Feeling very fatigued and horribly anx... - British Liver Trust

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Feeling very fatigued and horribly anxious

JackMcG profile image
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Hi, I'm new here and this is my first post. I have hepatitis c. I found out in August last year. I was told when it was first diagnosed that my viral load was very low and there was some hope I would eliminate the virus with my immune system. Just after Christmas I started to feel really awful. I felt weak and shakey, almost like I was hypoglycaemic. I struggled to eat and felt horribly anxious. I would get anxiety attacks and even though I knew they were anxiety attacks I had no power over them. Life became so difficult and unpleasant. I just felt awful all the time. I saw the liver specialist at the hospital and was told my viral load is now very high. During an ultrasound it was discovered that I have what was described as a large calcified mass in my gall bladder. I've had a preoperative assessment and I've been told I will have surgery befor September. The horrible way I was feeling eased off for a few weeks. I still didn't feel great but I didn't feel unremittingly ill. In the last couple of days it's come back with a vengeance. I feel so sick when I wake up in the morning and retch heavily. I'm either constipated or have diarrhoea. I have a constant ache under my right rib cage but I don't know if that's my gall bladder or liver. The anxiety is back with a vengeance. I'm seeing my GP tomorrow. He knows I have hep c. But I'm worried because I'm not good at describing my symptoms and I've never been able to get him to understand how awful the anxiety is. I'm due to start on sofusbivar and ribovirin in a week. I'm worried about this as I've heard it can make anxiety worse. I've also been experiencing a pain in my chest, that feels like it's in the top of my lungs. I'm sorry this is a lot of information. I really don't know much about hep c, I suppose I'm looking for some reassurance. Any advice or knowledge, experience anyone could share with me would be greatly appreciated. Sorry for writing so much. I do appreciate anyone taking the time to read my comment. Thank you.

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grace111 profile image
grace111

you have similar to what i have. i have had hep c and cleared the virus. at the moment im waiting for a very large operation as i have a large calified stone in my bile duct. i went into hospital in april to have my gall bladder removed and it was found to have shrunk to the size of a thimble and it should be the size of a pear. its also stuck onto my liver. also 1/4 of my liver has atrophied and shrivelled up. they could not find the stone at that time although with an altrasound it had been seen as one stone which is 24mm thats just over an inch in size. i went for an mri ct scan and they saw the stone inside my bile duct. they tried to do an ERCP which is a tube down the throat and wires into the tube and they try to knock out the stone out of the bile duct. but they could not remove it. i had gone into hopstial in an ambulance in terrible pain and sickness when they did the ERCP the they said i had mirizzi's syndrome. im to have a 3 hour operation and they are dont know the shape of the stone in my bile duct so they may have to cut away all of the bile duct and reconstruct it, i can tell you i am not looking forward to this. you have had terrible news and its no wonder you are feeling the way your feeling. iv been in the hospital 3 times in less than 3 months. and will be going in in a few weeks for this operation. what you can do is write down this post and hand it to your doctor or similar to this post and she will read about your anxiety and your pain under your right hand ribs. this is where the gallbladder pain comes. if you read my bits about me post you will see that i also say i dont know if the pain is my liver or my gall badder. i also felt very ill when i had hep c its a lot for me to write down but if you want to read it you can see it in my bit about me as im just out of the hospital yesterday where i was found to have a bladder infection.. it was very very painful and i had to suffer a lot of pain while they grow the bacteria and find out which ant biotics to kill it with. i did get oramorph and it helped a tiny bit also they put my on a lot of anti biotis as i had a build up of poison from the time i needed the ERCP. i meant to say i have a stent in at the moment to let the bile drain out of the bile duct. im sorry if this is all over the place but im not well myself and i just wanted to let you know that your not alone,there are many times i have lost my appetite and felt really ill and then it passes and there have been times inbetween when i have felt ill again just as you are describing i also have the pain in my chest sometimes its all over sometimes the right side or some times the left side and i'v even felt as though my ribs were getting cracked also a pulling tugging feeling in my right hand side its called upper quadrant pain, urq for short. as its a lot of typing. have faith jack there are many people before us who have had this and we are not the first so the doctors know what they are doing . are you on a hep c forum as thats a good place also. i felt so much better physically when i started the hep c treatment it was the way it affected me mentaly that wasnt good but i was on ribovarin and interferon and i was geno type 3 that is also said to be one the can go to fatty liver. im sorry i dont know all the medical terms and my spelling might be terrible as well but im sure you will know what im saying and thats whats important,i also have fatty liver and im only 9 stone and just over 5.2 inches so im not fat. i hope this is some help to you and im always here for you i just hope that you will feel better on the treatment. as i did. all the very best to you. xxoxxoox

