. I find that though the job might not be physically demanding, juggling and multitasking while deadlines are pending can make a person tired. Additionally this impacts the quality of your sleep which deteriorates and increases the tiredness.
Exercise is a proven technique to lessen fatigue. It might sound contradicting but research supports this.
I feel more energetic when I have an exercise routine. You can try less strenuous activity each morning, like walking or yoga. See if that helps...test for 2-3 weeks & jot down how you feel so you can make comparisons on if exercise helped.
I work out 30 minutes a day in the morning & it makes me feel better.
Thanks for your reply Ninjagirlwebb. I think that what you mentioned about a diary makes lots of sense - keeping track of exercise, food, sleep and how my energy is each day. Another thing to do but it would track what works and what doesn't. And working out 30 minutes a day would be a good thing, in the morning. I was doing yoga before and have dropped that off. So actually this in part could be the reason behind my fatigue (apart from PBC). I was thinking of joining a gym ( I haven't usually been a gym person though did lift for life, a weights program a few years ago) and may also but as you say 2 to 3 weeks of half an hour each morning would be a good start.
I was not working out since covid kept us isolated & I just felt unmotivated. That was in March.
Had a virtual visit with my hepatologist and I was telling him all of this late July. He suggested, just go on youtube & find 30 minute exercise videos to do every day. Told me, it is that easy. So in Aug, I started making the commitment.
A diary is also helpful for anything you might want to share with your doctor when see them.
I used to dislike working out at home since I usually go to the gym or park. But today’s circumstances dictate me to adapt.
Anyway, I hope you feel better...just start slow and do baby steps. It will alleviate your work stress as well.
On PBC International Day Professor David Jones discussed fatigue. The recording of this hour long session can be found on the PBC Foundation facebook page. It was a very interesting presentation. If you scroll down you will come across it. It is a bit of a way down their postings.
I listened to the talk thank you. Amazing I thought there was a link between severity of the disease and there isn't. I was/am very surprised. So I guess I will have to take ownership and manage my tiredness as best I can. And his book sounds interesting for information for me (and doctors and family). Also suggestion of taking some supplements is interesting. He talked of a link between lactic acid build up and tiredness - my chinese medicine practitioner mentioned lactic acid build up the other day. Much to think about.
The advice for people with PBC is to get as much as you can done in the AM so you can rest in the PM, easier said than done I know.
Might be worth exploring other things as to why you are feeling fatigued, just in case there is treatment you need that you are missing. I spoke to my consultant this morning, he said it’s easy to blame fatigue on PBC when there may be another cause, for me it’s anaemia. Might be worth exploring other reasons and making sure all your vitamin/mineral levels are optimal x
Thank you for your reply. Yes mornings are better, and perhaps I can plan to work that way. That is a good idea to perhaps get tests done to explore if I am lacking in something else that my body needs to help my energy levels.
I do the same as Rosemadder9. Mornings are my favourite parts of the days. If it's possible I have a snap, or relax a bit after lunch or early afternoon. Then I feel good enough to start my work again. I usually do not eat breakfast, just tea and coffee and an apple at about 9-10. I eat a normal lunch between 12-2, a light dinner, a youghurt with cereals or some fruits at about 6. If I eat more I fell worse but I am quite energetic. In the afternoon I try to walk at least 45 minutes. When I don't have time for it or the weather is bad I do some excersise, about 30 minutes in the evening.
As for food, I don't eat red meat, sugar, greezy/fatty/smoked things, spicy dishes, I don't drinMedication: Urso 250 mg 3X2 , Imuran 50 (azatioprin) 1X2+ D viamin( 2000/day), kalciumn (1250/day, magnezium (400/day)k alcohol at all.
That way I can manage the weekdays. At weekends I relax a lot, sometimes I sleep 12-14 hours, read books, watch TV or just look out of my head. Of course I needed a supportive family to be able to do that. I've been doing that since 1996.... I think, it works.
Unfortunately it is one of the PBC symptoms...mine got progressively worse, thought it was “single mom syndrome” until got diagnosed with PBC. I now take Modafinil in the morning and again in the afternoon if needed. Just rest up when your body needs it and learn to pace yourself. Good luck!
Thank you I never heard the term "single mom syndrome" but tiredness was the symptom that led to my diagnosis. I don't know Modafinil and may explore that if exercising in the morning as recommended by ninjagirl doesn't work after a few weeks. And I guess I will have to rest more.
There have been times when I felt like a juggling zombie.
Caring for children, elderly relatives , helping to run a creative business.
Things have eased up a lot now, although sometimes I am still desperately tired.
We all find our own way to fight on -
But two things I have found helped were:
Try and take a 'power rest' - if possible between 14.00 and 15.00 - just 15 minutes can help.
Just take time out - relax, let your mind roll on.
The other - I was so fortunate to find - a small pilates group which had a spiritual ethos - and an amazing, inspiring teacher. I found again life within my run down body and stressed out mind.
Hello magria thank you for your thoughtful reply - yes perhaps I should do my best to structure a power nap into my day. That and I'm going to exercise every morning. Listening to Professor David Jones was great he talked about the importance of exercise and also there may be a link between lactic acid build up (as a result of the PBC) and tiredness there is research on this planned or happening. At least from listening to him and all the supportive people on this site, I know it is not just me, and not necessarily a progression of PBC, just something challenging that we with PBC have to live with.
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