Newly diagnosed, had private consultation and now waiting for NHS appointment .
The problem is other than going to the hospital and my son driving me to London to see new grandchild , I have been house bound for 5 weeks feeling weak and nauseous, scared of going out on my own and collapsing in a heap !!!
The diagnosis I have taken on board, listened to the experts but I'm not sure if this is a normal pattern for pbc ...I am quite literally off my feet , trying to be pro active but 5 weeks , is this normal ?
My ultra sound scan normal, I'm trying hard to eat and get in with life but it's like my body is taking no notice
Love to you all xx
Written by
Cathycomehome
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Did you have any of these symptoms before diagnosis? Maybe the stress of the entire situation is causing your body to react this way. Stress makes it worse.
I was very worried when I was first diagnosed & my hepatologist told me I needed to relax & not worry because stress makes autoimmune situations worst.
He said, let me worry about you. So don’t worry.
So after a while, I just listened to him. It puts my mind at ease because I know he is looking after me. Any time I need him, he is only an email or phone call away.
Many thanks for your reply .....you are sooo right .....I need to deal with the stress of knowing my diagnosis and life change ....I thought I was dealing well with this and the bed ridden days were all physical symptoms ...but now I'm not so sure !!!! ?
Now you’ve had one consultant visit and some test results, is it worth going back to the GP, just in case something else is causing some of the symptoms. For instance could you be anaemic perhaps, or the stress maybe playing a part and these things can be treated.
I’am pleased you managed to get to see your new grand daughter that must have lightened your heart.
The Pbc foundation who host this site is a good place to start if it’s stress from the diagnosis adding to your symptoms. I know when I was diagnosed I was in a bad place thinking my life was over, but there information and no nonsense approach made me realise I was okay and that I was going to be okay. Do contact them and have a chat if you haven’t already.
I don’t seem to get flares like some do, I have fatigue as a constant companion and for a while it was made worse by stress, but slowly with exercise and a positive attitude it’s now not bad enough to stop me doing what I want to do. I just need to learn to pace myself. I’ve been diagnosed 10 years now, and I’am still okay and soon to have another little grand son.
Thanks for your reply, it is refreshing to know that you are now in a positive place , which is where I aim to be ...I think my body has taken a battering both physically and mentally and each day I'm trying to do something to help it along .....
Today i hope to,get in my car and go for a swim ......
Nothing is normal anymore for us and that’s ok. My journey so far has been awful but I feel as though I’m finally getting back on my feet.
I was diagnosed in June and put on URSO immediately. I’m a stage 0/1 so we caught it early thank goodness. At the end of July I was rushed to the hospital with back and neck pain, crazy headache, vomiting and dizziness. ER Dr had no clue what happened, it was a sudden onset at the beginning of my day. I haven’t been medically cleared to go to work yet and I’m scared as well. I’m 39 with an active family - I need my life back.
My GP thinks it’s side effects of URSO. My hepatologist says “his patients don’t have side effects”. So helpful.
As many people on this wonderful forum have said - be your own advocate. I did some research on the medication and the disease and with a strict diet, rest and low stress I can finally have a week straight of feeling pretty good. Not “normal” but my new normal. If I get run down my hips hurt, I have to nap all day and feel just awful. I was stressed out due to the death of a loved one and I was having a hard time walking from back and joint pain. It came out of nowhere a day before the funeral and two days later it woke up and I felt great. No explanation.
I am convinced that the stress of the diagnosis and the shock of having to change my whole identity, lifestyle and diet has sent me into this tailspin.
On the advice of my GP I have started to see a trauma counselor to pull myself out of a slight degree of depression. She has turned everything around for me and in the last 6 weeks I’ve seen her I am starting to feel pretty good. I have started a diary to record sleep, food, when I leave the house and for how long - stuff like that. I have a good idea of what my limits and triggers are.
Having said all that - it could be medication, PBC and stress. Who knows. One day at a time and don’t stress out about stressing out. It’s a vicious cycle.