JackMcG profile image
JackMcG in reply to grace111

Thank you so much for your reply Grace. You gave me a lot of information that has actually put my mind at ease a bit. You've given me really useful information. I will read your posts. You must be feeling pretty ill your self. Thank you for your reply. I hope you feel better soon.

grace111 profile image
grace111 in reply to JackMcG

its a pleasure to be helpfull to anyone i can jack and im glad you found some comfort. when i said write down similar to the post i meant your own post as you explained everything very well.

grace111 profile image
grace111 in reply to JackMcG

i also forgot to tell you as you may not know that we need a very special diet for gall stones it must be very low fat as our gall bladder is compromised. no cheese creams or fatty foods. in fact you need to look up a gall stone diet on google as this could be what is causing you much more pain, i know if i eat cheese on toast even with a little cheese i pay for it. we must eat things like chicken with skin of and fish no butter or margarine's or we must use very low fat spreads. before i found out i had gallstone i was in so much pain with the foods i was eating as i didnt know,

JackMcG profile image
JackMcG in reply to grace111

That's very useful advice, thanks. I've been avoiding greasy foods, but I didn't know about avoiding cheeses and butter. I will cut that stuff out immediately. Thanks once again Grace.

Pateo profile image
Pateo in reply to grace111

Thank you both Jack and Grace for your appreciation.

It is true that large amounts of oils and fats will cause the gall bladder to contract and give pain if you have large, obstructive stones.

That's especially true of fried foods and oily salads; BUT I repeat, you must be having some essential fatty acids incorporated in your diet to maintain a healthy brain and nervous system.

All fats are not equal, there are "bad" fats and "good" fats and you really need to research this yourselves;, but we have all, I think, heard about Omega 3, 6 & etc Poly unsaturated fatty acids, the good fats and the bad fats , trans fats, hydrogenated oils and so on.

The human brain is about 75% water and the rest (the "solid" part) is 60% fat.

The point is the body will use whatever is available, so if your fat meagre diet is full of e.g. nasty trans fats, that will go to and impair the nervous system whereas if the diet has only good fats, likewise they will be taken up and go to healing of the nervous system.

The point is there is, so far as I know, NO WAY you can have a fully fat free diet and it is essential for your general health and hence post-op healing that you ensure that the fat contents you do absorb are GOOD fats.

That means no junk food and only healthy whole foods, preferably organic. Personally I would class so called low fat spreads as junk food....the fats they are made up with will generally be synthetics of one variety or another.

Only individuals can find out for themselves what they can tolerate or not and I don't mean to say like you have to drink a tablespoonful of Olive Oil.

Simplistically I would say that less (grass-fed/organic) butter is better by far than more "low fat spread"

All the more because your body is fat-hungry due to the restricted intake, you do have to be all the more careful about exactly what kind of fats are ingredients in whatever it is you do eat.

I hope that makes my meaning clearer.

Best wishes to you both.

ps. I am today on the last day of 3 month antivirals for Hep C, the viral load has dropped right down from very high to very low, hoping that tomorrow's blood tests will show zero load.

I have an appetite for the first time in years and have found a core point of wellness amounting to a positive attitude.. a grey mist has lifted; but I do have M.E. rather badly and that hasn't changed.

