Not feeling to good: Hello , I wonder if any... - PBC Foundation

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Not feeling to good

246810
246810

Hello , I wonder if any one feels like there's no energy left . One day I can do things like house garden or pop out to shops with my Daugther Then the next day can't do much without feeling very tired , I sleep about 11 hours at night , I don't sleep in the day , but I have to sit most of the day on the days I feel rubbish , the feeling I get is a strong draining feeling and it scares me . Even walking from one room to another is slow and feel like I could faint . Any one feel like this ?

Thank you for reading

14 Replies
oldestnewest

I know what your talking about, the fatigue is unforgiving. I can go strong for few days, then I hit a wall, I thinking it’s getting better though. We walk everyday 3-4 miles, shop, errands, try to squeeze my painting in here, I think I push it right to the limit then crash most of the time. I need at least 8-9hrs sleep, 11 sounds better. The fatigue and itch #1 complaints. Yoga, exercise and good nutrition is BIG with PBC

246810
246810
in reply to SunnyXXOO

Thank you for replying , last night when I wrote the post I was feeling so upset with it all. One day I think I'm coming to terms with it all and then when I have there's energy lows I feel drained and tearful . The other day I did loads in the garden while it was a little cooler. Then yesterday , all I did was peg some washing out and some dishes. I've been diagnosed for 10 months now, and you would think by now I would be ok with it all . For a few months I was poorly with various infections . But since May I've been ok . Thank you for listening

Hidden
Hidden

Firstly if your feeling like you could faint, I would suggest getting checked out by your doctor there could be something else going on other than the fatigue from pbc.

I suffer fatigue like a draining of all energy and need to sit down or fall down, I used to say it was my constant companion , however I read many times about exercise. I reluctantly gave it a try, 5 minutes on the exercise bike was all I could manage to start with but now a year on. I can now say most days I’am okay, where my day was over by 2 pm, I’am now walking the dog at 5pm. If I have a busy few days then I do pay for it, it’s about pacing myself and learning when to factor in those rest breaks.

It may sound daft but I give myself permission to do nothing and take a break, then it feels like it was my choice and not this disease otherwise I would be getting depressed and that it’s self brings another fatigue. Being someone who was always on the go from morning till night you’d be surprised how hard that was , but it was worth the effort to get back some kind of life. So take those rest breaks and remember even those without pbc have days where they feel burned out.

mjk98
mjk98
in reply to Hidden

I am fatigue most of the time but I think that's the combination of the PBC with the overlap of AIH my body feels tired but I was practically up the entire night I couldn't sleep... right now I'm doing a combo of 6MP drug and prednisone and I will say that my body feels so much better because I have so much muscle ache all the time on the prednisone I don't but then I am Moody irritable hungry I must have gained in 3 weeks over 10 lb just wanting to eat constantly in one way it helps the other way it hurts I'm supposed to be taking the Urso 2000mg but I'm not cuz it makes me nauseous so I get blood taking again on Monday to see if my numbers went down if they don't know how to tell the doctor I didn't take the Urso

246810
246810
in reply to Hidden

Thank you for your reply , and all your good advise . I know what you mean about being reluctant about doing exercise , I feel if I do too much at the moment I'll just collapse in a heap . I'm doing gardening when it's cool enough, I've always done the garden. I did loads the other day , just cutting back and sweeping . Thank you again for listening

246810
246810
in reply to 246810

I hope you can find some tablets to help you , you should tell your doctor you have stoped taking uroso. Take care

246810
246810
in reply to Hidden

Thank you for your advice , I have just sent my reply to to you to the wrong person , so she will think what's she going on about !!!

I've been doing the garden when it's been cool enough. And jobs around the house. I know what you men about exercise , I feel I'm going to collapse in a heap if I do to much . Diet I struggle with as I have a bad tummy .IBS , I don't eat a thing with wheat , which I think is good for us . If I eat too much veggies my tummy will up set. I tend to eat lots of beetroot , rice salad , potatoes, and loads of fresh lemon water. Thank you again for listening

Hidden
Hidden
in reply to 246810

I had/have iBS to, i was luck enough to get a referral to a dietitian and work with her through the low Fodmap diet to eliminate the foods that were causing me the symptoms and now it’s pretty much under control. For me it was wheat( not specifically the gluten) lactose and sorbitol.

246810
246810
in reply to Hidden

I am trying very hard to eat better too , no wheat . I eat lots of rice and potatoes , no fatty foods , can't seem to kick the chocolate !!! Keep well and thankyou again for reply x

Hello 246810, I also know what you're talking about - it is a fatigue that

is only recognisable for me from when I was pregnant and living in the extreme

heat & humidity of the Far East! I live in SW France now and it's also very hot

here and have this PBC tiredness is awful. I am finding that since cutting out

sugar and beige carbs for most of the time, + keeping up exercise, particularly

a bit of gardening most days, is helping a great deal. For a year or more I

felt powerless to deal with the various symptoms, but now I've taken charge

of my diet and a few other things, this has helped a lot. And I do a lot more

sitting, resting and enjoying the quietness of the countryside.

Good Luck.

PIN44

246810
246810
in reply to Pin44

Hello thank you for your reply , I'm trying to do some gardening every day too , I do love being out side , but like you the heat is to much , but enjoying the warm evenings most . It's just hard to except the tiredness isn't it . Keep well

Thank you for the original post.

Thanks, also, to those replying telling us their own success stories re exercise and diet.

We, at the PBC Foundation, advocate exercise and life choices as the best way to combat fatigue. We host workshops with this specifically in mind. We have heard ao many success stories if patients who have transformed their lives by building up their activity, in a way that works for them.

You can contact us directly for help, or get some info from our website (including patient experience videos).

Yours,

Robert.

Hello Robert , a while ago you sent some contacts to phone , can't seem to find them . Can I also have contacts for these workshops too

Thank you. Jane

PBCRobert
PBCRobert
in reply to 246810

Have sent you a message.

Robert.

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