I am sort of on my own in tracking my disease. I have NASH with the start of fibrosis. I am very tired in a way the feels like a fade into sleep. I also have depression and thyroid so I wonder if its liver disease or something else? What is your experience? I thank you for your responses. Signed Resting after a Bath
Can some of you comment on weakness w... - Living with Fatty...
I have Nash with fibrosis caused by meds that my Dr has given me over the years!!!! I'm also very tired through lack of sleep. I've also got under active thyroid, IBS, diverticulitis, gastritis, fibromyalgia, spondylitis, is in knee and knees that lock and won't move one way or the other even after 10 minutes!!! I also suffer with depression and anxiety. Seeing my liver consultant on the 12th July, hope he can do something to help me. I've lost about half a stone but can't seem to lose any more. I'm trying swimming to see if that helps. Love and hugs to you xxxx
Thank you for responding. I guess we get a variety of ailments once our systems have an organ that isn't working. I wanted to clarify too that my weakness and sleepiness have been getting worse since 2014. I used to love painting rooms and digging in large gardens and now I don't keep up with my housework. I think I have the neuropathy they talk about with liver disease but the doctors say its carpal tunnel. Oh, well. Let me know how your appointment goes. Hope you have a good doctor. take care.
Hi KitKat, fatigue is a frequent problem with liver disease and it is a soul suckling burden which many of us share. One thing that can be an issue is how you supply the fuel to your body. Monounsaturated fat is the best way to fuel your body as it is the easiest for your body to process. This article may be of interest fattyliverfoundation.org/fa...
Fatigue is common with all the things you mentioned. Avoid sugar and flour, processed food and quick carbs. Eat food with longer digestion time so you have consistent energy. Hot or warm baths may suck the life out of you. Go for short tepid showers. Try to arrange errands for max efficiency. Order online so things are delivered to your door instead of going out to shop. make sure you get a good nights rest of 8 hours.
Hang in there!
Hi, I am not quite sure what you mean by unreal. Remember your brain is affected by liver disease so your thinking, memory, moods, can change more than in the past. When I get tired it just like a battery winding down. Yesterday I worked very hard rearranging furniture and cleaning and today I slept most of the day till 3pm. It seems my body takes longer to get over exercise and repair tissues etc. I do have a feeling sometimes like being separated from my circumstances but I do take medications for depression that probably are the cause of that. Just learn what your abilities are and adjust life according. Some weeks will be better than others. Liver disease will change your life and make you slow down. Try to take good care of yourself and get the help you need.
I have so much fatigue .I can't get out of bed after sleeping whole night .I don't feel like sleeping. I don't have appetite even though I tried to eat it seems like my stomach is full .I had a fibroscan to detect liver disease on Oct 18.I think it had progressed or progressing to cirrhosis since I am getting so many symptomes of it.
I have incredible severe fatigue that makes it impossible to do much of anything. It is like I am not fully alive. In fact, I just slept 23 hours -- I went to the bathroom once or twice, but was too tired and sleepy to eat.
Most people really don't understand how severe this is. I hope we can support each other in acknowledging what a difficult problem we are facing.
A lot of people seem to think the exhaustion can be fixed by eating the proper foods -- yet no one seems to agree what those proper foods are.
With many illness, severe exhaustion that comes and goes is triggered by the immune system. I know I have a lot of allergy-type symptoms (sneezing, itching, etc) when I am at my most tired. It am hoping I will someday figure out what is triggering my immune over-activity, and avoid it, or treat it with anti-allergy or anti-inflammation drugs. But so far, no luck.
My heptaologist (liver doctor) is the main person who handles my fatigue. Lately, I have asked him about my fatigue several times (or actually, asked his nurse -- he doesn't answer questions personally) They say there is really nothing that can be done. The only treatment is a liver transplant and I am not eligible.
I do also get severe anemia because of chronic bleeding problems. However, I have a hematologist (blood doctor) who treats me for the iron loss with iron infusions and am up-to-date on these infusions. So, there is nothing else to be done there, either.
Both my hematologist (blood Dr.) and hepatologist (liver Dr.) seem very good. I also need a PCP (primary care physicians), but cannot find anyone who will take me. The problem of trying to find a decent PCP has been going on for about four years now. There was someone I had heard very good things about, but he turned me down on Thursday. I have been very, very upset about that during the past few days. A lot of PCPs just aren't willing to deal with someone of my complexity.
