Fatigue : For me one of the worst... - British Liver Trust

British Liver Trust
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Fatigue

Maxey666
Maxey666
38 Replies

For me one of the worst symptoms of this horrible disease is fatigue. Mine seems to be pretty bad at the moment although I'm sleeping reasonably well.it makes me so ( swear word that rhymes with ducking) infuriated and frustrated in not seemingly able to finish something in the garden for example without having to take frequent breaks. I know to listen to my body but that doesn't help when you want to get on. Sometimes I feel like I need to stop,curl up in a ball and go to sleep. Grrrrrr....

Sorry. Rant over.

38 Replies
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1155Cat

I am with you on that ... I am always fatigued ... but I only get patchy sleep .. an hour here, 2 hours there !!! Ugh 😑 ... and my legs ache so bad, some days I think they will fall off my body !!! I am going to ask for Ambien again !!! I need rest !!! Hope you get some sleep too !! 🙂 😴

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Maxey666
Maxey666
in reply to 1155Cat

My legs also ache although cramping seems to have ceased at the moment. Guessing your GP prescribes Ambien? Mine is reluctant to prescribe any form of sleeping pills.

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Maxey666
Maxey666
in reply to Maxey666

Just noticed you're from the states.

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Oldham12
Oldham12
in reply to Maxey666

Sleep!!what's that?!? I usually get an hour or less re pain. Then every so often I will get a but more. Tiredness us just terrible. Take care Lynne

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Maxey666
Maxey666
in reply to Oldham12

You must be completely mashed all the time Lynne. You take care.

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Oldham12
Oldham12
in reply to Maxey666

Thank you so much. Everyone is so kind. Love and hugs Lynne xxxx

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1155Cat
1155Cat
in reply to Maxey666

Yes, he has prescribed me ambien ... works great too !! My leg cramping stopped when I put a bar of soap in a sock and put it between the sheets of my bed ... it works for me !!

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ThreeSmiles
ThreeSmiles
in reply to 1155Cat

Put the soap in a dampish sock and you could clean your feet in bed in the middle of the night. 😁.

Seriously though 1155 I have never heard of that one where did the idea come from?

Angus

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1155Cat
1155Cat
in reply to ThreeSmiles

I guess it has something to do with the magnesium in the soap ... look it up ... it works for me !!

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ThreeSmiles
ThreeSmiles
in reply to 1155Cat

Ok 👍 thanks!

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Filistines
Filistines
in reply to 1155Cat

1155 - my mum used a bag of wine bottle corks in her bed. She said it stopped the cramp. She was life-long teetotal, btw :-)

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1155Cat
1155Cat
in reply to Filistines

Interesting !!! I will have to look into that !! 🙂

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Rachel299
Rachel299
in reply to Maxey666

We got my dad some magnesium spray and he's said that helps cramps, his other symptoms are bad but at least the cramps aren't as bad in his legs after spraying them before bed. X

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ShropshireLass2019

Thanks for ups on soap and magnesium sprays! I will try anything that helps with leg cramps!

Cheers and I hope things improve for you

Love Trish x

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Cats2018
Cats2018
in reply to Maxey666

I just learned something new while reading your post and the comments. I did not realize that the leg aches I have frequently are a common occurrence too. I also experience fatigue. I don’t sleep at night all that well, but even if I do, I seem to be fatigued often. If I sit down in the afternoon, I’m likely to fall asleep in the chair. Sometimes I think I sleep better during an afternoon nap in the chair than I do lying in bed at night.

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ThreeSmiles

Hi Cats

I also get the things you mention

Fatigue - all the time

Sleep- 2 or 3 hours is the norm! Better than poor Lynne though ☹️

Napping - 2 or 3 times a day - my chair is my sleep inducer 👍

Leg ache. - all the time

Back ache - nearly all the time but severity varies

Hip ache - yes when walking

Well that’s a start for the sort of things I reckon might be generic for us all 😁

Angus

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Cats2018

I also have hip aches - supposedly bursitis. And upper right back pain

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ThreeSmiles

Oh dear cats. Most of us become bits of wrecks don’t we ☹️. But we have to try and maintain a glass half full attitude (not half full of vimto of course 😑) 👍👍

Angus

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Cats2018

Yes we do! 😊

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RonShirt

I told my liver doctor that I felt tired a lot of the time and he arranged a blood test which came back saying I was anaemic (lack of iron in the blood). So they've now arranged a colonoscopy and a gastroscopy to investigate if there's a problem with the of absorption of nutriments.

Good old NHS I say!

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Maxey666
Maxey666
in reply to RonShirt

Hi Ron

I was told I was anemic so long ago I cannot remember when. I'd forgotten about it. I think it was only slightly though.

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ThreeSmiles

Hi Ron

Good luck! Re the colonoscopy you will probably read how awful the prep drink is! In reality it’s fine just add strong squash to it and it’s really bearable then and it’s only the quantity that’s a challenge.

During the colonoscopy I had to keep sucking the sedative or whatever it is they give you 😁 then that is ok (ish 😁) 👍

Good luck with the findings!

