From what I understand, fatigue is a symptom of PBC that does not get better even if treatment brings LFTs into the normal range. I have had fatigue for years, and it is getting progressively worse. I can't do things that I consider normal, like cleaning the house, for example. So, I have hired a cleaning lady to come every other week and clean. I have tried exercising to give me energy - it doesn't. I am exhausted for the next 2 days trying to recover from a jog. I get plenty of sleep, 8-10 hours a night, but I wake up exhausted, never refreshed.
I am struggling to get anything done, really. My main goal is to simply make it to work every day. I usually lie down when I get home and rest on week ends. Nothing is getting done. What have you found that helps with fatigue or helps get things done? Also, what have you tried that did not work, so that I may avoid it.
Thank you in advance
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chynablue
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You might ask your Dr. about Provigil and NuvIgil. I took Nuvigil and I loved it mostly, but If you don't eat and are moving around a lot, then it can set you into overdriven do move through you faster. There are different doses and some will work better than for others. You'll have to watch your liver enzymes,because it could raise them, but there are other people taking it who have PBC. I have fatty liver. So, it might be worth asking about it. Good luck!
Hi Jean, I tried Provigil years ago because I was complaining of fatigue. I felt crazy and sped up like I was on cocaine or something! I gave up taking it immediately. But, perhaps I should give it another try and have the doctor adjust the dosage to the lowest possible amount. Thank you! It feels good to have an option to try at least!
It might be worth a try, as long as your Dr. thinks its safe. I don't know what the lowest dose is for provigil, but I was looking recently at Nuvigils website and they have a 50mg now. I didn't think they had that dose the first time that I looked at their site and even the Dr. thought their lowest dose was 150mg. He told me to cut it in half, so that's another option. I would just make sure you don't go without eating something for too long while your on it, at least thats when I noticed that it really started kicking in and especially if your being active. Good luck and I hope that you find something that works for ya!
Hello chynablue.
Yes fatigue is one of the commonest symtpons of PBC along with itching (pruritis). I started itching badly in early 2010 that led me to be diagnosed with PBC Dec 2010. I did have fatigue at the time but just thought it was due to my demanding job.
My LFTs 5yrs on are still outside normal range but not overly-so apparently. For me though fatigue vanished at some point during 2011. I get tired at times due to broken sleep during the night which is caused by itching. I still itch though that has changed over time and I tend to feel prickly and then quite itchy towards the end of the night.
I've thought long and hard in the last 5yrs when reading of others who have PBC who have either just fatigue or just itching or both and can't say any of it is good. I remember back in 2010 I was so fatigued pre-diagnosis that I would get home from work around 6.30p.m., flop down on the sofa and fall asleep often not eating tea that day. It seemed the only time I can recall that the itch didn't seem to get the better of me.
The only suggestion I can make is to try to keep up with a good diet even if you thought you previously had one like I did. (I was never prone to sickness pre-2010 and then got sturck with this PBC.)
I find that certain things round the home can be left if nothing major. My husband and I have a sort of arrangement that at the weekend when we are both home, we don't really do much round the house at all except wash pots and pans from having to eat.
I find that being active actually can make you rev up more. I try to find time to have a bit of a relax but know in my case I cannot for example sit and read a book as I feel prickly and then uncomfortable but I can do other things that somehow don't seem to make me feel that way. I am currently doing the new adult colouring books that seem to be the new craze in the UK. I find these for me can be relaxing moreso if I put some favourite music on as can other past-times when home (and moreso now we have the dark nights and colder months ahead) to occupy myself that all distract me in the daytime away from feeling prickly if I try to relax.
Peridot, I'm sorry you are having to deal with the awful itch! I think I might try the coloring books. It would be nice to have a distraction. It seems like my body is tired, but my mind is still going and restless sometimes! Thanks for the advice
I use vitamins A, D, E, K and Minamino. My biggest problem is the itching, and from time to time I get this pain in my right side for a few days. Hope someone can help you
I would try to take the exercise much more slowly and gently. Going for a jog sounds far too much too soon!
Aim to do something every day if you feel okay-ish, but don't do anything if you feel exhausted. However, if okay ... just go for a short walk, and then try to do the same, but a maybe a little more the next day you feel good, and build it up really slowly - and only when you feel that doing things won't exhaust you. You need to pace yourself, very slowly and carefully, but keep on at it whenever you can, and aim to build and build ...
If you read Collette's past comments on 'Bear Facts' or (presumably) in her section on the PBC Foundation website [see link at the top of the page] I'm sure she details how she built up to more and more exercise, eventually doing big cycling runs, yet [I think] her daily round is often walking the dog - and only when up to it.
Also, I wonder if it's worth being checked for depression. I don't have PBC (yet, just AMAs) but I have once felt how you describe, and that was depression after my husband died. Another thing may be to be checked that you really are sleeping well. A friend was exhausted and it turned out she had mild sleep apnoea (can't spell?), so was repeatedly waking up - but only fractionally - throughout the night. I think your GP could and should check for other reasons - you may as well get other things ruled out.
