I had never in my life heard of exercise intolerance. When I walked one time around my block, the next day I was so fatigued that I couldn't get out of bed. After this happened three different times I contacted my doctor and was told that it was exercise intolerance and to just listen to my body. The problem is that I'm fine during and after the walk, but the next day am out of commission. My numbers have improved with the Urso, so that part is good. I'm just afraid to exercise at all now because I work full time and am afraid I won't be able to make it in to work the next day.
Having PBC itself doesn't worry me. What worries me is the possibility that I won't be able to continue to do my job well because of fatigue. I like my job and need to work. My hubby is disabled and since my diagnosis he has been amazing. I don't vent to him about my work worries and appreciate being able to vent here, as i dont want to worry him if I can help it.
I'm very compliant with my doctor's recommendations, do everything I'm supposed to do and haven't had any alcohol since being diagnosed (my choice).
Any thoughts or suggestions on feeling better? As I mentioned I'm afraid to attempt to exercise at all any more.
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Abigail53
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I met a neurologist, who told me to do excercises, it means slow walk or swimming, the most important is being on fresh air, as we need much more oxigene; tireness is not always the same, sometimes we are stronger, some periods are worse, so sometimes I only sit on a bank. I realised, too, when in better mood, my body is helping me much. Maybe some vitamins? Plus: one year ago I made a 5 month curation with NuSkin's R2 (it containes a chineese super-mushroom) and vitamins, it helped a lot. Don't worry, it won't last like that, but surely strong phisical afforts should be out of our routine Be better!
my hepatologist also told me that it is very important to exercise. However, at the same time she said that we have to listen to our body as the severeness of the fatigue almost changes on a daily basis, but I don't think this has anything to do with the exercises themselves. On the days where I am severly fatigued I only go for very small, leisure walks (15 - 30 min). Otherwise, I try to exercise regular - power walking (almost daily), cycling and to help to retain my muscle strength I use Therabands. They are incredible easy to use. For me it is important to ensure muscles as I do have quite severe spinal osteoporosis. Sometimes, I go to the gym to do weights. My physio tailored an exercise programme for me, considering all my health issues and the fatigue. So far, so good. I find since I started regular exercise, especially on the days where the fatigue isn't that bad, that the fatigue itself has slightly improved. I work 13 hours within the health care setting and so far I had not to miss work, because of fatigue. I do have days so where I just dragg myself through the shifts and by the time I am home I just go to bed and virtually fall into a coma sleep. Don't give up, just try different things and see what works best for you
Collette Thain, who founded the PBC Foundation (they host this site, you can join if not already a member - see links above) gives an excellent account of how she slowly and gradually built up to exercise again. I don't think the fatigue is ever defeated, but it does seem that gently building up exercise tolerance and maintaining it does introduce some control. But she does stress that it is necessary to always listen to the body and not force anything. That's probably a poor paraphrase, so do read what she says. I think she recaps the story in the first part of her blog (again, link to the PBC F.
I think exercise and how you exercise is by personal choice. I am not a big lady at only 5 feet 2 inches and since I started with the itch early 2010 I did lose some weight and since starting on urso Dec 2010 I have found that my weight fluctuates by a few pounds up and downy but I never seem to lose any now nor gain.
I feel for me that if I was to start some regular rigorous exercise regime I'd more than likely drop even more weight. I am usually on the go all day and for me that is by far enough. I can aptly climb a hill without much effort, walk miles and miles, have had manual domestic jobs in the past and I do look pretty well-toned.
I recently changed my views on a lot of exercise as in purposely undertaking rather than in a daily living as I feel I get enough day to day. With the recent death of a tennis player who had a liver condition (PSC not PBC) and went on to develop something that was or wasn't connected but liver-related, given she would have been a very fit and active young woman living as she did didn't appear to have made overly-much difference. On another note I don't think it does good not being a little active though.
Never heard of exercise intolerance. I count myself fortunate that back in 2010 the year I was diagnosed with PBC at aged 46 I did suffer fatigue that year but then at some point the following year it just vanished.
I am pretty active and continue to keep going. I itch at night so sometimes that brings on a feeling of tiredeness later in the day but that is due to broken sleep.
I know when I go on holiday and spend all day walking and being on my feet, usually it is summer in the UK and get hot and sticky at the time, I do tend to start feeling like I am flagging as the holiday progresses but it has been quite some time since I had it hit me the following day now.
