Does anyone have the same problems I seem to have with fighting off things like colds, chest infections, etc? Just before Christmas I started with a cold which turned into a sinus infection and it really floored me, even more fatigued than normal. Had antibiotics which infection but still snuffly. Then Tuesday it hit me again, another sinus infection and more antibiotics. I feel soooo washed out. I haven't been able to go to WOR as I just couldn't do the 45 minute drive there and back, let alone work once I got there. Thing is some people do not understand. Its like "its only a cold why can't you come into work?". Whenever I get poorly its like all the energy gets sucked out of me, my body feels like lead. Is this just me or do other people feel like this and do you think it is because of the PBC? Sorry for the moan but I am feeling rough and a bit sorry for myself at the moment.
Here's hoping for a better New Year for all of us.
It's cold and flu season . Get a really good multi vitamin, rest and drink a lot more water. It gets darker earlier and its cold outside. All this makes everyone less energetic whether we have PBC or not. Flu shots and good hand washing often help you ward off re occurance of colds etc too. No one should be going to work while they have cold symptoms. It's contagious. Do what's best for you and don't listen to these comments. You need to look after your own health not their demands. Feel better soon and have a Happy and Healthy New Year.
Thanks, I hear what you are saying, I do have the flu shots every year. I will definitely do more water and get some extra vitamins.
Hi
Yes I felt just like you described, but with no infection, no need for antibiotics. Just a cold and dreadful cough that floored me for two weeks. I could not find the energy to do anything and of course I needed a certificate for work so a trip to the GP was needed.
My Gp put this down as as post viral fatigue on the certificate much less explanation needed at work than if he put two weeks off with a cold. It took a good month before I was fully clear of it so for me I think for me the PBC does play a part but I am also getting older.
Rest and only go back when you feel able , you don't need added stress , that will deplete any energy you do have.
Take care and happy new year.
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Yes I forget that I am getting older, I suppose I still feel I should be able to do what I always have. Its good your GP is supportive with your sick note. I never really thought about it but I have had quite a stressful couple of months. Perhaps that has contributed to me being less while to fight the symptoms.
It is to late to take this now but when your cold has gone. then the first sign of a cold or sore throat take Echinacea even if you wake in the night first signs of this I have got up in the night to take this.
So sorry to hear you have been so badly hit, and I hope you recover soon.
I want to second what Susanburgess says about Echinacea. I may not (yet?!) have PBC, but I am getting on a bit and I've noticed that when I do get cold bugs, etc. they hit harder and last longer. I've found that taking Echinacea regularly does help, so I have some whenever I feel even a bit off-kilter, and not just at the signs of a cold. When a cold threatens I'm much more diligent, and keep taking it until the cold is well gone. It does help so much.
Also, Vit C and Zinc seem to help. I also take 'Rescue Remedy' as soon as I feel a bit off, and particularly if stressed - I've noticed my colds, or other 'bugs' do grab if I'm particularly stressed [NB must admit, I don't know if this is okay with PBC]. Above all, keep warm, drink fluids and keep eating good nourishing food. I've noticed that since I've been following this regime, things are better.
If it makes you feel any better, here in the SW there is a really nasty 'recurring cold' bug doing the rounds, and some of the healthiest and cold-proof people I know have succumbed to it, so maybe you have a version of that.
Finally, how about asking for a 'flu jab? You should qualify with the PBC - again check it's okay for PBCers, I'm sure it is, I'm sure I've seen people singing its praises on here.
Thanks for these suggestions I will certainly stock up and keep dosing myself, as
I said earlier I forget I am getting older and my body needs more help. Also perhaps as you say it is this recurring bug. I do have the flu shots, maybe I would have been worse without it. Thanks.
Welcome to my world- I have autoimmune Hepatitis- my job entails driving & dealing with the public- constant contact with sick people- my doc totally dismisses the debilitating fatigue - will not support a disability -I barely function - will no doubt be fired - nobody gets it
I am so sorry to hear that you are not getting the support you need from your doctor. Thee winter months must be really bad for you especially with all the bugs going round. Are you seeing a heptologist? Maybe you could be referred to a different doctor, some are a loot more understanding of the illness than others. Hope you can get more help and support.
Just to commiserate and to second what Greensphene has said. If you see your consultant every so often I would push really hard for him/her to sanction more to be done about this - it really should not be left to the vagaries of a GP's possibly imperfect understanding of complicated conditions. My GPs are pretty wonderful and up-to-date and our practice is (maybe ?) not as cash-strapped as some, but I know more than them about some aspects of PBC. Many GPs know very little about many autoimmune conditions, and many are now also keen to keep all but 'death's door' patients from referrals, but I think you do need much more consideration.
Have you been thoroughly checked for other autoimmune conditions? Many are possible where we already have one. I was tested for whole raft of things when PBC was suspected, and there are many which cause fatigue: eg thyroid conditions, or lupus. I don't wish more things on you, but your GP has no right to dismiss your symptoms and condition if other things have not been thoroughly investigated and ruled out. Also have you had full check of your vitamin and mineral levels? If not they need checking, the cause of the fatigue could be as simple as ... low iron. But once things have been ruled out, then the fatigue itself should be assessed, and your GP is wrong to dismiss it.