Here is something that may be helpful to some people here. As I became sicker, one of my biggest problems was showering -- especially when I was having a "bay day" or a "bad week." I would get in the shower, soap up, and be too tired to rinse off.
I now have a different approach to showering. Before I get in the shower, while sitting down, I wash with baby wipes and micellar water. Micellar water is a new product that is sold mostly as a mild make-up remover. It dissolves dirt but does not need to be rinsed off.
After I wash with the baby wipes and micellar water, I take a shower to rise off. The shower feels very refreshing. And, if I run out of energy in the middle and cannot finish rinsing off, it's OK because I have not used anything that has to be rinsed.
On days when I feel energetic enough, I also shampoo my hair (again, putting the shampoo on while sitting, before I'm in the shower) and use apricot scrub on my face.
Drying off and applying moisturizer also takes a lot of energy. Wrapping myself in a towel or terry cloth robe takes much less energy than rubbing with a towel. For applying moisturizer, I use an applicator I bought on Amazon -- it's a long, semi-flexible plastic stick with removable, washable pads.
Probably most people don't have this level of fatigue. Still, perhaps many of us have found other ways of doing things while using up less energy. Does anyone else have suggestions for saving energy while doing everyday tasks?
I just thought of another thing that helps. The ability to grocery shop was something I lost a long time ago. My husband often does the shopping now, but I also use various shopping services.
One service I use is called Shipt. They shop at various local grocery stores, and deliver the food to your house.
Shipt is more expensive than shopping by oneself. There is an annual fee to join. Expenses include a mark-up of about 17% on everything one purchases, the fact that store sales are not part of Shipts' prices, and the expectation that one will provide a tip to the person who shops and delivers the food.
To try to keep these expenses down, I look for discounts on Shipt's annual fee. These are offered fairly regularly, and often include a credit towards one's first order. Also, Shipt has its own sales. Often, I buy but mostly things that are on sale with Shipt's. I also use Shipt for heavy, inexpensive items that I wouldn't be able to lift myself -- bottled water, canned tomatoes, and so forth.
If one gets the bulky, heavy items delivered, one may be able to go a store and buy smaller items oneself. If you have a Trader Joe in your area, they are a compact store with high quality products at very reasonable prices.
I also sometimes use Whole Food's delivery service. Most items at Whole Foods are very expensive, but their "365" brand provides healthy staples at reasonable prices. There are also sometimes discounts on delivery from Whole Foods, which one can find on Amazon's site. Amazon prime members get additional discounts. People who live on disability benefits are typically eligible for a big discount on the cost of Amazon Prime membership.
Also, many stores will select groceries for you, and bring them to your car, at little or no added cost. You still have to get the groceries into your house, but at least you don't have to walk all over, looking for items you want. In my area, the best prices are at Meijer's, but the store is huge. Getting the staff to collect the groceries can save a lot of one's personal energy.
What ideas for saving one's strength have other people here come up with?
I want to thank everyone that has written a response to my question. As is typical for me I remember the question but had no memory of it to look up the responses. Since I wrote last I have worked on eating less and I use protein powder and protein bars with no sugars. My appetite is going away so I don't eat as much as I did then. I have some better activity since I have gone to proteins but still experience days where I sleep most of it like today. I just helped put the Christmas tree away in the garage and cried because it seemed so hard. I do relate to the response that describes a the "unreal" feeling. I do think that is my brain not being as clear as the old days. Two years ago my house was going the way of a hoarding look due to all my health issues and mental health issues. Now I have the house basically cleaned up and I am able to keep up with dishes more than in the past. I , too, shop very little as I have a battery run down experience also. I am grateful to know I have all of you who understand what it is like. I have lost my siblings because they think I am "being lazy" so my husband and I just muddle through our days. He is 76 and I am 56 but he has more energy than I do and works a driving job. I envy that greatly. God bless and keep each of you safe and comforted each and every day. Kitkatnash
Dear kitkatnash you’re doing okay without realising it 😉. You stated that you’ve basically cleaned up your house and you are keeping up with your dishes more than you previously did. To me that’s a step in the right direction (yes), don’t beat yourself up. Concentrate on your achievement so far, then build on it. We all get those down days. I tend to set myself goal for the day, as like you I’ve cleared the xmas decorations which I’ve managed to do in two sessions, phew 😅, but now feel happy 😃 I did it. Remember one day at a time, don’t worry be happy 😆🤣 👌.
Chrissie (72) xx.