Hi I am VMcnK and have had PBC for a while. With no side effects thank goodness yet. Recently, however, I have had the ridiculous (in my view!) tiredness. If I swim my usual twenty five lengths I can be wiped out the next day.
If I drive a couple of hundred miles in one day or - what some 'normal' people call overwork,( but I have never had a problem with) then It can take a day to recover. DESPITE THERE BEING NO ISSUE DOING THE ACTUAL ACTIVITY. I only realise it the next day.
It does not always happen but is becoming more of a feature to my lifestyle!
My GP can find no reason for the tiredness. I am also putting on weight even though I am careful about my diet and eat all the right things. I don't drink alcohol Or smoke.
Am I to assume the PBC is beginning to affect me? I should see the consultant in the next few weeks so might be able to ask them but the allotted ten minutes does not give a lot of time for conversation!
Thanks
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VMcnK
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Sounds like PBC fatigue to me. I travel three hours to see my heptologist & cannot make the drive on my own. The last time I done it alone was the first time, I was in bed for close to a week after. It's truly debilitating at times. "Normal" people don't understand & I've even heard of doctors trying to blame it on anything but PBC. Unfortunately there truly isn't anything much we can do about it.
After reading your questions and seeing some of the replies I think we are in the same boat. I was diagnosed last February (from a non related doctor visit) and until then thought my lack of energy was aging. I am 67 and have always been very active: running an hour a day or spinning classes or swimming for an hour. There were times when I would question why do I feel so exhausted and gave it up to aging. I'm still not sure if it's aging or PBC. I have found I can't do as much as I used to without being tired the rest of the day. Naps do help. I guess it is something we have to deal with whether it is aging or PBC. We have to listen to our bodies and be thankful that we can do anything.
I have Pbc/Aih. And it had got that bad tiredness. That my husband had ro go into the supermarket whilst i waited in the car. I was tierd and short tempered.
I was very low in vitamin D which they dont always test. Ive only had one pill and feel so different. Good luck i hope you find help soon.
I would ask for a full vit and mineral check, just to be sure . From what people have said in the past, it might help to break up the bouts of exercise, eg, do 2 lots of 13 miles? Also, you don't say how old you are, but as I found ([once was] hillwalker, mountaineer, rock climber, and gym bunny who used to cycle everywhere) it just becomes harder as we get older, especially as the menopause approaches [apologies if you are nowhere near ... but it can be hard to tell what is PBC and what isn't]. But try easing back if you feel a bit 'off' and then don't push things too far when you feel good.
Thanks I am much older than you and have always pushed the boundaries but prob time to move the goal posts, could not play hockey now!! Yes it is difficult to decide what is anno Domini and what is not.
i take it your gp has done fullthyroid checks coz your symptons matchunder actjve thyroid i also have pbc and suffer extreme tirexnesikeuafter event but becoz ialso have fibromyalgia its difficult to know whats getting at me all the best hope u get sorted
Further to comments already made. Thyroid and pbc can go hand in hand. Both auto immune. No harm at all in checking. If it is a thyroid issue that can be treated.
I go through the exact same thing I started swimming about 3 weeks ago and the same thing happend. The next day I was in bed all day with so much and fatigue (fatigue is an under statement, it feels more than that. Like your so completely weighed down it hurts)
Whenever we travel anywhere I feel like poo. We usually go a day early knowing that next day I will be useless. Thankfully my husband is amazing and does whatever it takes to help me.
I'm so sorry you are going through this. I was taking some supplements that were helping some but my liver doc has taken me off everything but my prescribed medications.
Warm/hot baths do help. I take a lot. Listen to your body. If it needs rest, rest.
It has been incredibly hard for me. I can't even make plans for anything anynore because I don't know how I will feel that day....keep your chin up. I keep reminding myslef, it could be worse....
Also, the main symptom of PBC is fatigue. My doctor (the FIRST doctor to EVER say this) said that is the main symptom of PBC and its awful. It will feel like nothing you've ever felt before and someone who doesn't have PBC just won't understand what you mean when you say "I'm so tired it hurts "
This is a perfect description of how my pbc fatigue is it is by far my worst symptom,I have had it right from the start of my illness even when my liver was quite good and it is something I battle with every hour of every day.
Fatigue is the worst symptom of PBC for me. I recognise everything you've described. I've attached an article from the BMJ that was sent to me by my GP. It sums up the fatigue perfectly. Take care x
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I started swimming about 3 weeks ago and the same thing happend. The next day I was in bed all day with so much and fatigue (fatigue is an under statement, it feels more than that. Like your so completely weighed down it hurts)
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