Fatigue

Symptoms & Treatment
1

I am in early stages of PSC. Lately I am so tired that routine, daily tasks feel overwhelming. I work full-time & have a 6 year-old, so I stay busy but my fatigue is beyond normal levels. I can hardly keep my eyes open to read my daughter her bedtime story each night. Is this typical for early stages of PSC?

2

My son was diagnosed a week ago had an ERCP with two stents in the liver . HIs bil upon admission was 11 it is currently still very high 7. MD said with the bili that high he is going to be exhausted. He barely can walk 100 feet w/o getting winded. He has a post op and post hospital admission appointment with the MD the 6th of May and I will let you know

3


triocha said:

My son was diagnosed a week ago had an ERCP with two stents in the liver . HIs bil upon admission was 11 it is currently still very high 7. MD said with the bili that high he is going to be exhausted. He barely can walk 100 feet w/o getting winded. He has a post op and post hospital admission appointment with the MD the 6th of May and I will let you know

4

Thank you Triocha! I wish your son the best!

5

Im just curious but does Fatigue tend to occur with most people with PSC? I am in the late stages at 22 years old and my doctor said if the itching comes back 1 more time I will more then likely need a transplant.

I dont thing I was ever effected by Fatigue luckily enough and I hope I dont as I run on little sleep (less then 6 hours a day) and I have a 6 month old baby so I cant imagine it will be fun if I become Fatigued.

@Triocha im sorry to hear about your son. You mentioned in your reply that his Bili is 7 and saying this is high, its got me worried as mine has not come lower than 20 in over 1 year :/

Thanks

Ian

6

Hello, Rainbow Moon. In our PSC world, fatigue is a dreaded family member who you can't keep away. It is a unfortunate reality that you (as my husband did) will have to find what works for you in creating a schedule for your home that works with your body. Rather then recreating the wheel I will say, there are several great discussions on this subject. This group helped me tremendously! My best suggestion to you, as a woman is to find your patterns of fatigue and try to balance the house around that (i.e. household duties, meals, etc.). We have a young one too, it's emotionally hard to accept that you are "too tired" to fully parent sometimes. My husband had a very hard time accepting this symptom of PSC. We worked hard at finding his patterns to better support our house. There was lots of planning in advance in our home. PSC progresses different for each person. Please stay on your labs to see how you are progressing. In our experience, the more tired he was the worse his liver was doing. Know that you will be in my prayers! Take care, God bless.

7

Low blood protein can cause problems, one of which is fatigue. See symptoms here. http://www.newhealthguide.org/Low-Protein-In-Blood.html
A compromised liver has a hard time processing enough protein . My partner has found more energy getting more protein in his diet through whey powder drinks. 60 g / day is what his dr. recommended for him. Too hard to get just with food , esp with PS(freakin’)C. Here is to finding more energy!

8

Hi Rainbow Moon,

I was also recently diagnosed - about seven weeks ago. I have battled fatigue for a few years. I'm not sure if it's the PSC or one of my other autoimmune diseases. Just today I was thinking how I need to pace myself better so that I don't end up completely exhausted by 2:00 pm. I do know that eating nutrient dense whole foods and drinking lots of water helps me feel more energetic. Be kind to yourself because being a working mom is a huge job:)

How did the doctors determine you were in the early stages of PSC? I haven't been given this information. Also, I read on your bio that father died from PSC. I am so sorry for your loss.

Crewmom (Becky)

9

Hi Rainbow Moon

I just had a funny image of your daughter reading you her bedtime story and you falling asleep. How are you doing with respect to sugar? Can you cut it down at all? Don't forget two cups coffee in the morning is really good for PSC.

10

For me fatigue has been huge factor that we discovered after my PSC diagnosis. But along with that after a bunch of tests we discovered I have central sleep apnea. It may be in order to ask your doctor about doing a sleep study. If you are not getting into a deep sleep at night you are not going to be as alert the next day and with the PSC on top of that it just compounds it that much more. Best of luck to you Rainbow Moon.

11

Thanks Gloria! I try to manage my time more wisely now and enjoy every minute with my daughter.

Gloria said:

Hello, Rainbow Moon. In our PSC world, fatigue is a dreaded family member who you can't keep away. It is a unfortunate reality that you (as my husband did) will have to find what works for you in creating a schedule for your home that works with your body. Rather then recreating the wheel I will say, there are several great discussions on this subject. This group helped me tremendously! My best suggestion to you, as a woman is to find your patterns of fatigue and try to balance the house around that (i.e. household duties, meals, etc.). We have a young one too, it's emotionally hard to accept that you are "too tired" to fully parent sometimes. My husband had a very hard time accepting this symptom of PSC. We worked hard at finding his patterns to better support our house. There was lots of planning in advance in our home. PSC progresses different for each person. Please stay on your labs to see how you are progressing. In our experience, the more tired he was the worse his liver was doing. Know that you will be in my prayers! Take care, God bless.

12

Thanks Dolphin5! I'm always trying to incorporate protein into my diet despite my love for carbs but I may give whey powder drinks a try.

Dolphin5 said:

Low blood protein can cause problems, one of which is fatigue. See symptoms here. http://www.newhealthguide.org/Low-Protein-In-Blood.html
A compromised liver has a hard time processing enough protein . My partner has found more energy getting more protein in his diet through whey powder drinks. 60 g / day is what his dr. recommended for him. Too hard to get just with food , esp with PS(freakin')C. Here is to finding more energy!
13

Thanks fcmmark! I've always had issues with insomnia so its certainly something I can mention to my doctor.

fcmmark said:

For me fatigue has been huge factor that we discovered after my PSC diagnosis. But along with that after a bunch of tests we discovered I have central sleep apnea. It may be in order to ask your doctor about doing a sleep study. If you are not getting into a deep sleep at night you are not going to be as alert the next day and with the PSC on top of that it just compounds it that much more. Best of luck to you Rainbow Moon.

14

Hi Becky,

I was diagnosed via blood tests, MRIs, and a Liver Biopsy. I think there was one more liver test but I can't recall the name of it right now. At first they were torn between it being PSC and PBC but now believe it is PSC. I was referred to specialists and my test results were also viewed by multiple doctors to help make the determination between the two. Ask your doctor for information about it. He/She should have some basic information readily available to you. I can relate to it being hard to tell what is causing what. I've suffered from joint problems for years and apparently that is a lovely characteristic of PSC as well so I'm never sure which disease is the true culprit. I wish the best of luck to you!!!

Crewmom said:

Hi Rainbow Moon,

I was also recently diagnosed - about seven weeks ago. I have battled fatigue for a few years. I'm not sure if it's the PSC or one of my other autoimmune diseases. Just today I was thinking how I need to pace myself better so that I don't end up completely exhausted by 2:00 pm. I do know that eating nutrient dense whole foods and drinking lots of water helps me feel more energetic. Be kind to yourself because being a working mom is a huge job:)

How did the doctors determine you were in the early stages of PSC? I haven't been given this information. Also, I read on your bio that father died from PSC. I am so sorry for your loss.

Crewmom (Becky)