Nevertheless I am more able to initiate tasks where before everything was too much bother to get started; importantly in managing M.E. I also know when to stop...having a fertile imagination and many projects on the go at once this is very, very important.

grace111 profile image
grace111 in reply to Pateo

that is great news for me to hear that you are at the end of the road for your hep c treatment. and i hope that tomorrow you have indeed cleared the virus. im so glad to hear that the grey mist has lifted as i know what thats like as im living with it myself. i am so pleased to hear also that you are able to do tasks as it also give us a feeling of empowerment again. and gratitude. i know that because i have been and am so ill myself it really gives me hope and pleases me to hear that someone else is getting better.

i have been thinking about your post for a few days and it stuck in my mind. so thats why i came back to thank you and read it again as it makes so much sense. most of the food i eat is organic. and if i do use any fat its a little olive oil. and i eat a lot of organic mushrooms and brown rice also i grind up organic flax seed and organic sunflower seeds and organic almonds and put some of this into my organic porrige. everyone thinks im mad because i want all organic but i watch a programme of tv recently called panorama and it was about the anti biotic epidemic and people are resistant to many strains of anti biotics as they are giving them to the cattle and poultry also steroids. i'v been organic for a while now and i also juice carrots apples celery and cucumber most days all organic so i do try to look after myself. it does show on my face that i'v looked after myself. i also look after my body and have been interested for many years in the alexander technique pilates yoga and feldenkrais movement. i dont know if you have heard of feldenkrais as im sure it would help you M E as i know peole with me who use this and there are many sites online and utube with movements that are so easy to do you would think that your doing nothing but the next day i sometimes feel i have the strength as if i had gone to the gym.i abused myself for many many years and for the last 28 have taken as good care of myself as possible.please keep us posted on how you get on with you results and that your are hep c free, i for one will be thinking of you and hope with all my heart that you are free of it. and so glad that you have an appetitie. as one of the things i realised i had taken for granted before i had gall stones was being able to eat. thanks once again for your very helpfull and informative post which i will copy and past and refer to as im always interestesd in helpful articles that i can put to good use. lots of love and thanks and good wishes to you. grace.xoxoxo🌹

grace111 profile image
grace111 in reply to Pateo

thinking of you today pateo and hope that your blood test says zero. please let me know. 👍

Hi Jack and Grace, It sounds like both are you are going through a really difficult time. I just have hep C and almost finished with treatment. I found this article on gallstones from the British Liver Trust that you both might find helpful. As well as avoiding fatty foods there are some other diet tips: britishlivertrust.org.uk/li...

Also, if you are cutting back on dairy, make sure you get enough calcium. I'm not sure if low-fat cheeses are an option but check with your doctor. This link has a list of non-dairy sources of calcium and says how much you need: bda.uk.com/foodfacts/Calciu...

I hope you both have successful treatment and recovery.

Pateo profile image
Pateo in reply to

Tahine ( Sesame paste) is a very good source of calcium and healthy oil, provided it does not upset your liver.

You must eat some "good" oils and fats, they are essential to maintain the brain and nervous system, as well as an alternative energy source which does not feed cancers as sugars and high carbohydrate does.

Given that we all produce potential cancer cells every day, most of which are seen off by the healthy immune system, its also important not to encourage those mutated cells or provide conditions they can thrive in and become active tumours.

grace111 profile image
grace111 in reply to Pateo

no oils or fats allowed with gallbladder stones as it causes extreme pain.

grace111 profile image
grace111 in reply to grace111

maybe some low fat but i was taking vitamin d in an oil capsule and it caused me extreme pain, there is a special diet for gallstones.obviously we wont have them for ever as once the gallbladder is removed we can eat some fat again.

JackMcG profile image
JackMcG in reply to Pateo

Thank you for your kind and considered reply Pateo. Some great information there. However I've learned from Grace that I need to avoid fats and oils due to my gall bladder problems.

