Weakness

Hi I have overlap AIH/PBC, and this year I am noticing that I am not as strong as I was this time last year. I am 50, but I don't think that is the reason for my weakness....does this mean my disease is worsening, and does any one have any suggestions on how to prevent further loss of strength. I am really frustrated becaue I cannot do everything I used to.

As for exercise...I swim and walk a lot, anything else is too much for me due to fatigue.

Thank you x

11 Replies

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  • I've been diagnosed with PBC since 1 year now. What I've come to realize is that fatigue can only be kept at bay with regular working out.

    But since you're already strong on that aspect; you might want to check if your exercise is being supported by adequate energy intake? May be you need to re-tune your exercise regime as per your physical capabilities!

  • Hi, Unfortunately most illnesses will sap your strengh . Although working full time I find that takeing rest thtoughout the day helps. I am also diabetic and find dextrose sweets help with the fatiuge....Please be careful and check with your GP before you try anything...

  • Hi conniefused, if you search this community for "loss of strength" - you will find several other posts about weakness. There was one a short while ago (included pain in legs and feet) - with about 27 responses. Not sure there is anything to really help but it might give some comfort to know that you are not alone - it helped me anyway!

    Take care

  • Hello Connie,

    I am the same age as you,diagnosed 7 years ago with pbc.I feel very much as you do and find it very frustrating.I do not have any answers unfortunately.I try to enjoy what I can and have reduced my working hours,that has helped a bit and means I can do things I enjoy if I am feeling ok.

    I find weakness and fatigue are for me the worst symptoms.

    Jane

  • I cannot suggest anything to improve strength. I think we just need to keep our selves in the best condition we can and you are doing that by taking regular exercise. Are you on statins? They apparently have an effect on strength. I am 64 this year had PBC about ten years and noticed reduction in strength but I have put this down to statins rather than PBC although sometimes what I read on here I wonder if it is another PBC symptom.

    Oddly one of the things that did annoy me was not being able to turn my mattress. Had a chat with my husband and we worked out the bed was 18 plus years old - now we have a mattress that does not need turning over just round - I can manage that. Got to be some ups! I now understand the old saying its no good getting old if you dont get crafty.

    best wishes

  • Hello conniefused.

    Unfortunately with PBC fatigue is one of the main symptons along with itching. I expect if you are also dealing with AIH too that could be additional strain perhaps. I did have fatigue and itching back in 2010, year of diagnosis but at some point during 2011 I was fortunate to lose the fatigue but I do get tired certain days if I've had broken sleep during the night that has been contributed to by itching.

    I am 51 in a few days and though I feel pretty good and in better shape than I did back in 2010 as I appear to have gone from strength to strength over time, not sure if lifestyle change or simply because my biliary system has recovered sufficiently with the urso over 4yrs. My bloods are still abnormal but not abnormally so. I still itch at night so I know I have PBC (in the early days I was convinced that I had something and nothing and that it was just through over-working and running around all the time but after diagnosis it did start to sink in).

    My theory is that we have antibodies that are supposed to be produced by our immune system that causes PBC, the anti-mitochondria antibodies (AMAs). I apparently was said to have 'a high titre' that gave diagnosis in Dec 2010. I bought one of my nephews a book for Christmas all about how the body works and I did glance through it and I did put a posting on here at the time about the mention of mitochondria cells and what they are. They are most prevalent in the liver. These are said to be energy cells so to me and my way of thinking, perhaps with PBC and anti-mitochondria present then maybe that somehow causes fatigue. Some on here have stated that at re-checks of the AMAs have shown none or little present afte diagnosis, some at diagnosis haven't had any present. I've only ever had the one check for diagnosis so I can't say. I somehow think that certain PBC patients whose bloods return to normal on urso perhaps might have negative results for the AMAs and their PBC may have slowed down but with this PBC no guarantee it'll remain that way.

    Over time I have found it harder myself to actually rise of a morning. I put it down to broken sleep and I can be awake for around 3hrs some nights and once I am itching then I don't seem to get much respite unless I do fall asleep. Some nights it isn't too bad but I hate being awake during the night these days. Pre-itching and PBC diagnosis if I happen to wake up in the night I could just lie there but those days are long gone.

    I rise of a morning and I am still on the go and busy during the day. I find if I sit down to relax I start feeling prickly though I don't itch during the day as such. Now we have the warmer weather here in the UK at the moment (I am in Lancs) I am making the best and half an hour with a lunch break in the sun for me is quite a boost though the sun can make you tired, I find for me it seems to recharge my energy for the rest of the day.

    At the moment if you are in the UK maybe it is that winter slump too as I certainly feel that adds to it all. Even healthy persons can feel that winter depression until the warmer months and the sun is raring to go.

  • I have a friend in hometown who has overlap and she seems to get more muscle problems tham me...fidgety legs twitching whereas mines more fatigue. I am 52 this think a little is age but mostly down to reduced ability to tolerate exercise.you are doing the right thing by swimming etc but its keeping the levels up....the less we do the less we are able to do so keep up what sounds like excellent work. I suppose you could gradually try to build up but its easier said than done with the fatigue! Think you should pat your self on back and not be too hard on yourself .x

  • I have been feeling tired loss of energy and strength and breathing and coughing problems so off I went to the gp who referred me to hospital for chest xray and low and behold they tell me I have lungs of a smoker and I havent smoked for nearly 40 years!

    So fed up I am, now I have lungs and liver not working properly grrrr

  • Oh dear Shirley you sound fed up and don't blame you. ...its bad enough having pbc without other stuff to contend with. Not telling a sob story but have multiple stomach ulcers (docs words) and gymae problems which really need op but can't have that as have portal hypertension so like you think grrr ...is a good way to put it.

  • Even a 30 minute lay down helps to recharge a little. Do what you have to do to get through. I got to finally have an Epsom salt bath and it seemed to rid my legs of the toxins that had built up. I advise you bathe in the morning as I spent most of the night peeing!

    But it definitely helped my legs be able to work.

    Good luck!

  • thanks for replies x

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