Sharing A PSC Diagnosis with Family & Friends: Part One - Fatigue

Hello Everyone,
In a recent conversation with one of our forum members the topic of sharing the diagnosis of PSC with our children and other family members came up. I thought I would start this topic and add some things I’ve found along the way that might be a help as you endeavor to share with your own family and friends just what you are going through. As I often say, education is a big key in understanding PSC and that includes how to share with others. In this first of a series of things I hope to post we will deal with Fatigue and the reality of it. This article by Philip Burke was very helpful to me in sharing with my family just what I was going through. This is something your family needs to understand so they can better be able to help you during your fight with PSC. Please feel free to comment as we move along and post any additional information that may be helpful to us all.


Fatigue: A Reality that is Not Just In Your Head
The Example of Primary Sclerosing Cholangitis

By Philip Burke

Although fatigue is not unique to PSC, it is a common biologically based symptom that is very real and not your fault.

Patients with liver disease often complain of fatigue. Fatigue refers to a type of “weariness or exhaustion from labor, exertion, or stress” (Merriam-Webster). Quite often, patients feel like their medical providers missed the diagnosis of PSC despite years of complaining of fatigue, with doctors seeming to imply it was “all in [their] head.” This is not surprising. Fatigue is common to so many different health problems, most of which are quite benign, that its presence seldom helps a doctor with a diagnosis. This is particularly true in this age of chronic sleep deprivation, dependence on caffeine, overuse of alcohol, and poor diets.

Fatigue is also frustratingly inconsistent. In late stages of cirrhosis, nearly everyone with PSC will experience frequent, often daily fatigue. I’ve found myself so fatigued at times that I’ve had to crawl on my hands and knees to get up the stairs. Even at this point, though, the symptoms are very intermittent with a few days of feeling great followed by days when the slightest physical or mental effort bring about long-lasting fatigue. Other PSC patients may go for days, weeks, months, even years feeling no fatigue and then suddenly experiencing an hour to several days of bone-crushing fatigue with few identifiable triggers. Others experience extreme fatigue in very early stages with few abnormalities evident in biopsies, labs, or on imaging studies.

This inconsistency of symptoms combined with the either overt or implied messages we receive from others who see us doing well much of the time often leads us to distrust our own judgment. We may feel extreme guilt as we convince ourselves that it is simply a lack of motivation or willpower. These feelings can lead us to push ourselves too hard until we become irritable or even to the point where we simply collapse. We may then feel anger and resentment not only toward ourselves, but often toward our family or friends who have been encouraging us to take it easy. On the flipside, we may find ourselves feeling intense anger toward those we love for “just not getting it,” even though we may not believe the fatigue ourselves. Such feelings can lead to social isolation and depression, making the guilt, self-blame, and fatigue all that much worse.
Key Points

Remind yourself to accept that fatigue is a reality & is not “all in your head.”

Fatigue can be frustratingly inconsistent.

Guilt, self-blame, & feeling inadequate only make matters worse.

Take frequent, short breaks during the day.

Try taking “power naps” of 10-25 minutes, but avoid naps longer than 30 minutes.

Choose times to “push through” judiciously and allow time to recover.

Although sometimes needed, pushing through the fatigue will often lead to greater fatigue long term, sometimes days or weeks later.

Remind yourself that “giving in” and accepting fatigue as a reality is not a sign of personal weakness. Rather, it is a part of healthy self-care.

One of the most important ways we can care for ourselves is to accept that fatigue is a reality even though medical researchers struggle to understand it. When there is an acute infection, fatigue is often of what we call somatic origin. That is, physiological changes in the body that cause our musculature, cardiovascular, and respiratory systems to be slow to recover from use and stress seem to play a part. The fatigue that occurs at other times, though, does not appear to have much of a somatic basis. There are some vitamin deficiencies and the like that contribute, but these factors tend to be less intermittent than the fatigue of PSC and cirrhosis. Instead, it appears that fatigue is usually neurological, meaning that physiological, chemical, hormonal, or other changes occurring in the body lead to changes in how the nervous system responds to use. For instance, there is some evidence that regions of the brain appear to stay active after use long after they would in someone without liver disease. Cells in the nervous system also do not appear to recover their ability to function as quickly after use.

There is speculation that the most likely explanation is related to changes in chemicals and toxins that cross the blood-brain barrier resulting in gradual changes in the supportive glial cells that nourish and restore the cells in the brain that transmit information (neurons). When one gets to the point of more advanced cirrhosis, such neurological changes can sometimes even be evident on imaging, showing a specific type of neurological change called Alzheimer-type astrocytosis (please note that this is not related to Alzheimer disease in any way). These changes may contribute to fatigue; chronic, mild hepatic encephalopathy; and mild polyneuropathies (slowed nerve conduction often manifesting as very mild peripheral neuropathy with possible numbness, tingling, and weakness in extremities). Although these neurological changes significantly affect quality of life, particularly as related to the intermittent, overwhelming fatigue that often occurs, they are generally considered mild when compared to traditional neurological illnesses. More importantly, most of these changes reverse themselves after transplant, with some improvement occurring quite rapidly and others recovering occurring gradually over the first year or more after transplant.

I provide this background to drive home the point that fatigue is a very real, physiologically based problem that is not merely “in your head.” This is true even when it comes and goes; such intermittency is a hallmark of the symptom for PSC patients. Blaming ourselves for our inability to “power through” only increases the likelihood that we will push ourselves too hard and ultimately have less energy. The guilt and resentment that may follow can increase the overall physiological stress on our bodies, making us more susceptible to illness, worsening high blood pressure, increasing risk of diabetes, and more.

