Hi all, Does anybody get flu like symptoms ... - PBC Foundation
Hi all, Does anybody get flu like symptoms with PBC? . I seem to get this a lot my bones ache and i'm wiped out for the day. Thanks..
Hi I get these symptoms especially the bone pain. I was diagnosed with PBC 2 years ago & I've tried every painkiller with little or no effect. Also the exhaustion is difficult to manage. I joined a gym and this seems to help strangely enough. If I'm in pain & exhausted doing nothing, I may as well do something to try to improve my overall fitness level.
The other issue is weight gain. No matter what I do, diet, exercise, I can't get my weight down. Any advice anyone?
Hi, I get the same symptoms, aches and pain in joints and muscles, ridiculously tired and feeling run down all the time. My consultant said not to do much exercise, swimming is ok, but I struggle to go as work wipes me out at the min. Trying to do a bit of yoga most days, but that us also getting difficult. I take painkillers most days and it does elieviate the pain for a bit. I've been diagnosed about 5 years now and am managing to work full time, but have changed jobs so fewer hours and less stress. I just try to manage my life, resting when I need to. Luckily my friends are amazingly supportive and I'm trying to be less OCD about housework etc! 
it just gets left at the min! I have been able to loose 5.5 stone since diagnosed, so less pressure on my joints etc. did slimming world and wasn't very difficult luckily, but I did think that if feel a lot better and that hasn't happened! So I wouldn't worry too much about weight! More important to feel good in yourself my symptoms do get better some times and I get very excited when I have a few painkiller free days...small things. Hope your not feeling too bad xx
Hi just read your posts and thoughts I'd comment.Today I actually sat and wept uncontrollably,I feel exactly as you have described.My bones ache,my body aches I'm completely exhausted beyond belief but most of all the pain in my arms & hands is debilitating,I can't even lift the kettle :((((....I'm working full time & I'm single mum to 3 teenagers & I'm finding it really hard to cope working,running a home and being mum :((...sorry feeling very frustrated and low.This illness is just awful.
Hi hope your feeling better today I cried a lot in the past few days too. But I think im in for a better day today thank god!!! Take care x
Yes, feel that way a lot. I have a lot of ache and pains, and fatigue.
Yip. I feel the same. Luckily dont have the severe itch though. Re the weight I was told not to worry about losing weight. It appears some people lose weight some put it on. (I am the latter). What frustrates me more is that I often feel like Im dying inside but people think I look well! 
Hi about other people not seeing it, that's so frustrating. If you say your tired they start talking about how tired they are........not the same is it? I try to pace myself but when unexpected family demands crop up I have no choice than to attend to them. This pushes my stamina over the edge and I end up ill for days sometimes weeks. Take care x
Hi I have "wiped spells" from time to time. I used to fight it but I've given in now. I just announce I'm having a bad spell and sleep and rest as much as life will allow. It usually lasts about 5 days then I pick up again. I say to family just imagine I've got flu because that's what it feels like. I really HATE PBC!
Thanks to you all for your response I now understand that this comes with PBC im so sorry to hear about the problems it has caused you all. I think im gonna have a good day today I hope you all do too take care everyone x
Hi all, it's reassuring, in a strange way, that others have these symptoms too. I was diagnosed with PBC last year after attending the GP every few months with flu like symptoms! I still get them now, and they can last anything from 48 hours to a couple of weeks. I had further blood tests as Dr thought it might be something else, but all came back negative, so I put it down to PBC. I work 4 days a week, but is a struggle sometimes and I agree with others, very frustrating when people go on about how tired they are, it is so different to being "just tired." Take care of your selves, glad we have this forum to share our thoughts and frustrations. Thank you.
Gosh, I, too have the tiredness which seems to be taking over my life and I agree that it is so darn hard with looking after a family and working fulltime. I feel helpless, am easily irritated and fly off the handle. I have constant mood changes and seem to be spouting nonsense to those that are closest. The itching drives me crazy as I scratch myself to death, especially at night and even when I'm asleep (hubby confirmed). Since June 2013, I too have struggled with simple tasks; tasks such as: lifting a cup, turning a door handle, turning a key, using the gear stick and steering when driving, standing on an uneven surface, carrying a bag, writing, turning the taps on/off, in fact anything that involves strength and the use of my muscles as they have all but disappeared, Im just skin and bones. I used to be a plump 5ft 1, size 14/16 and now size 8 is too big for me ;-/. I had a test today which confirmed that my muscle mass has depleted and it's an indication of the progression of the disease. At least I'm not alone and have you guys to share my ups and downs with plus a bonus as it's with people who really understand what it means when I say I'm tired xxx Luv n hugs everyone
Wish we could all have a "GROUP HUG" because each and everyone of us would know exactly how the other felt.Tell me this one does anyone get numbness down one side of face,last few days I feel as if Iv been to the dentist,even my lips are numb,it's weird...Was at docs today and she had a student in with her,he had never heard of PBC,I thought yip we definitely on our own here.....thinking of you all x
Universal 44, I've also had the numb lips at times. I had an occasion where I was having some hyperventilating. I was diagnosed last Feb. with Meniere's disease, and it causes anxiety. I read that it can change the blood gases oxygen and carbon dioxide. On one occasion I went to the ER, with the a crazy feeling of a rush coming over and over my body, and sure enough on a blood draw, they found that my carbon dioxide was too low.
