Extreme fatigue cirrhosis

[wilmawemyss]

How do other people cope with extreme fatigue. I can sleep all night but still suffer from extreme tiredness. Do I rest or try to force myself to do something. Have to keep taking a break in between.. Some days slightly better but most of the time suffer from sleepiness and tiredness. Find it so difficult to make any plans. Any advice anyone can offer me.

[AyrshireK]

That is a usual pattern for my hubby - he can have a disturbed nights sleep and function not too badly or he can have a full nights sleep (very rare) and he'll be wiped out all day. You can't plan you just have to do the best you can. Hubbie has lived that life for 10+ years.

Exercise is essential even though it might feel totally contradictory when you feel so rough but doing some exercise really invigorates you both physically and mentally. Even a short walk round the park.

Sometimes you have to do something but also listen to your body and if you need a nap have one but don't lie down to this illness - don't let it defeat you.

My hubby suffers chronic fatigue - it's always been the main symptom of his illness. Yesterday he felt rough but he still got on his cycling gear and we went and did a 37 mountain bike ride on our e-bikes. Yes he was shattered all the way round, had to fuel loads BUT he returned tired and happy. He could easily have sat at home, lay on his bed and what would that have achieved but another wasted day.

You have to live your best life. Ride the roller coaster - the good days and the bad - the ups and the downs.

Katie

[Murffie68 in reply to AyrshireK]

I agree that exercise is key. I feel that I can shrug-off, to some extent, the feelings of fatigue, via exercise. It is a challenge to push through the fatigue, to overcome the inertia; no doubt. Conversely, strange as it sounds, I have also found the fatigue relaxing! Because I have been hard driven all my life, and I'm now retired, I can just let go and enjoy the fatigue as relaxation...weird, huh?

[AyrshireK in reply to Murffie68]

Hubby describes a good day as merely exhausted whereas a bad day is basically a right off. He can often push on during a 'merely exhausted day' but on a bad day he doesn't function well either physically or mentally and will have to literally as he says it 'drag his weary body round'. In the early years of his diagnosis most days were the latter type and he required daily bed rest - often only waking when I called him for his meals. The change in him is fabulous.

The cycling though has really boosted him, prior to becoming ill he had been a long distance walker who took part in many challenge walks of serious mileages so cirrhosis robbed him of that but the cycling has given him back that drive and allows both of us to venture further and still get out into wild country. We are not long back from a month long caravan trip in the Highlands of Scotland where we did over 300 miles on our e-bikes and out into some really wild country in the NW of Scotland and also in Highland Perthshire.

We live on the edge of the Galloway Forest Park so are able to access the Galloway Hills with some ease and have done some cracking bike rides there of late.

Keep pushing on. It's the only way.

Katie

[idyllic420]

coffee helps me in the morning!

[Oscar21]

This is a major problem for me too. Some days are worse than others. B12 have made my life much more bearable, before I was prescribed it, the fatigue was so much worse. Perhaps you could ask your GP to check your levels.

[Lola1977 in reply to Oscar21]

What form and how much do you take if you don’t mind me asking?

[Oscar21 in reply to Lola1977]

Hi. I take Cyanocobalamin 50 mg. One tablet per day.

[Beachgirl77]

I also have a problem with fatigue. I have to force myself to go out for a walk but I do feel better for it. Some days better than others but very hard to plan things in advance.

[Aotea2012]

I love lemon water, it’s so refreshing and I think must have cleansing qualities. Just a word of warning on the iron supplements. It’s best to check with your GP before taking. I have cirrhosis and had some problems for a bit with anaemia. All sorted now, it was to do with nosebleeds which weren’t liver related and have been sorted out. I had a long conversation with my GP and he referred me to a haematologist for a quick check up. I had iron infusions for a month and then a short course of iron supplements. My anaemia resolved once my nose was cauterised. Both told me they were being careful with the iron because it can cause liver damage in someone who already has liver problems. So was very much under medical supervision whilst taking iron supplements. A chat with your GP is probably a good idea....he may be able to prescribe what your taking or something else, to save you having to buy it. I always run whatever I’m taking past my GP first. It’s just a phone call to the surgery and they always come back to me with a yay or a nay.

[Nevergivup in reply to Aotea2012]

Thank you for your advice.. I also had an iron transfusion due to iron deficiency .I've only started taking it recently as blood test showed platelet problems. My skin and blood was really thin and I would bleed and bruise easily and wouldn't stop bleeding. I did ask pharmacist if it was OK for me to take. She told me that it was a weak dosage with b vitamin plus lots of others and not to exceed the 2 tsp a day. So I've only been taking 1 tsp a day and hopefully it won't be for a long time and platelets will improve.

But yes I should ask gp about it really and I will do now as I don't want to make matters worse.

Again thank you Aotea 👍

[Aotea2012 in reply to Nevergivup]

Yes platelet problems are common in cirrhosis. I’m fortunate as I’m well compensated and mine are now normal, but they weren’t when I was first diagnosed. A good diet helped me. Hopefully you have a dietician, if not try to get one. I was prescribed vitamin supplements...multivitamins, thiamine, folic acid and strong vitamin b compound to start. My diet was adjusted to include a lot of green leafy food like spinach. I was also told to eat wholemeal bread and eat fish, like salmon, a couple of times a week. I still take my multivits but these aren’t prescribed anymore and my GP said I probably don’t need them as my diet is well balanced for my needs, but taking them isn’t dangerous. I don’t take any other medication these days. A dietician helped me plan my diet which has gone from high calorie, high protein to a high protein Mediterranean diet in the last year. My liver has recovered sufficiently to reduce my calories ( I needed to as I was putting on weight!)

