I have noticed since being diagnosed with PBC that I have much less patience and am much more irritable. Has anyone else experienced this?
My fatigue is also so bad that some days I feel like I do not even have the energy to fill my lungs with air. Not trying to be dramatic but this is how I really feel. Are there any ways to deal with this?
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happy0507
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I was feeling that way as well. I had to remove toxic family members from my life 100%. I’m a lot better. It’s unfortunate that I removed them years ago and let them back in. This time they are gone forever.
I think the worry about knowing you have pbc can make you less patient. Whereas before you might have smoothed things over, you've got more important things to concern you, ie your health.
Hi happy0507 I was dx with PBC in May last yr 😞 I totally understand where your coming from 😞 the fatigue is a nightmare . I have a beautiful grandson who is 5 and I no longer feel able to play and do all the things I could 😢 unless your in it no one can understand 😞 have a look at some Facebook groups I belong to 2 and they are really good for support on bad days ☺️ Keep going and make the most of the good days ☺️
I m suffering from Pbc with AIH since 2 years. I have taken the medicine BIOCOL 300. recently my doctor has advised to take steroids. Is it good or what is the side effect of this. Pl anyone can tell me the experience of steroid.
I'm sorry to hear that you are having to go through this and need help. I'm afraid it's not my area, and I don't have any answers, but there are plenty of people here on the 'PBC Foundation' site, who will be able to help.
However, by mistake you have posted your question in the middle of someone else's discussion thread (See 'happy0507's query at the top of the page).
You need to make your own question to post on the question site, and then you will get a string of answers from 'PBC' people who are knowledgeable about your issues. Go back to the 'Health Unlocked' site to read the instructions about posting a question, or just contact the 'PBC Foundation' website (link at top of this page) to get advice or even talk to one of their trained advisors - email and phone numbers are on the site, for this.
I can really identify with this. Never quite sure if it is PBC or the added pressure of knowing I have it on top of other pressures in life just tipping me over the edge. So irritable especially at work. Moving office to see if that will help. Trying an antidepressant as depression can manifest itself this way too and have been depressed in the past. Knowing you have PBC and the particular fatigue associated makes life such a struggle that I feel like an elastic band that has been stretched to its maximum but still trying to power on
I know what you mean. I get annoyed at myself for feeling irritable. I’ve always been a patient person but I find I have to work at it sometimes. I just don’t have the energy for dramas. Don’t know whether to blame pbc or I’m just getting crabbit.
I am not in a the position where I have a difficult friends or family luckily..Although some can be not so sympathetic....I do get tired sometimes and can flare up. I am getting forgetful too. I have cirhossis now and that has made me more so....also frustrated over things..ie need a tooth taken out..dentist needs permission because of platelets being low because I had a bleed from stomach 18 months ago..then have to wait and see consultant about it and then have tooth removed and all along it is aching..not too bad but still....also have been told I have stage 1 ascites which is water in the stomach and that means I am now in stage 2 of cirhossis and have to cut liquid and salt right down..and take a diuretic...before the cirhossis I was lucky as had few symptoms but now very real. Friends sort of understand and thats enough...my partner is excellent so I am lucky, but it does stop you in your tracts when people talk about what they will in years to come and I know I will not be there...will be over the age for transplant.
I will add that I had the PBC for 22 years without cirrhosis.
I too have bouts of irritability along with fatigue! I think it's a combination of knowing you have PBC and experiencing the symptoms. I've worked to change the irritability, to erase it with thoughts of gratitude ... I'm happy that it was caught in time to slow its' progression ... I'm blessed to have the supportive and beautiful family that I have ... I'm grateful for each day ... I now know what others are feeling who have a disease, I can empathize ... Today can be a beautiful day... It's not easy to reframe the negative thoughts, those are the automatic ones, but it can be liberating. Best wishes!
I am a lot less patient and irritable for no good reason a lot of the time. I used to be a very patient tolerant person but I think it’s just because I’m so tired all the time now and feel generally unwell a lot of the time. I try and have a rest everyday and make sure I have early nights. I also have cut back on slot of things just so I’m not running from one thing to another. I have also started saving up for a back massage which I think will help
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