I agree not to worry too much about household chores, etc. Concentrate on having fun, avoiding stress, doing things you like - when you can - and it's also worth checking your diet. Maybe ask your GP to check your vitamin and mineral levels. Also is there anything you like that could be a gentle exercise: dancing, a mild yoga class, or going to any fun group that would involve a little walk? Now that age has curtailed my mountain walks, I always park as far as possible from my reading, writing etc. groups, so that although I have to drive into the town (no public transport) , at least I still always get a good walk to and from the car.
Thanks GrittyReads! I will make my goal to walk the dog around the block instead of jogging. If things don't improve, I will see if my doc will recommend a sleep study as apnea runs in my family. I hadn't thought of that.
Hi Chynablue, I'm sorry you're suffering the same debilitating fatigue as I am. I was diagnosed with PBC due to no improvement in fatigue following a thyroidectemy. I returned to my job which required me to drive long distances and more often than not excessive hours. When I told my line manager, who was a bit of an idiot to be fair, that I was struggling for the first time in a 20+ year career, I received little support. He tried to be clever and referred me to occupational health who advised the organisation that I was disabled under the equalities act and they had to make reasonable adjustments. Long story short the adjustments were minimal and I was left with no choice other than to take early retirement on health grounds. The fatigue hasn't improved however I can now rest if I need to and pace myself. I joined a gym and found this helpful, yes I am still exhausted but I'm exhausted whether I go to the gym or not. My GP sent me an article which I found helpful as I struggle to explain the fatigue to family and friends. I've copied the link for you. Take care
Hi Tigger, thanks for the link! Yes, that article sounds very much like the way I feel most days. I think it might be a good point for me to keep in mind that I will be exhausted whether I go to the gym or not. Perhaps it will motivate me to at least try, especially on the days I just want to give up!
Hi Chynablue, the article really helped me because I just felt that no one understood how awful the fatigue is, and I'm sure people thought I was exaggerating. Comments like "well everyone gets tired" or "oh I know how you feel, I'm shattered too" really didn't help. I've resolved that by showing the worst offenders the article. They now understand that this is something very different to normal tiredness. Hopefully you can get some support from your employer too. A few adjustments to your workload could help immensely. The gym helps me but I'm not working anymore so you need to remember to pace yourself. If you don't feel up to it don't do it. Take care 😊
I also have PBC with an AIH crossover. I suffered from debilitating fatigue and just general yucky feelings for what felt like an eternity. I was desperate to feel normal again, so I set out for an alternative solution. For the past 6 months I have religiously followed a plant based diet consisting of fruit, vegetables and grains - NO animal products (meat, eggs, dairy) what so ever and no oil. I have had unbelievably wonderful results - I truly feel great again and have also lost 30 pounds as a result of changing my diet. My enzyme numbers are very close to normal range for the first time in a very long time as well. In encourage you or anyone suffering from fatigue from PBC to research this way of eating. It's not the easiest diet to follow, but the results are worth the effort. Oh, and I also started doing gentle yoga, it also helps with fatigue and doesn't leave you exhausted. Good luck and feel better!
Hi Happyclam! Yes, I love the plant based diet. I am also sensitive to gluten, so I've cut that out of my diet as well. Even though my diet seems to be very healthy - no meat, no dairy, no eggs, no alcohol, no processed foods, avoid gluten, avoid fats, avoid simple carbs and sugar, low sodium - I just can't seem to lose weight. Once I have a treatment plan with my doctor, I will ask for a referal to a dietician. There must be something I'm missing or doing wrong.
Thanks for your note! I'm surprised you haven't lost weight eating so well. Maybe you don't have much to lose? Let's compare notes - what do you eat in a normal day? Do you feel better and have better energy eating this way?
Oh yes, I do feel much better eating this way, and if I go off diet to allow myself some bread or steak or something fried I definitely pay for it with swollen tummy, aches, and more fatigue. I would like to lose 10 lbs, but have had no success unless I do intense exercise like jogging and I just can't seem to do that anymore. I would be at my ideal weight if I lost 20 lbs. I have tea or coffee with oats, fruit, and maple syrup for breakfast. I experimented with eliminating coffee and tea because of the caffeine, but I found that I benefit from the energy boost in the mornings and its full of antioxidants. The benefits outweigh the risks in my case. On Sundays I make a big pot of vegetable soup from fresh veggies, cabbage, diced potato and chickpeas. I take this for my lunches at work. Sometimes I eat out for lunch and get soup and salad, but I found that soup and salad dressings can have a lot of hidden sodium and fats, so I am very careful to watch for that! Dinner is homemade gluten free veggie pizza or beans and rice or veggie fried rice or vegetable curry with rice or tofu miso soup. Sometimes we go out for dinner and I try to make good choices, but again, it is loaded with sodium and fats that irritate me. Between meals I have snacks like a banana and tea. Oh, and I drink water. What kind of stuff do you eat?