Hi All, I too get the terrible aches and bone pain. Been down these last few day's feeling like I want to cry all the time. Terrible back pain, going to see if doc can give me anything for it. Going to visit my daughter in the USA in 2 weeks time, going while i still can, but dreading the flight. Sending loads of Hugs and luv to you all.xxxx
Hi Fernleard , I was diagnosed in 2009 with PBC but actually had it for a year before we think as my primary doctor noticed liver enzymes elevated but decided to watch them for a year before sending me to specialist anyway my main complaint was i felt so tired at times that i felt i couldn't even take my next breathe after test's and then liver biopsy i got news it was for sure PBC stage 1 so i was put on Urso and it worked great for 2 years then stopped working all together ~ just my luck i fall into a group of people this happens to so it progressed fast and i am now in end stage liver disease and finishing up my pre transplant testing . i know the pain you talk of and my doctor ordered a bone density test and i was diagnoised with osteoarthritus and thats what cause the bone and joint pain and stiffness , i now take a chewable calcium tablet that you can buy at any store ~ it has helped some with the pain and as for the tiredness it doesn't seem to ever get better i too used to fight it and still do at times but then i am totally whipped out so i have learned to listen to my body and rest as much as possible . as for the weight i have also developed malabsorption due to PBC and went from 120 to 90 pounds and now am malnutritioned and trying to gain weight , they say its better to have weight on before transplant ~ your healthier so i wouldnt worry much with the weight . prayers your way for things to get better or at least tolerable .
i read this with interest as yes I do and it is taking its toll on me!! I have always struggled to describe my symptoms but this hits nail on head if i added pain in my arms and bones then thats just it, i also lose my sense of taste and feel generally yuk. It comes and it goes and has worsened since having a test for addisons disease when they injected me with something to measure cortisol. My life style doesnt help I work 17 hr days and i am just exhausted to be honest. No pain killers solve this like real flu so u just have to grin and bear it. It comes and it goes, hate it ......
Hi all just seen this post I was diagnosed with pbc in 2009 having gone to the doctors with extreme tiredness and flu like symptoms which triggers off when I overdo things ,my biggest problem is muscle pain especially when in use like the arms (carrying shopping ) the legs(walking upstairs,hills ) the hands ( lifting pans peeling veg etc) In fact anything that requires strength and energy this tires me quickly if I don't rest that's when the flu like symptoms kick in and can last a while I am getting better at listening to my body and try to plan a head if I have functions coming up .if I have had the flu like symptoms for more than a week and am struggling to shift it I usually ask the doc for a quick course of prednisolone (anti-inflammatory ) this works like magic for me I can feel all the inflammation just drain away within a few hours , unfortunately this is only short lived as when the course is finished the symptoms return but are much milder . Big hugs to you all take care x
I had aches in bones especially when i got up in the morning and extreme tirednes. I told my consultant who asked for thyroid function an vit d bloods. I found out i had hypothyroidism and really low vit d.I stil have aches and tired days but not like I was
Hi All, I was diagnosed about 10 years ago and suffer as you all appear to do with the tiredness and the bone pain and weakness. I was diagnosed Coeliac about 5 years ago and since I have stuck rigidly with the gluten free diet I have found the bone and joint symptoms have eased massively. I still get a lot of back pain but in my case think that is old injuries playing up. I was told when you have one auto immune disease, which they consider PBC to be, you can be more prone to others, coeliac being one of my others. If you have any gut related problems or malabsorption problems, please ask you doc to test you for coeliac, it's now a simple blood test and needs to be done before you embark on a gluten free diet. If this advice could help one person not suffer as I did I would be delighted. Good luck to you all and stay strong.
The symptoms of flu like pain began years before I was diagnosed. Sometimes I would have 3/4 bouts of this a year, and without episodes being close together I just though I'd eaten something that disagreed with me. However, when diagnosed with PBC 10 years ago, plus other related conditions, and arthritis, I was told that I was having Fibromyalgia. Sometimes, it's hard to know whether I hurt because I'm having a bad day with PBC or if I'm going to have an attack of Fibromyalgia. If I do have an attack, it's seriously much worse than a bad day with PBC, and usually triggered by emotional upsets of one kind or another, so I try to stay happy and hope nothing goes wrong that will throw me emotionally. Good luck to all
