Fatigue

[LStonelli]

Does anyone with PBC have the fatigue everyday, and does it cripple you to where you cannot function? I have been diagnosed since 2010, and just the last 2 months the fatigue has gotten worse...anyone have a clue about this, does it mean I am getting worse or further into this disease. Any suggestions on how to cope would be greatly appreciated. I feel like a burden to my husband and the rest of my family have no idea how I am feeling. Thank you, hope to get some replies

[silverbirch]

hi i would strongly suggest you go and see you gp if your fatigue is getting worse they can at least do the relevant blood tests and check your general health to see if that is causing the added fatigue.

my fatigue levels fluctuate there are days and even weeks when i am totally ok with my energy levels and then all of a sudden the fatigue strikes and it takes me all the time to be able to continue in my part time job.

i have found exercise no matter how gentle helps to lift both my energy and stress levels. on really bad days i just make do with doing some very gentle yoga stretching exercises and then on better days i do either a more intense yoga routine or a cardio routine (for the cardio i use the ninentendo wii).

best wishes

caz

[LStonelli in reply to silverbirch]

Thank you for your reply....I do try exercise, mainly walking, but when your body feels like you got hit by a truck, it is hard to do anything but lay down, my best to you!

[June9961 in reply to silverbirch]

Hi, I have had PBC for 15+ years and fatigue has been the worst symptom. My consultant says that unfortunately it is the part if PBC that they can do nothing about. Because of severe muscular and joint pains I find it hard to exercise too much. There are days when just dusting the furniture can exhaust me. I have learned to manage it and at the beginning of the day when its my fittest time I do most of my housework. My last set of bloods were the best I have ever had and I have had some respite from the pains but unfortunately not the fatigue. I've tried everything suggested by others on here, adjusted my diet, taken milk thistle, vitamins etc but nothing works for me. Hopefully something will work for you but remember don't beat yourself up about it, its just another silent symptom of this unfortunate illness

[Poppygayle]

Hi stonelli I can totally relate too the fatigue your suffering and do have it every day, my energy levels are best in the mornings and by afternoon I usualy need an hours nap to recharge my batteries I have had pbc for five years now and am pretty good at listening to my body .i agree with silver birch if your symptoms have got worse you need to have it checked out by a doctor to rule out other things that can cause tiredness ie Thyroid & Aniemia etc . X

[spoul]

I too know how you feel. I was diagnosed 16 yrs ago and even back then the symptom that took me to seek medical advice was fatigue. I already had under active thyroid so just assumed I needed more thyroxine!

Over the years since being diagnosed I made many adjustments at home and work which culminated in me taking ill health retirement 4 years ago. Like poppygayle I still have to sleep for a couple hours in the afternoon so I can get thro the evening. I do remember my consultant saying many years ago that sometimes even after transplant the fatigue persists.

It is a horrible thing to suffer and I really do empathise with you. Be kind to yourself and take care xx

[PBCRobert Partner]

Hi,

We do a huge amount of one-to-one support in terms of managing and improving fatigue.

Give us a call to see if we can help.

I hope you all know, by now, but people with PBC have issues with lactic acid and so the first ten minutes of exercise feel even tougher than normal.

That does normalise but it can give you the false impression that exercise isn't for you.

There are many forms of exercise that can bring emotional and psychological positivity as well as physical. It's about rewarding your investment, rewarding your energy expenditure. There is an enormous difference between a trudge round the block and a fun walk with family, friends or even a pet.

There are so many examples of low impact exercise that can still improve fatigue over the long term...

[Jtxx in reply to PBCRobert]

Wee question for you Robert. Does the level of fatigue correlate to the condition of your liver? X

[Hidden in reply to Jtxx]

Yes as Robert has stated, it is said that devels of fatigue and also the itch does not correlate with the condition of the liver. I think it just varies between patients.

I believe that we ourselves get certain feelings that something might not be quite right or there have been changes within ourselves and in that event we do need to seek that medical opinion.

[gizocsi in reply to PBCRobert]

May it be on skype? I need some advices...

[Julez1961 in reply to PBCRobert]

Thank you I didn't know about the lactic acid. That is exactly what it feels like yeti dismissed it as I hadn't even got out of bed.

I have been to get weekly massages and they help enormously as they are moving it. (Now that I know)

Thank you so much.

[Abigail53 in reply to PBCRobert]

Hi Robert - I did not know about lactic acid either. Is there info on it that could be e-mailed to me? I'm in the U.S. - Abigail53

[Betsyjc3 in reply to Abigail53]

Hi ... I'm also in the US and you're the first person that I run into with the same condition.

Where are you located? And what type of doctor is treating you?

Betsy

[Abigail53 in reply to Betsyjc3]

Hi Betsy im in houston and am goig today for a physical and to talk to my pcp about my fatigue and flu like muscle and joint pain. Over the weekend I set my timer for 15 minutes and did housework and felt aweful. I rested for 15 then did another 15. The first 15 were bad, but as I stayed at it the fatigue decreased. I wasnt doing manual labor, just continuois 15 min work, 15 min rest. I'm not sore today which surprises me. Hopefully my pcp will have some answers or suggestions.