Wow, it sounds like you have a good plan. I think the last 10lbs is the slowest and hardest to lose. I have 7 more to go to meet the goal that my Dr. set for me several months back. I'm happy and comfortable with my weight and size now, but for the health benefits I want to get to the goal weight - just as an extra pro-caution. I eat pretty much the same thing everyday unless I'm out with friends or traveling. Breakfast is muslix cereal with berries and almond milk. Lunch is a salad with cucumber, tomato, yellow bell pepper, onion, chick peas, olives, avocado and 1 cooked sweet potato with lemon juice and lemon pepper. Dinner is lentil bean soup and brown rice. I snack on fresh fruit or air popped popcorn if I'm hungry in between that. I don't let myself get hungry. If I'm hungry, I eat - I think that is key for avoiding the fatigue. I've had no symptoms since I committed to eating this way. Oh and I only drink water with lemon - no soda. Eating out is a challenge that I haven't mastered yet, so I tend to splurge there - but like you pay the price the next day with a tummy ache.
For me the changes in my diet really helped to the point that I am only fatigued sometimes now. Cut out red meat, soda, cut down on coffee, try to eat more fruit and veggies, don't eat as much cookies or cakes as before. I love fish and try to eat it more, I'm still a long way from being the most healthy eater but I have noticed an improvement. Good luck to you.
Hi, chynablue. The doc helping me the most to manage PBC has impressed upon me the absolute reality of stopping to rest each day. Prior to my diagnosis, I usually went nonstop from morning to night with a work schedule of 9-10 hours each day. Now my routine is to work 5 hours, rest for 45 minutes, then work another 3 hours. Doing my schedule this way has allowed me to continue working. When I don't stop and just keep working because I feel something must be done, I pay for the lapse with less energy for the next few days.
I was diagnosed May, 2014 and I am still trying to master this new schedule. I also have ADD and that gets me off track with time. I improved my diet with more fruits and vegetables and less sugar and oils as well as went to all natural products for personal care (i.e. soap, shampoo, etc.) to reduce the load on the liver. I am much better now as long as I take care of myself. Housework gets done when it gets done. I keep the rooms my clients see in good shape (I work from home) and don't worry about the rest of the rooms. I am blessed with an understanding husband who encourages me to rest each day since I am much nicer to be around when I am not so tired. I encourage you to try different things until you find what works for you.
Sorry to say i have a bad problem with fatigue...apart from the itch it is the worse symptom i think.i was suddenly poorly whilst pregnant with glandularfever.
The only advice i can give is dont fight it...
It just makes the crash time longer.in the beginning i fought so hard and would end up in bed for a week or 2.pace yourself..think about reducing your hours if you possibly can.get the cleaning lady to do the heavy stuff e.g.hoovering changing beds...
If you feel up to it then do the dusting or wipe a sink or loo.flashwipes are great.if yoi have a hobby put your energy into making sure you dont give it up.i sing in a choir ..
They let me sit down for rehearsals and concert...im done in for the week after but enjoy it so much ...its worth the aches and pains.oh and eat little and often.good luck.
Hi Cazer, I think that's a really good point. I have to accept that I have a limited amount of energy each day and decide what truly deserves my time. Another thing that scares me is that stress is bad for my poor liver! It can make things worse. So, if I fight it and get stressed out, its just not worth any further damage. I don't want to accelerate the disease.
Love the name ny the way.it sounds to me as if you are a gpod way on with acceptance of your situation....which is really good.it is so hard i was 36 with a prem baby and 3 other children when i found out what wromg but was so relieved i was going to live that that improve my attitude to pbc.our kids have all.survived to tell the tale.we did manage to get some homehelp hours as they were all under 11..but had to fight for that..my husband was still working otherwise we would have lost our house so it was all a bit of a blur!
Some people dont seem to get the fatigue and its so overwhelming that you just cant ignore it or push through ..as i say it only makes matters worse.do you have anything you love doing?focus on the nice stuff..see friends for an hour ...have a gentle walk.if i go shopping we do a little bit then i sit in a cafe for half an hour do a little more.if there are going to be long cues for somethimg i take a lightweight fold up stool...old grannyish but it means im not wasting my precious energy before i get in somewhere.use lifts etc then when yoi get home yoi wont have to lie down or have nausea...you can always climb a hill a different day!i always have a bottle of water and a snack with me to avoid the nausea if i can.
When i go downstairs i chuck stuff e.g.washing down and take all the essential i can carry that way i may feel up to walking up the road to my friends for a drink which is far better use of my energy than carrying stuff up and down the stairs...self preservation is key and doing what you enjoy most.....the dust will never kill us!!! Sorry to rabbit on and yes you are right stress is a pbcers enemy so do the good stuff.best wishes cazer.
I'm glad you said that, Ohio82. A close relative asks me to do favors for her all the time. I feel guilty saying no because I don't want to hurt her feelings. But I have to put my health first. The last time I said no to her, she got angry and said I was a lazy alcoholic (in reference to my recent blood tests pointing to liver disease). I was so upset, but its not true. My disease isn't caused by alcohol, and I'm not addicted to it. I'm just fatigued. She just doesn't get it.
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