If you are to see your consultant, get him/her to sanction action by your GP. If not, ask to see another GP in the practice, and run through your symptoms and problems in great detail.
I do hope you get some answers and help, take care.
I do it really sucks I'm on 30 day probation with my job after 11 1/2 years then get pneumonia on top of it . I need my job badly but sometimes I feel like Im doggy paddling in the middle of the ocean.
Some great input here, but IMHO the single most important thing you can do to boost your resistance and overall health is to make sure your vitamin D levels are optimal. Not just sufficient, but optimal. Nothing else that I've implemented has had such a monumental impact on my resistance and general health. My rheumatologist considers it essential for autoimmune disease sufferers to maintain blood levels in the 60-80 range (and he is considered tops in the field). I used to catch everything and had prolonged recoveries. After getting my D level up it has been nothing short of miraculous - I now rarely succumb, or if I do occasionally get a touch of something, it is mild and brief. I take 5000 IU/day of Vitamin D3 to maintain my blood level around 70, and try to get sunshine when weather permits.
Thanks for this. I know last few blood tests show my vit d on low side of normal. I have in past been prescribed vit d. Didn't realise how important a high level was. Thought if it was within normal it would be OK. I am def going to get some strong ones now. Thanks again
You are most welcome, and best of luck to you. To raise my levels I started with 10,000 IU/day for a month or two and tapered down to 5,000 IU to maintain. Of course everyone is different, so monitoring the blood level is important.
Thanks for this. I know last few blood tests show my vit d on low side of normal. I have in past been prescribed vit d. Didn't realise how important a high level was. Thought if it was within normal it would be OK. I am def going to get some strong ones now. Thanks again
Low vit levels can sneak up on u to my Dr tests me every 6 months for the water soluble vit to be able to adjust them. At one time I was taking 100000 much of vit D and I take 325 mg of iron the difference is tremendous. Not near as miserable and between that and urso my enzymes have gone down to a doable level.
If anyone around me has the sniffles, or coughs, I wind up getting sick. It's the worst and no one understands how draining it is to be fighting a cold on top of having chronic fatigue issues with PBC. I am glad that most of us look healthy while fighting and living with this disease, but it sucks being judge by people on a regular basis for being sick and looking healthy. There needs to be more public education on PBC so people can better understand what we are going through.
Yes, I totally relate. I pick up things much easier than in the past and have been hit by skin infections as well, this year several times with impetigo. Having a compromised immune system leaves me open to things like that. It takes a toll - I have low energy already and then the stress on my system of dealing with an infection creates more tiredness. It's a bad cycle. I feel for you. I really try to take time when I get sick and that seems to keep the duration down. Sometimes, though, it's not possible to do that.
Hello Greensphene.
I think we are all prone to certain things be it sore throats or colds and yes I do think that in PBC if one is already feeling fatigued with it then it will more than likely make it feel a whole lot worse than it might perhaps have been in someone who hasn't got PBC.
I've long since got fed up of folks saying 'Everyone gets tired' and even the itch due to there being nothing visible when you do itch (unless of course you manage to make certain areas bleed with a scratch) it is just something that is what I translate from other 'normal' folks to say, "It's trivial', it just makes one feel even more down.
I also think that this time of the year with it apparently being the season when everyone is coughing and sneezing and colds doing the rounds, someone with PBC can be mistakenly shrugged aside as just one with something that is the same as others with the symptons.
I tend to find myself sluggish during the colder months. Think with no sunlight or very little when we happen to get some like today after a night of ground frost and then nights coming round quicker in the UK at the same time doesn't add up for a great time at all.
I count myself fortunate that I have never been a sufferer of colds during the winter months and since PBC diagnosis in 2010 I have remained without any such like too. (I do find the itch debilitating at times, causes tiredness badly some afternoons after a rather restless night with not much sleep at all.) I also have to say that now I have PBC I am offered flu jab annually but I have so far always declined (my theory is if I don't suffer colds and don't think I've ever had 'flu then I might just lay myself open to these things in even of a jab).
I do think that in our times now, the whole system of who is really debilitated or disabled with some infliction is very scant indeed. I do think that this is one reason that certain conditions are not taken as seriously as they should be. True I look fine and I go about day-to-day in such a normal manner but not at night-time I don't, I tend to find myself morphing as the itch takes over until around 5a.m. Due to taking urso I find certain family members and even friends if I was to inform them I had PBC think that by taking the tablets daily the PBC is under control and that is how it will remain. I did find out that if one was unfortunate to have a transplant for PBC deterioration and things were all ok following, you are deemed sort of cured straightaway by our DWP for disability. It might not work that way, the PBC will remain regardless.
I do think that until some celebrity developed PBC and then brought it out into the open and then kept on discussing it, it will more than likely remain something that is quite unknown by the ordinary guy off the street.
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Yes that's sometimes the thing these days, it isn't "interesting enough."
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