So does this mean you must always simply “give in” to the fatigue? Does this mean you should stop trying and not push yourself? By no means. When we stop the self-recriminations and accept the reality of fatigue, we can begin to work proactively to manage rather than fight. Fighting fatigue is like trying to stop a river from flowing. The river eventually overtakes the dam and floods into many other areas of our lives. Yet, we can learn to redirect the water to a degree by putting up temporary, small dams that allow the water to slow for a period allowing us to choose when to open the dam, as long as we recognize that the water will surge stronger for a time after it has been dammed.

Practically speaking, the first steps to managing fatigue are the same as any other approach to healthy living: eat a healthy diet with sufficient protein, particularly early in the day; exercise in moderation; develop good sleep habits; stay hydrated; and avoid excessive caffeine and other substances. In addition, taking frequent mini-breaks well before feeling exhausted will allow you to work longer and more consistently. If working a desk job at a computer, take a moment every 10 minutes or so to look off in the distance, breathe, allow tension to dissipate, and then return to your work. Periodically (every 15, 30, or 50 minutes depending on your needs), stand and walk briefly or lean your head back in your chair and close your eyes for a moment, allowing the tension to dissipate. If your job is more physically demanding, the mini-breaks should involve a ceasing of physical activity for a few moments on a regular basis as you note where in your body you are holding tension and then allowing that tension to dissipate.

Taking naps during the day can also be very valuable. If you cope with mild to moderate fatigue, plan to take naps before the fatigue is overwhelming. These “power” naps should be quite brief (10-20 minutes) and need not involve actual sleep to be restorative. If you have a place to lie down, lie on your back with only a thin pad under your head (e.g., a towel or jacket), your knees up, and your arms crossed over your chest; this position allows blood to flow to the head, providing your circulatory system a rest while maintaining oxygenation of the brain. Then focus your attention on something that clears your mind such as your breathing, a single meditative word, or some soothing music. At the end of 10-20 minutes (no more than 30), gently open your eyes, breath, and roll onto your side to gently lift yourself into a seated position, allowing yourself to feel refreshed. Stand and return to your day.

Despite all your best efforts, there are likely going to be times either now or in the future when you feel like you’ve hit a wall and simply can’t keep going. Sometimes this is because you have pushed yourself too hard, but most individuals will experience this type of overwhelming, sudden fatigue for no apparent reason. At these times, “pushing through” may work briefly but it comes at a significant emotional and physical cost. When possible, it tends to be much more effective to allow yourself to simply give in and take a break. When you do this as opposed to fighting, you may find that the exhaustion washes over you like a wave much more quickly than if you are swimming against the wave. Perhaps giving in for 20 minutes will refresh you more than you know, but at times you may simply lose half or even all of a day here and there. When this happens, reminding yourself that it is not your fault and that by resting you are caring for yourself ultimately reduces the physical and emotional toll fatigue can take over time. Fatigue is real and it is part of PSC. It is not a personal weakness.


Thank you so much for sharing this. I’ve been struggling with how best to deal with my fatigue lately and a lot of it comes down to how I handle it mentally. For me, I’m in early stages of PSC, my labs are usually fine, I don’t appear sick at all and have a hard time not getting frustrated with myself. This post really helps put it into perspective, thank you!

Hi Mark,
Thank you so much. This is going to be a great help for me in understanding what my husband is going through. I am also going to have my kids read this through. I don’t think they really have a grip on what their dad is going to go through.

There is a lot of wisdom there. One lesson I learned as I went through colitis and resulting colectomy and temporary bag is to listen to my body and act accordingly.

That has paid dividends in dealing with psc.

I think one thing that will be important for your families to understand is that with PSC there will be times when you will just have to rest and they need to understand that and support you in that. They need to know you are not being lazy, but you MUST listen to your body when it speaks and just stop and rest, there’s just no options here. And it’s not always predictable how you will be on any given day. One area for our dear ladies suffering with PSC, you will need your husband and adult children to help with things like going to the store and other errands that seem so simple, things you love doing but they will need to be prepared to step in and lend a hand. You may be going to the store one day and are shopping with one of your family members and just all of a sudden you feel you need to go back out to the car and rest. Listen to your body, and go to the car. Sometimes the smells in the store will cause you to be nauseated, just listen and do what the body is telling you to do. All this will pass one day when your day of transplant comes.


Thanks for this post, I have recently been discharged from hospital after quite serious implications with PSC (variceal bleeding and ascites). My daughter and her partner had to return from their trip to Japan. It has been difficult for me not to feel guilty and intrusive through interrupting their holiday and through feeling overwhelmed by my symptoms. Your words about making it easier for yourself, especially listening to your body and watching for fatigue signals is very wise. I have two domestic cleaning jobs that may no longer be suitable for my fatigued self? Post-discharge and procedure is always a physical and exhausting challenge to sufferers from this chronic disease, rest is excellent council and it really helps when your family step in to ensure that is exactly what you do. Happy festive season to everyone out there, and thanks for helping me make sense of what is happening to me.

Thank you so much for starting this topic! I’m using the advice you’ve given plus my sister-in-law has agreed to help me research this topic. She is a professor at a university and has access to health issues not available the average person through the university. I’m so thankful for coming across this support group! Everyone who’s reached out to me have been very positive and so helpful.
Nicole (momfirst)

Thanks for your comment Momfirst. I’m thinking of you today as you have your biopsy. I hope all goes well. Keep in touch.