I'm due to have my gall bladder removed soon, so I will follow your kind advice after my surgery.

grace111 profile image
grace111 in reply to Pateo

i do love this post and will be taking note of it. i have to be careful with my diet at the moment due to gallstones and one large stone 24mm in the bile duct. thanks for this it is very helpful when i have my gallbladder removed.

JackMcG profile image
JackMcG in reply to

Thank you Marion. I'm happy to hear that you are approaching the end of your hep c treatment. I'm about to start on sobivar and ribovirin next Monday. I'm a little bit nervous about the treatment, but also keen to get started. I will be taking the medication for 12 weeks.

I would be very interested to know how the treatment was for you. Thank you for your reply and also for those very useful links.

I hope you clear the virus. Thank you for taking the time to reply with those links, it was very kind of you.

grace111 profile image
grace111

thanks marion this is really nice of you and much appreciated. glad you hear your almost finished the treatment with hep c. and i hope that you clear the virus. all the very best and thanks again. ❤️

Jack, hello, i will give You a long advice: this is the whole story: two friends diagnosed with HC, one is free of it because he started to eat only legumes, lots of beans, who te beans,chickpeas, rice, cooked with water and aromatic herbs, no salt, never use salt, no red meat, only fish and some poultry, natural bread, no fans, no precooked veggies, only natural fruits ann lots of almonds, peanuts, sunflower seeds and sesame, olive oil and coconut oil, at first it was hard but after a few months she started to feel so good she loves the diet, after three years ( also with medication, i dont know exactly wich one) shes free of the virus, i forgot no alcohol, nothing, now she can have a glass of red wine on special ocassions, she walks a lot and she is in very good shape, shes so well. My other friend just Took the meds, didnt do any thing about her diet, he eats fast food, salt as used, and canned food, red meat, well as of she was just finé, and she is not free of the virus, sometimes she doesnt feel very good and she struggles with it almost everyday, i know is difficult to change habits, but is worth it. I have a husband with chirrosis, is has been extremly difficult, i change the cooking habits and he is much better, hes anxiety comes and goes. I feel fortunate to hear from other experiences and i truly wish this could help you, Jamie Oliver ( chef) has a lot of recipes in hes blog, easy and fun to cook, i forgot cabbage, dont know the world in english but has a substance that helps the liver. Papaya and milk thist. Hugs from México!!!!!

JackMcG profile image
JackMcG in reply to

Thank you so much. I will try the food you have recommended. You are very kind to share your advice with me.

Hi Jack, my husband was diagnosed with HEP C 6 years ago , they reckon he had it for about 40 years , he had no idea....anyway he was too ill to undergo treatment then but he has recently cleared the virus , he was prescribed ribavirin and sofusbivar....he had genotype 2 . He was checked regularly and at 2 weeks into treatment the virus couldn't be detected.....wishing you all the very best .

JackMcG profile image
JackMcG in reply to

Thank you so much for your reply Blue Bells. First let me say I'm so pleased to hear that your husband has cleared the virus. That is great news and I'm truly happy for both of you.

Secondly I want to say that you have no idea how much your comment has helped me. I have been feeling so ill for the last few months and I just started a 12 week course of treatment today, Ribavirin and Sofosbuvir....I also have genotype 2. I've been feeling a bit strange today, all the usual symptoms, but I also feel that the meds have made me feel quite edgy and grumpy.

It's made my day to read your comment and read about your positive outcome. It was just what I needed today. Thank you very much for taking the time to share that story with me. It has really lifted my spirits on what has been quite a difficult day.

in reply to JackMcG

Keep me posted and good luck 🍀 The sofosbuvir was delivered weekly by our local pharmacy and we took great delight in lining up the empty bottles and just focused on the date treatment finished 😊

JackMcG profile image
JackMcG in reply to

I like that idea. Both the Sofosbuvir and the Ribavirin are delivered weekly to my pharmacy, so I'm going to line the bottles up too. That idea really pleases me, thank you for sharing it.

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