Unless you are walking miles and miles in a day I think short walks are quite beneficial to anyone's health regardless of PBC or not. Any days that you get free, do a bit of both with plenty of relaxing (I eat my lunch and read my book awhile, certain stops you from getting up following eating and carrying on), try and not let it get to you as I do think the stress thinking about certain things can make you feel all the worse. Eating well can also add to a feeling of well being I find.
I am 50 now and doing well with PBC but I know for me I would rather take gentle long walks as opposed to doing a more strenunous exercise. I know I am up and down stairs a lot and I do think that helps somewhat. I know when I was recently away on a weekend's holiday to Yorkshire - Scarborough - where there are lots of steps and steep inclines, I can do them without feeling breathless or flagging.
I've been diagnosed for 6 years, now 36, and due to fatigue being my worst symptom and my reaction to exercise, my specialist said not to do anything too strenuous. He said swimming is fine, and I try to do yoga 2/3 times per week. I used to go dancing every week, but find I can't do it anymore as I am wiped out afterwards, so save it for special occasions when I have a couple of days off work afterwards.
I still manage to work full time, but am dragging myself around and feeling the need for a stick on really bad days. Like you, my worst fear is not being able to work, I live alone and financially could not support myself without working. I just take each day as it comes and try to exercise a little when I am able to. My PBC consultant said that if I did too much it would make me feel worse, so I just do what I can when I can. It's very frustrating, but I'm still able to work and look after myself, so will keep going as long as I can! Hope you re managing! Xx
Hi! I know PBC effects everyone differently. I guess we all do what we can to make us feel good and that helps our bodies. I do not have a lot of symptoms so I count myself very lucky so far. I do not have a working thyroid so I have been on meds for that since I was 29 yrs. old. I am now 65 yrs. old. A lot of thyroid symptoms are similar to PBS. I guess when I am down and tired I don't know if it is my thyroid or my PBS! The older I get the more exciting life gets! What's next?
Good on you young lady, I was diagnosed PBC in Jan 2011, ended up having a liver transplant in June 2013. Also I take a tablet for a thyroid problem. Having been ill for years I feel good. Come'on life I'm ready for anything you can throw at me....lol
Good on you brummie hope all keeps going well for you
I believe in mind body control. Although you may feel exhausted I think the shock of diagnosed with PBC can make one depressed and tired. There are natural supplements to boost your energy. Spirulina. Is safe and only beneficial
I agree that I have some depression going on, in addition to the exhaustion, brain fog, etc. I was on an anti-depressant even before being diagnosed with PBC. I do take vitamins. Oh, and I just found out last week that I have a cataract. I've read that those with auto-immune conditions tend to be prone to cataracts, for some reason. Anyway, thanks a lot for replying.
Hi, I have never been one to go to gyms or exercise as my job gave me all the exercise I needed. After my liver transplant I was told walking and cycling are good for me. Yeah OK!, walking no problem but cycling at 65, I think not. You are right though your body will tell you when enough is enough. Take care..
Brummi, You are not old, I'm 61 and do cycling, sometimes very short distance, but not always. The same as walks, maybe some stops, but sometimes for some joints it's better than walk. Be well, spring is here
Hi, I am 66 , at this moment in time I am exspecting the words you are back on the waiting list as I have a few problems. As for exercise I work full time in a very physical job. I live on the edge of a large country park and love long walks . I stay positive and love life. Take care.
Be well Brummi, I hope You will not have to wait too long. Spring is here, I wish some of YOur problems be solved. Exercise: today I ran after a bus 10 steps, and I was ready. I walked a lot with my grandchild (met her after 8 months) who makes her first steps. These days, of course I have much less complains. Be better!
Hi Abigail - I am exactly like you, no feeling of overdoing it at the time so find it very hard to judge. I have recently got B12 injections which I feel has helped maybe worth getting your levels checked
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Be better!
I find since I started regular exercise, especially on the days where the fatigue isn't that bad, that the fatigue itself has slightly improved. I work 13 hours within the health care setting and so far I had not to miss work, because of fatigue. I do have days so where I just dragg myself through the shifts and by the time I am home I just go to bed and virtually fall into a coma sleep. Don't give up, just try different things and see what works best for you 
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