Hi there everyone. I suffer with cirhossis, due to see hepatologist next month but just wondered why especially in the mornings my legs and feet seize up making getting out of bed an ordeal. I walk like a plank of wood. If I sit down for too long I get pain in my hips, legs and back but recently getting out of bed to go to the loo in the morning Ive been lucky to get there as my feet dont work. I take morphine which Ive been told is the safest for me but it doesnt touch it. The frozen foot issue is the worst. I live with the other symptoms cirhossis gives including just having had varicies banded. Just wondered if anyone has similar or has any ideas. Im not overweight and don't drink alcohol anymore.
Thanks
jules
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jules45
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I used to get cramps in just my feet on and off and didnt look into it at the time as it was bearable and lasted just a minute or so...since then my feet are unbearably painful and have been for over a year with just a fingers pressure on my soul hurting . I started looking into it and drew a blank almost till a person on this site advised me it was the sensitivity of my feet at fault, I wear 2 pairs of socks, very thick slippers and padded bandages and i still sometimes limp. I didnt know morphine was considered safe for a cirrhosis sufferer. Is it prescribed by a GP? I was in so much pain once with my stomach i was taken to A and E and the staff where very careful to give me a small amount of morphine at a time to be on the safe side but it seemed to do the trick. Ive only had morphine that one time at the hospital but i,m told its addictive and not very effective in pill form. I smoke cannabis every day as a substitute for alcohol and it works in that respect for me personally but It has never reduced pain though so i wouldnt recommend it for your feet.
Hi, thanks for your thoughtful reply. The morphine is prescribed by my GP in liquid form and I agree its addictive but at least its not alcohol I tell myself. I had real difficulty getting out of a car today and walk like a person twice my age, but like you its the whole thing - feet worst. I remember when I was in hospital with my first liver failure there was a lady with the same but in a worse state than me and the nurses kept checking her feet and I used to wonder why at the time. Could it be Ive heard that cirhossis causes damage to the bone marrow? I agree the pill form of morphine isnt that good and the liquid works fast but doesnt last long.....oh well at least I know Im not on my own with this. Hope you get on ok with your ongoing illness. We battle on!
Sounds familiar, Jules. I didnt think of using something prescribed by a gp. I smoke weed as a substitute to alcohol and its worked so far as i,m still sober, but, i dont think its any good for pain relief no matter how much you smoke. thats just me though, ive heard others use it for back pain? Is morphine something rehab places use now instead of Librium? Didnt think there was a choice
Hi again, I was given diazipam supervised 24hrs to come off drink, although librium is used for detox only. I got morphine as I was told, which is true, that I cant take anti imflammataries, paracetemol, certainly not Voltarol, codeine makes me sick, Ibuprofen makes me bleed and other pain killers due to my delicate holding its own liver. Morphine isnt used for detox just for pain but you need the doctor to realise that your liver cant take normal pain relief. See how you get on, keep me posted.
I have cirrhosis and autoimmune hepatitis. My feet are really stiff in the morning and after sitting in the day. I have roving random aches and pains all the time. It's the AIH that causes this in me, not the cirrhosis.
Hi bolly, thanks for your reply. Can I ask you what AIH is. Is it Auto Immune related. Sorry to ask but I don't know much although Im learning more by being on hear and reading peoples stories. I was told that Alcoholic Hepititus/cirhossis (I dont drink anymore) causes damage to bone marrow. I asked once why I was covered in red blotches all over and thats what I was told so Im thinking perhaps wrongly that it causes my bone pain
Im getting a list of questions ready for hepatologist!
AIH is autoimmune hepatitis. Its when the immune system attacks the liver. I've never heard that ALD/cirrhosis damages bone marrow, thats a new one to me! There are drugs people take for AIH that lower the white cell count, but thats not the same as bone marrow. Are you sure the red blotches were not an allergy to something. Some people with cirrhosis get spider naevii on their skin which are red blotches.
Hi bolly, I was told in hospital that alcholic liver disease (now teetotal) and cirhossis does damage the bone marrow. Some of mine are spider naevii - no alllergy - I asked if the blotches would go and was told then about the bone marrow. I'll ask the hepatologist when I see him for 1st time next month. I know my platelets are extremely low and always are
Thanks Julie, I learn new things all the time on here! Wouldn't that tend to mean many people with cirrhosis would get leukaemia. Or does it just mean some of the white blood cells are affected I wonder.