[Betsyjc3 in reply to Abigail53]

Good morning Abigail,

How did the doctor's appointment go?

Betsy

[LStonelli in reply to Betsyjc3]

Betsy, I am in New York and I see a Gastro doctor....where are you from?

[Betsyjc3 in reply to LStonelli]

LStonelli .. I'm in Virginia, just south of DC. I was seeing a Gastro doctor, but she basically prescribed the Urso and sent me on my way. My primary care physician was the one who suggested I use a more "skilled in the disease" doctor and he found me THE BEST DOCTOR in Richmond, VA. Dr. Arun Sanyal at VCU Medical (a nephrologist) who has a great deal of experience with PBC. He spent a good hour with me on Tuesday - explaining the disease and charting the treatment plan. I'm still tired, still have joint pain .. but the "mental" belief that a medical professional is now in the game with me, has already made all of the difference in the world. My attitude to push myself a little harder has already adjusted.

[LStonelli in reply to Betsyjc3]

Betsy

[PBCRobert Partner]

Hi, Jt.

I can't speak with any authority on Overlap. However, in PBC fatigue is not dependent on either LFTs or cell change within the liver.

It's important all three aspects are monitored because any one can change without the others necessarily doing so.

I hope that helps.

[Jtxx in reply to PBCRobert]

That's what I thought. Thank you for clarifying this point. X

[PBCRobert Partner]

P.S. That lack of correlation is also part of why we have never fully understood the fatigue that comes with PBC.

[Hidden in reply to PBCRobert]

Though fatigue isn't understood in PBC my own beliefs here is that the liver is the all important organ that does many a task and a tired liver makes for it all the more.

I recently read that ask anyone which is the most important organ in the body and 9 out of 10 would reply it is the heart when in fact it is the liver that does the most work in our entire system.

[NotorDJP]

I have had PBC, probably for 10 years, but only diagnosed this year. Fatigue has always been my main symptom and will still get me. I still work a full time job, have an active volunteer life through church and help take care of my widowed father and my great aunt. I daily feel there isn't enough of me to go around. I know some day I will have to give something up. I've already spoken to my employer about restructuring my day and they have been open to it to a degree. I am not financially able to retire yet, but hope to be in a better spot with that maybe in a couple of years. I get the muscle and joint pain too, and if I get anything else. (a cold, flu or whatever) I am totally out of it. I have found vitamins a lifesaver, and sometimes if I force myself to be a little more active it helps. But there are times when sleep and rest is all you can do. Keep your chin up. It isn't always easy. But if you are having severe fatigue and you are early days in your disease, you may get something else checked. We chalk up all our fatigues and symptoms to PBC sometimes, when we can still get other things. Already mentioned here is thyroid, (a biggie), as well as other autoimmune conditions. Some meds make you tired too.

[Hidden]

Hello LStonelli.

Well it is reported that the severity of itching or fatigue in PBC is of no real indicator as to how PBC really is.

Seems that both these symptons vary between individuals. I suffered both fatigue and itching back in 2010 the year I was diagnosed and I never thought anything of the fatigue due to excess workload and working above and beyond the allotted full-time week I was doing at the time. The itching was what took me to see a GP and then I got on the road to PBC diagnosis (Dec 2010).

Fortunately for me the fatigue did lift and vanish at some point during 2011. I do however have days when I just feel quite flat and washed out but it's actually down to the fact that the itching often keeps me awake during the night and I get little sleep so it carries over into my daytime.

There is apparently some clinical trial on-going with regards to fatigue in PBC as it is deemed one of the symptons that can be quite life-altering. Itching is also like this too, it does have impact on my day-to-day living and I cannot believe that it isn't far off 5yrs since I started to itch. I can't even remember life when I never itched now.

The only thing that is probably for fatigue is to pace yourself and go with your own signs. I find planning future events tricky these days as often if I've had a bad night and I don't have to drag myself out of bed then I often these days tend to sleep in longer than I used to do. I am 50 by the way. I've always been a very active person but I have to admit that since PBC though I still get out and about, I do find I have to push myself that much harder and days when I dont' feel like doing something I really have to picky myself up and just go for it as I myself do not want to get stuck in that rut where I end up giving in. May naiive doctors would say that it is all down to feeling depressed but I totally disagree.

[hotdog in reply to Hidden]

Hi Peridot

Like you I suffered from severe itching causing blood spots on my clothes and sheets and have tried various types of medication to help stop this.

At last I have, as my GP put me on Telfast 180 mg film-coated tablets (one daily) and what a difference it has made. I now only have the itch slightly in the evenings and not at night anymore giving me a good nights sleep. I know you are not keep on taking any more medication but thought I would mention this as it has been so beneficial. No more blooded sheets to wash!!

[Hidden in reply to hotdog]

Hello hotdog.

Well you must have itching much worse than what I have had so far. Can't believe it is nearly 5yrs since I started with the itch.

I do not encounter the problem of having blood spots on bedding at night though I do of an occasion cause one, usually on my legs below my knees and occasionaly on the bottom. Seems to be when I sit down at night, the parts that are with the most weight on them, ie bottom and legs, that is where the itch starts.