Angus

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RonShirt

Actually I've cancelled the procedure now! I'm not feeling too good. Also they made a mistake so I only found out on Friday that they could do it on Monday! I used to use Epsom salts years ago when I was fasting .. I don't know why they haven't thought of that! Much simpler ..

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ThreeSmiles

If you’re not feeling too good isn’t it even more important to get these procedures done? I don’t know but did you talk to your Consultant about the situation?

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RonShirt

Well, I don't think it's very urgent, they'll hopefully just re-schedule. I have to have another MRI scan done next Friday, so I'm pretty sure I'll be OK by then.

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gertrudestein

I know what you mean about the frustration of not being able to get on with things. Luckily, I get a solid 7 or 8 hours a night but still need to have another lie down after breakfast. All credit is due to my husband who at this moment is doing all the Saturday chores and cooks dinner two days out of three. I am a keen knitter, dressmaker and needlepoint addict but haven't even got the energy to do those things. I do feel sorry for those of you who have work and family commitments as well.

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Maxey666

I usually last until early afternoon but have to keep stop / starting before having a lie down on the bed. At the moment I'm working from about 0815 to half past one 3 days a week but I couldn't imagine doing anymore hours just yet. As soon as I get home I just flake out.

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Bjw7

I too suffer from severe fatigue, I'm from the states. I have several diagnoses, non alcoholic cirrohisis, hereditary hemachromotosis, along with type 2 diabetes, severe peripheral neuropathy, and more. From the time I get up in morning I'm exhausted. Few hrs sleep here n there through the night, take frequent breaks through out the day all day. I get so tired of being in pain and fatigued.

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Bootandall

Fatigue is my worst symptom too. I would like to return to work but just don't have the stamina. If I get through a couple of late morning (because I am not alert enough for early morning) errands or appointments, that is a very busy day for me and I am wiped out, need a nap. I will sleep all night, and still take 3-4 hour nap in the early afternoon. I'm not getting nearly enough done in the house! Dishes and maybe the bathroom and the occasional load of laundry is all l can muster, I can do them all in spurts, not all at once. It is a massive problem for me. And now I'm getting leg cramps as well. Hope that's just from walking, which for me is a short distance down hill and back up. I miss the social aspect of hanging out with friends, too tired to do that either. I discussed it with my gp and she said that she wanted me to do a sleep study, and is testing my thyroid. The liver specialist says that it's common, shrugs it off as part of the disease.

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Maxey666
Maxey666
in reply to Bootandall

I know exactly how you feel. It's just the inability to have anything in reserve.

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ThreeSmiles

Hi boot

I got shrugged off so many times about inability to sleep (you have both problems in turn don’t you ☹️) I gave up mentioning it 👎🏻.

Angus

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Filistines

Maxey666 - I think you hit the nail on the head. Nothing in reserve. That's exactly it with liver disease, no stored energy to call on. So it does mean we have to rest, wait and notice when that feeling comes back that we can carry on. Don't waste energy regretting what you can't do. Pamper yourself with a guilt-free rest til you can do. Others may not understand or think we aren't trying but we know different and we mustn't beat ourselves up over it. Do you get Vit B12 shots? They help me.

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Bootandall

Where do you get those? Tbh the only time l heard of them was in that Rod Stewart song lol. I hate shots, but if it helps...

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Filistines

What song was that? I get the shots from Doctor. I'm pretty sure it will cure you of hating shots. I'm always eager for another. Some say they're not prescribed it and they buy it themselves. There's 3 forms, the best assimilated, and more expensive is methylcobalamin, the activated form. Hydroxycobalamin, I have it, needs to be converted by the body to methylcblmn and this takes two or three days to take effect. Then there's cyanocobalmin - least reccommended. I believe that the silly thing about prescribing hydro or cyano is that it requires the body's own methyl to convert it. People who need it are deficient in methyl. But it's cheaper. I definitely feel a bit meh for two days after a shot, but not worse than before I first started to get it. It varies how much a person needs - I was prescribed it initially 3-monthly after loading doses of every day for a week, but it was clear that I needed it again after 3.5 to 4 weeks. Before you do a sleep study, try raising your bed/upper body to sleep. Let me know what happens. :-)

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Maxey666
Maxey666
in reply to Filistines

Hi

I have vitamin B tablets that I take. We just have to listen to our bodies I guess.

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Sillymo

Hi I have not been on for a while. Been very unwell plus having my DLA stopped and having to claim PIP. At the moment my fatigue is at all time high. I can't do even the simplest tasks like making a hot drink. I feel like I have the worst case of flu ever including sweating and shaking. I hope you feel better soon. ❤

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Maxey666

You too Mo. My thoughts are with you x

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SteveM99

My other half has AIH and suffers fatigue when the weather turns warmer, but it is the humidity that is the worst part of it. Also, here in the UK we dont have aircon in houses so difficult to cool houses down!

However, a while ago fatigue was a constant battle, and problems sleeping at night due to legs. Blood test was done to check Ferritin levels (haemoglobin and blood count seemed OK). Ferritin was too low, iron tablets prescribed and this made a huge difference.

Doesnt hurt to have these things checked out, if this might be of any use to you or anyone else!

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