Hi Bolly, I think it just affects the blood in general. I was told after a long period of no drinking that the bone marrow would recover. I wouldn't worry about leukimia, if I thought that I'de have asked straight away. I will ask though if the bone marrow does recover and how it affects different aspects of blood chemistry. Im starting my list for the hepatologist already and Ive got to wait until 14th Sept before I meet him for the first time. Up until now Ive been under gastroenterology. I just pick things up that have been said to me over the years by various doctors and sometimes remembering can be useful. Like you, I wonder whats what. Hope you are feeling ok today
I have pain in my feet and legs too, though I don't think what I suffer is as bad as the others who have responded. I do "hobble" a bit on rising in the morning, and when i get up after a long spell in a chair, office or lounge chair. Not sure what it is though, but for me so far it is manageable. I have "borderline" cirrhosis, from NAFLD.
Hi Taar, mine was manageable but over the last 2 months its terrible. I live on my own so havent got anyone to help me out of bed. Im only 45 and feel 95. Perhaps if you find out let me know and vice versa. Seems to be a few people with liver problems that have issues with joint pain. I'll either wait to see hepatologist or see my GP. Theres a condition I googled callled
fybromyalgia (spelling a bit dodgy). Worth thinking about.
I am new to the forum. I have just been told recently that I have some cirrhosis of the liver. A couple of months ago, I had severe cramp in bed which woke me up only to discover that my ankle and right leg were a bit swollen. Since then I have been trying to walk a bit everyday which I am told does help. I am also not a drinker (only in moderation) and do not smoke. I always thought I led a healthy lifestyle and found it difficult to come to terms with it. I was supposed to have a full hysterectomy recently which was cancelled due to the liver problem. My leg feels a bit stiff in the mornings and sometimes cannot walk on it for a while until circulation comes back. I am still unsure yet whether the reason I feel tired is the liver or the cyst which they have found, thankfully is not malignant. Like Jules, an endoscopy revealed a fine column of varies in the lower oesophagus which disappeared off the screen once air was blown into it. They seemed confident that it was not too much of a problem. I would like to know what happens when varices are banded. Can anyone advise? I will also have to have a liver biopsy and would welcome any thoughts on these. Next month I am also going to see the herpetologist for results on recent blood tests.
Hi Jane, read your post a few times and you have various problems which I can sympathise with. I can't have my gallbladder out due to my liver so I can relate to your problem with your hysterectamy. When I had my varicies banded in May I was offered sedation which required someone to be home with me overnight, or a throat spray that is like an anesthetic. I chose sedation, it was done down the throat and the whole thing took 10 mins. Not pleasant, but very necessary. I haven't had a biopsy yet so don't know about that. After the banding I felt uncomfortable for about a week eating soft food only but now I feel fine apart from swelling in my stomach, ankles mainly in hot weather (swelling nothing to do with varicies as Ive had it before - swelling due to cirhossis) Been to doctors about swollen stomach and my ankles and feet and just got fobbed off and told to wait until I see hepatologist. I hope you get some answers after seeing your hepatologist and we can swap notes!
Julie did the GP not check if the swollen tummy was ascites? With varicies and oedema already it sounds like ascites could be a possibility. In which case it needs treating with diuretics which would also help,the swollen legs, ankles and feet.
Hi thanks for reply. Have had ascities before and sure having a stomach like Im 9 months pregnant would have alerted GP. Have been on duiretics for 5 years since my liver first failed and she just increased dose which never works. The tablet name is Spironolactone, now taking 100mg and Furosimide 40mg for fluid. Once she found out Im seeing hepatologist next month just sent me packing without doing anything more. Took a water sample with me and when she tested it asked me if I was on a special diet. I didnt think to ask her why she asked that at the time, only when I got home I wondered about that. Just got to suffer until 14th September and see hepatologist. I avoid salt, and junk food and try to live an independant life but Im fed up of looking pregnant. Last year GP tapped my stomach and detected fluid but by the time the scan appointment came through there was none there. My stomach tends to expand to the left side below my rib cage and up and outwards below my armpit all across the front. Self confidence can suffer as a result. Hope you are well today, how are your symptoms behaving at the moment
Hi julie. We hear from many people who feel let down by their GP. I guess part of the problem is the GP is not a specialist in liver disease so cant offer much in the way of treatment apart from carrying on with what your hepatologist/liver clinic prescribes. I know my GP doesnt make any decisions over treatment without contacting my specialist first, and would definitely not prescribe or make changes to any medication or suggests a procedure without checking first.
