hi everyone
I was diagnosed with PBC over a year ago. The tiredness is awful. I can’t seem to shake it off. I work Monday to Friday until 3.00 as a classroom assistant but after work I have no energy to exercise. Is this normal? Any suggestions or advice would be so appreciated ? Does anyone take any supplements / vitamins that specifically help?
thanks so much in advance x
Hi! The dreadful fatigue is like nothing we've ever experienced before. I totally understand from my own experience. Believe it or not, exercise (of any kind) does help. I know what that sounds like but it works.... even just walking around the house or marching in place. I am a firm believer in chair yoga. You can Google or utube videos - simple things to do right from a chair. It' might be a good place to start. In the US some of my members use a medication called Provigil and it seems to help some folks. One of my members uses Sam-E ( a supplement) can has helped her tremendously. I will try to post the literature she has on using it. We all wish there was some 'magic' pill but I assure you that pharmaceutical companies are working such a miracle for us.
Thank you Donna. It’s getting the motivation and energy to do the exercise .. I’ll try harder.
Just start..do 2 minutes. Don't be hard on yourself. Find what you can without stressing yourself.
Thank you. I keep signing up for gyms, boot camps… then when it comes to it, I can’t go due to extreme tiredness after work and no motivation..
In all honesty, a boot camp is tough. Start with something easier. Do you have a partner you could even just walk with?
Yes my husband or grown up kids would walk.. just need a big kick up the backside ! Maybe will have to cut some hours down at work.
just be realisitic when you start.. set aside a specific time and day to walk. Actually schedule it in your day when you decide to do it..Makes it easier if you are accountable to someone else who counts on you to walk.
how was your week?
Thank you so much for asking Donna. Well, I took your advice and walked a little bit in the evenings. I also went swimming one evening! I’ll keep on with this. Thank you. I hope you’ve had a good week?
I an so proud of you. You should ge proud if yourself! I've had a pretty good week. You've motivated me to start walking- seem to have trouble just getting out the door.
The fatigue is excruciating. I can fall into the deepest of sleep everyday after 2 if I allow myself and some days I have no choice but to as I cant function. I have found cold water to be a saviour for me and really boosts my energy and immune system. In summer when the water is warm a cold shower also helps. Also pushing yourself to do some sort of physical activity in the morning is best. Then at least you know its done and you can take the pressure off. Even a walk for half an hour while you wake up but I know it can definitely be easier to stay in bed as you just feel too tired to do anything. I try and link in social catch ups with friends with walks so I am motivated to walk while we talk and that seems to help to.
I love everything you said! We have to be realistic about exercising when the fatigue is so bad. Motivation comes but we have to be kind to ourselves. I agree that getting the 'exercise' done early in the day does take off that guilt of maybe not doing it at all. I love the word you used - pressure. I do the same thing. I often will struggle all day mentally about the fact that I should get up and do something. In all that wasted time, I could have gotten it done already.
Hi Deemum l know it is difficult at times but exercise or some form of physical activity does help. I joined a gym and gradually built up a fitness regime start off slowly perhaps treadmill or rowing machine or try one of the classes. I have made lots of new friends young and old (I'm 73) and go 4 mornings a week two hours each time. I have lost weight and have a waist again!! If l feel tired one day l change my day. My gym also does aqua aerobics which is easy on the joints if you have problems in that dept. I feel so much better and on my rest days between sessions I'm itching to get back. Give it a try! I was diagnosed in 2018. Give it a try! Good luck x
Good for you! all great suggestions... I love my water aerobics twice a week. It does become a social thing as well as exercising.
Hi kingsnorth. I’m so glad you enjoy the gym. I will start with walks and hopefully soon build it up and get the motivation and confidence to find the right gym. Hard to know which gym. There are a few near me - one which I’ve looked into and they are ladies only and small classes. Though after working all day it is so nice to get home and difficult to get the energy to go exercise but as you say, once started and you now enjoy it and it is part of your life. X
perhaps start off on a Saturday or Sunday until you find your comfy time going before or after work might tire you out at first. I go Sunday mornings when it’s quiet. My membership is £30 a month for that l get to use all the gym equipment, l now use the resistance machines which has improved my bone density, l can use the pool and join in with the classes. There are expensive gyms ie BUPA or Ballentynes but l would avoid them as can be a bit “posey”. You can do this! Best wishes.
Thank you so much. Have done some walking this week and 1 night I went for a swim! I really appreciate th support on here x
I take vitamin D especially this time of year, B12, and CQ10. And, I remember Dr. Jones mentioning CQ10 in one of his Q&A's being helpful with fatigue.
Interesting about the vitamin D. I did take this until November and it ran out and I didn’t think it had done much help, but thinking back now I am definitely much much more exhausted without it. Thanks.. will get some more. I read that the vitamin d in Tescos etc isn’t as good as buying it from a health store .. do you agree with this too? Thanks x
I’m sorry you are going through this. 💐
I take a nap every day. 🤷🏻♀️ sometimes several naps. I also can’t sleep at night, so if I’m awake after 4 am (it’s 3:40 now and I’ve been up since 2:15), I get up and go do my yoga and go on my elliptical. I don’t work, and honestly I’m not well enough to work, so I just go take a nap when I’m tired.