Thank you for describing your journey ....I'm learning so much from you kind souls ....no journey is the same but we come together with this condition to conquer , cope and live with it ......
I have had family stress, my ex partners funeral , my aged parents ,new grandchild etc etc which I think has brought this all to the fore ...I'm still waiting for the Urso !!!!
My ultrasound is always normal. I've had 5 over the past 3 years that I've had PBC. But my MRE showed fibrosis last year. I had a score of 3.14 kpa. The Ultrasound didnt pick that up.
A Fibroscan, or a Magnetic Resonance Elastography (MRE) gives a far more accurate reading of your liver. Ask your doctor to request either of those for you.
One of the main symptoms of PBC is fatigue. Not everyone gets it just like the itching. Both of those is different in everyone. Some have mild problems with them and others have severe experiences with them.
I started to have fatigue and basically just sat all day. No desire to go anywhere. I attributed it to PBC. But then I had a sleep study done. It showed I stopped breathing 22 times in an hour. I was fitted for a CPAP machine and have been using it for 2 1/2 months. I have to tell you, I feel much better. I still have slight fatigue but, I definitely have more energy to do things I had stopped doing. Like making dinner, or going shopping, having friends over etc.
Sleep apnea may not be contributing to your problem but, it was for me. If you are able too, have it checked out.
As others have said- you "could" have something else going on besides the recent PBC diagnosis.. BUT it seems as it has hit you so "suddenly" and coincidental to your diagnosis etc.
I can say from my own experience- that it knocked me for a loop... it took a good 6 months adjusting my head/mental state... I had just retired- and had been complaining of fatigue- but we thought it was stress of winding down business and handing off my responsibilities.. Well BAM.. diagnosis--- OH... that explains the fatigue.. DUH..
And.. and.. 3 years in.. I can say that intense times of stress really really effect me much much more than they used to- I feel it physically. And science shows us that stress is a real kicker for Autoimmune diseases. Lately lots going on in my personal life- loss.. grief.. ugh... and I find it takes a toll on me physically as well as mentally.
I've been hiding out at home.. not connecting as much and just falling in to a hole.
I'm working on my stress reduction and getting back to my connections and just being aware... Doing intentional self-care.. Forcing myself to walk everyday for excercise--it REALLY does help.
I hope you get yourself out to swim... accomplish a few things each day- build on it.
AND... and.... truly-- you will get on URSO and odds are in your favor-- it will slow progression down....
Right now your head is spinning with all you describe-- that's a lot going on. Be kind and gentle to yourself.. And you WILL get back in the groove. you WILL.
Also, it did help me greatly at 65 to talk to a counselor for awhile- about my fears and
limits and worries with getting older and the diagnosis etc.. I live alone.. and it was great to have this resource- helped me learn to manage better and to work with anxiety of it all.
Glad you reached out here-- do whatever you need to do-- for yourself to feel better.. xoxo
Thank you yet again Eileen, you don't realise how much comfort this forum is giving me .....I live on my own, so the problems are not shared on a daily basis ....I am trying to avoid burdening my children, my parents , my grandchildren and my friends until I can get to grip with this condition .
The weakness in my legs after a short walk is scary , the feelings of nausea embarrassing.......I do believe the way these symptoms have come on continuously maybe down to stress , even though I'm trying to learn and accept my diagnosis ....
Hi Cathy - the first thing I was told was:you will die WITH PBC, NOT FROM IT!!!
Keep that in mind. My worse symptoms are hip pain (only left side) and joint pain. Is it from Urso? Is it the disease? Who knows. It’s so hard, but please don’t stress out over this. Yes, it stinks, but you learn to live with it. If I have a day where I just can’t get out of bed (it happens maybe once every few months) - I sleep for 24 hours, then make myself get up and moving. We’re all in this together- go on walks, eat healthy ( I try, not always successful) and live your life!!!
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Time for the gray hair transition????
New diagnosis of PBC 15th Feb. Please tell me this is normal to feel so down, angry, upset and why me, I feel so alone.
Itching with clear ultrasound and bloodwork
First appointment tomorrow 