What is the situation being asking for an ascites drain? If it gets unbearable do people have to turn up to A&E if they are not 'booked' for one by their medics.
Hi, thanks for reply. The procedure would be where I live in a rural area that I would have to become extremely bloated, breathless and just turning yellow (from past experience) to justify going into A and E which is an hour and a half away to be treated. You have to be nearly at deaths door to even get a out of hours doctor. I agree with you about GP, its as if their hands are tied. I had 8 litres removed 2 years ago and only got admitted because I ended up phoning 999 as I couldnt breathe. Stayed in hospital for 10 days with liver failure. I wish I lived near a hospital. Never mind, keeping positive is my motto at the moment and your replies have been nice to read.
Thanks for the information. I am sorry to hear of your problems as well. Last weekend, I collapsed in the park with abdominal pain, still don't know if this is endometriosis pain or the cyst which is in the right ovary. I stayed one night in hospital, had blood tests and pain got better. I have only just been out today properly for a walk but it left me feeling vulnerable and wobbly on my legs. I am not working at present which is probably just as well but you do tend to start dwelling more on yourself plus I don't seem to be able to eat as much as before. Perhaps this is just a nervous thing. Anyway, it is just one month to go. I was told there was a fine column of varices which disappeared when they blew air into it but will know more in September.
Will keep you posted once I know. Thanks again for your advice and glad to hear that you will fine now apart from swelling. I suppose we will just have to live with it.
Hi jane, can sympathise with the cyst as I had a 12 cm one on my ovary about 8 years removed. I was in agony before operation so that could have quite easily have caused your collapse. The pain in your side with a cyst is appalling. Have they scanned you to see how big your cyst is as it should be taken out with keyhole surgery. I imagine your confidence has suffered a bit with not being able to work like mine has. I try to go a walk each day, just to town but there are some days I simply don't feel up to it.
They have scanned the cyst which I am told has grown to 15cm in diameter but I need to check this out with my consultant tomorrow. He did not mention about keyhole surgery because he said the only way to take it out is having a full hysterectomy due to the locality of the cyst. I have alot of questions line up for him, all written down. Have been taking a tonic for the last week and for some reason I don' t feel as tired as I was but need to still take things easy. I do plan to return to work but this may not be till new year.
Sorry to hear that you feel the same. I have been doing breathing exercises which might help you as well. Since I collapsed I developed this cough and I think is nervous tension so am looking into what I eat. Have cut out wheat and salt as I am told this is not good for liver. It is difficult to know what to do sometimes for the best but I am keeping a positive mind.
Hi again, gosh, 15cm is a big cyst. Im glad youve written a load of questions down because a hysterectomy is quite radical to say the least. Mine was on my left tube so had the ovary and tube taken away. Mine was supposed to be keyhole but ended up with keyhole then turned into a cut all along my stomach. I then had the obvious problems of not being able to lift etc due to him cutting through the muscle. I wasnt a happy bunny being told it would be keyhole and a day case. I was in for a week! That was all before my liver started giving in. Keep an eye on the breathlessness/cough as you could have a chest infection or some stuff built up on your lung. We are susceptable to infection due to our immune systems being a bit delicate. I have trouble with food so I keep a bland diet and Im vegetarian. I eat porridge if I feel dodgy, started gluten free bread as I have gastritus just diagnosed and I dont eat enough protein which I know is bad. I didnt know wheat was bad for the liver - Im learning new things. I know oranges arent good but cant remember who told me. Im almost feeling nervous for you for tomorrow and I sincerely hope that you get sorted out as you have many health issues so between us we can keep positive and swap notes.
Hi, thanks for reply. I'm vegetarian but can't exercise due to degenerative spine disease and a bulging disc, all just diagnosed. I can't stand upright at the moment.
I've got this where even getting off the toilet is difficult, I got stuck in the bath the other day as no one else was home and my legs wouldn't work has anyone been medication for it? X
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