Exercise does help with fatigue. I have to get mine in early in the day, rest back up and then when my husband comes home from work, we walk our dog. Yesterday we walked almost 3 miles, but sometimes it’s only one mile. Then I cuddle back up in bed unless someone needs me
I don’t take any supplements, as my dr asked me to stop them. I can’t tell a difference in energy with it without them. I was taking Sam-e and milk thistle, but like I said I was asked to discontinue them.
Hi thanks for your reply. A nap during the day is so good. I get home from work at 4 ish most days and cannot wait for a nap. But this can be a deep sleep most days. I’m glad you seem to know how to manage your health ok with naps and know when to rest. Interesting about the supplements too x
try putting on some music good old Alexa helps me to get moving try one energetic song and then you could try another to build up even 5 minutes will make you feel better my favourite is Shaggy “wasn’t me” then a few old rock n roll classics. I’m 75 and have had PBC for almost 20 years so I have lots of favourite tunes to play and sing/shout along to which also helps
Hi biddyb I love this… love music too.. what a great idea. I used to be pianist in local hotel . Music is therapy for sure x
Glad to hear you agree hope that it helps you. Doesn’t seem like exercise to me which by the way I hate doing but love dancing. Give it a go you can then build up the length of time you can manage. There are some good routines also on YouTube if you like a bit more structure or just do what you want and give it your all.
Dancing is great exercise and can be social at the same time. I've seen on FB the Body Groove routine. Seems fun and no real way to do it that's wrong. Doing something that doesn't seem like exercise can make all the difference from doing it or not doing it. It is important to find something you enjoy. Give it your all! Love this .....
First off, I agree with everyone here who said don't be hard on yourself. Sometimes it all comes down to the Serenity Prayer. You gotta recognize the difference between the things you can change and the things you can't. If you have someone to take walks with, I would take those walks when you have the energy. You'll get some exercise and probably some extra closeness with that person. If family members have offered to walk with you, take them up on it. They will feel good if you let them help you. Exercise helps with fatigue but it doesn't have to be intense. Take it easier on yourself and don't see your fatigue as your failure. We really do have to accept the things we cannot change and work on those we can. Good luck
Thank you Sister65. This is very true and we can put too much pressure on ourselves. I certainly do and then when I don’t do what I expected myself to do, I feel worse! X
I have always been very much the same. Push myself and berate myself if I dont do what I expect of myself. Then a friend asked me how I would treat her if she was in my circumstance. The answer was, of course, with kindness and understanding. So why would I not treat myself with the same kindness? Not a new idea but it was new to me.
always try to be kind to yourself as you would be to any friend.... we all too often forget we need kindness from ourselves . We can put pressure on ourselves for sure. I know I do... and feel badly when I don't do 'something' regarding exercise everyday. Listening to our bodies when it needs to rest is part of it too....
I was diagnosed as vit B12 deficient last year. I have pbc and its hard to absorb vitamins. My specialist recommended vit d and was cautious that I have self treated with iron, magnesium,calcium b complex and vit D after my treatment for B12 was finished. It is OK to buy regular vitamins she said but don't exceed dose. She was worried about one or two that too much off can make you worse and exhaust you with too much.
However since the iron pills I have felt more energetic. It's trial and error. Do what's best for you. If a vitamin makes you feel good it's OK but if you start to feel worse ease off the supplements.
By the way in Britain because b12 can cause problems with too much it is only available on prescription. But b complex contains some traces to help.
I understand a lot of people on this forum take supplements as we don't absorb vitamins too well. Hope you get your mojo back soon, best of luck.
Thank you.. interesting about the iron. Definitely something to try.. thank u x
Just be careful not to take any vitamins or supplements you don't need. You can have your vitamin levels checked if you haven't already. Sounds like your doctor knows all you take and approves. For all of us, it's important to make sure our doc knows all the over the counter things we take. Some do not mix together well with other meds.
Hi Deemum
The dreaded fatigue , I do sympathise, I had to give up working after diagnosis, just couldn’t function properly without going to bed at 8.0 pm every night. Because you look ok people think you’re managing. The key I think is to pace yourself. The fatigue does comes and go. If you haven’t already joined the PBC foundation please contact them. They have lots of information on self care. I also seem to remember a talk about fatigue at the conference last year by Dr Swain I think. Very enlightening. Prof Jones’s book also has some practical tips - hydration, sleep hygiene, slowly build up exercise, sensible diet, get tested to make sure you have no vitamin/ mineral deficiencies.Best wishes
Thank you. It helps to know other people know exactly what it feels and thanks for the tips. I will get that book by Prof Jones. And good idea to check on vitamin deficiency. Thank you. I think the time has come to reduce my working hours. You’re so right, by looking the same, nobody understands the tiredness or the struggle for normal working and family life and the energy it takes. Take care x
The PBC app really does have so much great information on self care. We all need to take care of ourselves mentally as well as physically. I hope everyone has the app on their phone. you are so right about pacing ourselves... pushing ourselves will only result in more fatigue. We do need to listen to our bodies and that can take some practice if we are of a personality that 'has to do it all ourselves'. Glad you found Dr. Jones' book helpful.
Hope you are feeling a bit better and taking care
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