In the earlier days of taking urso I did get nights where I never felt the itch at all but can't say I've actually had an itch-free evening now in 6mths.

Now the British weather has turned into autumn I am finding I am far more comfortable due to the fact I am not encoutering the heat. Though the sun was good I did tended to find that it did also cause me to start itching and feeling prickly even during the daytime. I am fortunate in one way I do not live in a central heated home but I certainly felt it during last winter when my sister was hospitalised all through the winter and spring months and visiting at night with the heat just caused me to fidget on those awful vinyl seats that they have.

I will keep in mind the name of certain meds that others have been taking with seemingly a good success rate jsut in case that the itch does take a change for the worst in the future.

Meanwhile I am pleased to hear that at present someone is managing pretty well with this itch and hope that the resolution is long-lived.

[LStonelli]

On another note, does anyone have constant nausea? Not sure which is worse, the fatigue or the nausea....if so, any solutions out there? Thank you all for your replies, very helpful!

[Julez1961 in reply to LStonelli]

I do suffer from that a lot it's almost like morning sickness but just deal with it by eating a small meal more often and whatever you can keep down. I have gone crazy on dumplings as you can have however many you can eat and it isn't an overwhelming big steak meal that I look at and instantly feel I'll.

[pbcgirl in reply to LStonelli]

My nausea isn't constant but frequent

[LStonelli in reply to pbcgirl]

Mine is constant, any solutions?

[squeak67]

As someone who has been recently diagnosed in the last 9 months. I feel your struggles. There are some days I cannot get out of bed because of the exhaustion and extreme pain. I am in the midst of going to Mayo because my symptoms (plus other possible diseases) have been getting worse instead of better - the one constant thing everyone has told me is - unfortunately this is part of the disease. I refuse to accept this answer. I am starting to look into other options besides western medicine.

The one piece of advice I can give is listen to your body. Sleep and rest when you need it!

It is tough on our families, I know they want the best for us and we cant think of ourselves as burdens.

I know my husband, children, parents and co-workers feel helpless. So let them help you when you need it. Don't try to take on everything yourself. The hardest thing for me was to ask for help or to say no. I am starting to realize my limitations and it has made a big difference.

As for the progression, are you on Urso? That should help stall the progression of the disease. If you are worried - make sure you get your levels checked and talk with your hepatologist.

Hang in there!

[gizocsi]

I've read about demages of mitocondria -- the energy part of our cells -- in PBC as cause of fatigue. I know one thing, NuSkin's R2, whats made of a chineese mushroom. After 6 weeks it worked for me with fatigue. After 2 years I should try again, as it's becoming worse now, esp. with heart problems, what is promised us too... It's really a miracle, this R2

It's funny, but we can still read about pbc-ers getting antidepresants on fatigue... my neurologist knows, that it comes from liver, and he prescribed 50 mins of light sport per day

I hate to walk or go with anybody except my 87 years old Daddy, as I can watch their backs...

Don't worry, because it's coming in waves, some days, some months are worth. And yes, better not to get flue... Be well!

[Hidden]

Hi LStonelli,

I understand the fatigue and frustration that comes with it ,I'm struggling with it and been off work for four months. Trying to get back now and work organising a longer phased return than normal for me , however I'm scared I won't cope fulltime hours again. My commute to and from work is 1 1/2 hours adding three hours on to my working day . Before I went on sick I was trying so hard to stay strong and put brave face on but I would end up in tears in toilet feeling so tired.. I too suffer from the constant nausea, horrendous itch, joint pain and brain fog .

People look at me and don't see the illness so don't understand .

Since being diagnosed I feel it has taken over my life , I don't want to have to justify why I feel so tired all the time, I just want to be the person I was before taking ill .

Wishing you good health in future.

Angela xx

[NotorDJP in reply to Hidden]

I'm in your shoes, though I haven't stopped working. I used to end the year with vacation or personal days left, but now I wish I had more. I am lucky that I have a job that if I need to come in late or leave early, I can. But that isn't always possible, and it never fails that those days are the worst days. I make sure I get plenty of sleep, but sometimes it isn't enough. Most people don't understand what its like to just feel "unwell" most of the time. I know people get sick of it and I really feel like my co-workers, employees and others are getting there with me. I hate to constantly have to explain why I can't do this or that. I don't have children, so no worries there, but my poor husband, though understanding, gets the short end of the stick. I have so much more I would like to be doing, but I just can't after a while. I love the "well you look great" like that means I feel good. The joint pain and brain fog get to me too.

[LStonelli in reply to Hidden]

It is very frustrating having to make excuses for not being able to do the things you once did without giving it a thought. The fact that everyone tells you, you look fine is hard to take after a while! Knowing others out there are going thru the same thing, makes one feel that they are not alone! Never know what to expect from one day to the other. I want to thank everyone for their replies!

[LStonelli]

I am right there with you, please email me @[e-mail]

[KevinHall10_]

I am right there with u. I feel so tired, i am actually feeling worthlessbecause i want to rest alll the time

[LStonelli in reply to KevinHall10_]

How are you feeling these days? Any relief?