Overwhelming Fatigue

[heart_in_the_keyes]

All my life I was a 2 to 4 hr per day sleeper...sleep was a waste of time...so much to do you know.  But with the end stage liver disease and Hep C I now can sleep 20 hours a day if I would let my self.  Question:  I can just be sitting down or walking across the room and it feels like the air is going rapidly out of a balloon and I know I have to immediately sit down or lay down so I won't fall down.  I will sleep literally dead to the world for about 2-3 hrs. Don't know if this is sleep or passing out. I struggle to wake up because it would be so easy just to float in sleep. But once awake I will be up for about 4-6 hrs and then the cycle repeats, repeats, repeats.  The fatigue as many of you know is overwhelming...just sitting at this computer for an hour will exhaust me.  Any suggestions?

[Advocate1955]

Do you live alone?  I hope that you have friends or family who will check in on you regularly.  I don't know a lot about ESLD, but I have read that extreme fatigue and weakness is common.  Please be sure to avoid red meat, cut out all sodium, drink lots of water, and try to eat small meals with protein.  Don't take any medications that haven't been approved by your hepatologist.  Try to get some fresh air every day, if you can.  What is your MELD score?  Keep us posted on how you're feeling.
Advocate1955

[HectorSF]

Your symptoms are very common in decompensated and ESLD cirrhotic patients.

I don't know any advanced cirrhotic who liver disease was caused by hep C that sleeps normally. I have had insomnia or sleeping too much and  night/day reversal that is so common with HE. But the has gone worse now so I have been sleeping 2 1/2 - 3 1/2 hours max for about a year now. Where normally I needed 7-8 hours to feel rested. At times I am so exhausted I don't remember falling asleep. It is like I go into the blackness. And then in time, maybe 2-3 hours later, I come out of the blankness.

Our body's clock is controlled by hormones. Many hormones are proceeded in the liver. So our body clocks lose their cyclic nature. So our bodies do not receive the normal hormones that tell us to wake and tell us to sleep.

The liver stores glycogen which is converted to glucose for energy (this is why cirrhotics are always fatigued), creates bile to digest fats needed for energy and makes cholesterol to carry fat through the blood.

Many End-Stage patients complain of anorexia. Patients must receive adequate calories and protein in their diets. Patients frequently benefit from the addition of commonly available liquid and powdered nutritional supplements to the diet. For example Ensure High Protein drink, Instant breakfast, etc. Only rarely can patients not tolerate proteins in the form of chicken, fish, vegetables, and nutritional supplements. Of course first consult with your hepatologist and transplant dietitian.

This is why, when a patient is End-Stage they commonly appear looking like a concentration camp survivor except for the very large abdomen that appears like that of a 9 months pregnant woman.

Walking and light exercise can be helpful. I have been lifting light weighs and walking as far as I can for the last number of years. Listen to your body. Don't over do it. Then you will pay the price. Be easy on yourself. Just do what you can. If you get exhausted stop. Sit down of lay down. I called it "running on empty".
WARNING: Exercise may increase the risk of variceal bleeding in patients with advanced liver disease (if you have have ascites or varices). Thus, check with your healthcare provider regarding the risks and benefits of exercise.

How is your HE (hepatic encephalopathy)? HE can also affect mood and makes us fatigued. Always be careful of going into a stupor and feeling drunk on our body toxins. Of course coma can be life-threatening so if you have advanced HE you should always be around others as we will not know that we have slipped into a coma.

I am very sorry you are dealing with these complications of cirrhosis. Physically and emotionally this is the most difficult thing I have ever dealt with.

I hope you are getting all the support and help you need. None of us can do this alone. I have seen it break many people lending to clinical depression and worse.

I hope you get a life-saving transplant soon.

“I had the blues because I had no shoes upon upon my feet. Then I met a man who had no feet.”
"Woke up this morning feeling thankful for my life and the people that are in it."

Today my MELD score went to 31.

Hang in there!
hector

[orphanedhawk]

I was like this when my liver was severely decompensated.
It was easy at any time to fall asleep. With severe liver failure it takes so much energy simply to filter our food, so our body sleeps to allow it to do it's job.
When I was transplanted I was living on 8% of my liver. No wonder  I slept so much.

There is nothing I can suggest you do other than first, and foremost, see a very  good transplant hepatologist.

Eat well, meaning organic and fresh.
Avoid red meat and salt.
Exercise when you are able, even short walks or lie down and do leg and arm lifts.
Coffee is okay and do stay hydrated.

[copyman]

I'm so sorry to hear you are suffering like this. Are you being seen by a Hepatologist? Perhaps you can seek out a liver clinic, these are usually in bigger city's and university teaching hospitals. Even if you have someone drive you to a major city just for a consult with a Hep doc. This doctor could map out a plan for your local doctor to follow.

Hope you fell better soon.
Best of luck