[Nevergivup in reply to Aotea2012]

Yer I did have a dietitian in hospital tell me the same thing, but also told me I was aloud up to 5 grams of salt a day. My liver consultant had a right go at me for eating anything with salt. The dietitian showed her leaflet about dos and don't on cirrhosis, and it stated it in there that it was OK lol. I was only having a little here and there and not even day coz spirolacton tablets was stripping all the salt out my body and i was constantly getting really bad cramp everywhere. So painful, never felt nothing like it.Consultant does my head in, I had ago at her because the food in hospital was full of salt to the extent that was all it tasted of at times. She really replied the canteen is on a tight budget. What joke lol. I hate the place, I've only got cirrhosis coz I had major surgery and a blood clot traveled to my liver and killed half of it. It was fine b4 op as the hospital checked liver was OK b4 my op.

You couldn't make it up lol.

[Aotea2012 in reply to Nevergivup]

Oh dear. No salt is a no no with cirrhosis. The problem is that the liver doesn’t perform all it’s normal functions when it’s damaged. Things like the processing of albumin. Albumin keeps the fluid balance in the body normal. When it’s out of kilter then fluid builds up and diuretics like spirolacatolone are necessary to remove the excess. Limiting salt also reduces the fluid build up. It’s amazing how much salt there is in everything. Even some tablets have a high sodium content. So it’s important to limit salt to about 2000 to 3000 mg a day. About a teaspoons worth. So not a lot.

[Forestwalking]

I was born hepatic agenesis , serious liver problems and several surgeries since aged 21 am now 56 with cirrosis. I suffer exhaustion daily but I make myself move, cycle,walk or garden( slowly) and I feel better and happier for it.( I am always exhausted!!!!) I have a good life and the days that I am in pain and nauseous I take the meds and spend the few days until the cholongitis passes watching tv. When inflamed, I suffer two or three days a week.I have just recently retired from teaching as I decided on a different lifestyle but as you can imagine working with30 kids everyday for 8 hours.....well that's another level exhaustion but I did it for 20 years. As already mentioned.....don't let your liver dictate your life, it is hard but check your vitamin levels, drink lots of water and eat healthily. All things we are in control of, I found the advice on liver trust regarding diet very helpful.

[Elric1]

I was like that & I started doing the Wim Hof cold shower s & slowly got better . All I can say it worked for me I did it for a year approx 8 minutes cold shower. I now have more energy Good Luck hope this helps John

[oap74]

It’s a very difficult situation to be in. I myself cannot walk far at all due to poor circulation in my legs just pottering around the garden is a challenge. I’m having a scan tomorrow to see if it can be fixed by stents. So until you can solve the mobility problems it’s a bit of a catch 22. All the best for the future.

[Puggypip]

I'm permanently exhausted. Just working 10/15 hours per week is a real struggle. My anaemia doesn't help,light headed and my H.P comes and goes,NOT helpful. Do what you can when you can. Listen to your body,you know it best! My partner really struggles with my condition,you can't understand it if you've never been in that position....how ever much he tries.

[NorbertGrubbins]

Hello - I just joined here precisely because I am often exhausted beyond belief, my hepatologist says it isn’t because of my cirrhosis (compensated alcoholic cirrhosis) but from my reading elsewhere it seems that lots of people do. It is reassuring to see that others struggle, and i am really sorry that you do (I never wanted to be in a gang, and certainly not one dedicated to lying down feeling awful). It is interesting to see the range of responses to the original post. I work in health communications and one constant feature i see across medical care is the gap between patient experience and medical management, and boy am i feeling that at the moment. So just writing this here is a huge help (sorry to hijack the thread). Am on lactulose, which brings its own problems about needing the loo, sometimes urgently. Some days i can barely get enough sugar and others i feel like i have drunk bleach. but tests always come back ok. And i nearly always need sleep from the afternoon into early evening. Working as a freelancer means i can be flexible about work, but my abilities are falling away, am increasingly limiting hours, and that scares me. It isn’t great for my partner to find me asleep when she gets home from a busy and stressful job. But as we both recognise, when i was drinking 6 bottles of wine a day the result was similar (I am sorry to say). perhaps this is a living example of a personal hell. I know we are all products of complicated life stories, settings etc and we each experience things differently, but it helps to know that this tiredness is something sitting on top of other people and that I have to find my own way through. Thank you for reading this

[ballie52]

I also have been complaining for the last 2 yrs to my consultant of chronic fatigue !I guess it's part of having liver cirrhosis as the liver is struggling to perform all of it's functions and being damaged with having cirrhosis doesn't help!

I'm coming to the conclusion that you just have to accept it's part of the problem of having liver disease!

Just trying to pace yourself and take a rest if needed is all you can do really!

If exercise and diet changes help then that's a bonus!