I haven't tried milk thistle but will read ... - PBC Foundation

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I haven't tried milk thistle but will read up. Soon i am having a liver biopsy, along with the tests down my throat, & up the other way!!

susanuwdc profile image
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Does anyone suffer extreme tiredness, and total lack of concentration? I am shattered, but have to work long hours just to keep decent money coming in. I can have extremely sleepless nights which is destroying me. And often if not working i can get up after a good night of 8-10 hours, very rare, but could easily sleep shortly after i wake again.

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susanuwdc
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engasser profile image
engasser

I'm sorry your so tired. I am having a hard one with work too I work 12 hour shifts. I actually take 15 - 20 min naps on my breaks that help. I take trazodone at night to help me sleep. Otherwise i would sleep only an hour or two. Though I'm not sure it's good for my PBC. I also have fibromyalgia but the PBC has made it soooo much worse. Sigh. I'm not sure I'm helping you. My thoughts and prayers are with you. May you feel better soon. Good luck with all of your tests. Patty

Kaywal profile image
Kaywal

Hi Susanuwdc. I have pretty much the same story regarding the tiredness/sleeplessness. I have bouts of extreme insomnia (sleeping 2 or 3 hours a night for weeks on end) mixed with periods when I can sleep like the dead but still feel tired all the time. I have tried everything and have found the one thing that works is Lansoprozole, which reduces stomach acid. Reading up on the subject, I have found that the insomnia is probably caused by the affect of acid on the vagus nerve which has something to do with regulating the heart rate. I have found that reducing sugary and fatty foods helps too. Ask your doc for Lansoprozole it's worth a try. I'm sleeping mostly but concentration is still a big problem for me. BTW, hope you go on okay with the tests - I had no problems :)

SC49 profile image
SC49

This will be of no help to you at all because I am only going to agree with you and I have no solutions at all!

I suffer the extreme tiredness and the only way I can manage it is to sleep during the day. I sleep well during the night and even thought I have tried to keep as normal a daily routine as possible, I just can't get through the day without sleeping. We're not even talking a wee nap here - it's a full on, unconscious, out for the count sleep for a couple of hours.

As you can imagine that isn't what my employer wanted to hear so I am on long term sick at the moment. I also have no concentration at all - I still can't read for more than a few minutes - after that I lose the thread of what I am reading. If I don't get that couple of hours sleep in the day time, my concentration is even worse. I don't remember things from one day to the next and I can't follow a conversation if there are more than 2 other people involved. It is a nightmare.

After 2 blood results Oct 2011 and then Feb 2012 that were starting to elevate again after drops after starting on urso Dec 2010 I decided to experiment myself with milk thistle. I took the month prior to the repeats May 2012 and I got good results. I then stopped but the Oct 2012 were again starting to climb again. I restarted milk thistle early Dec 2012 and my most recent (Feb 2013) LFTs were pretty great. I am still taking milk thistle and shall continue to do so. I won't know if the LFTs are still on the decline until I have repeats at some point in near future but myself, I think I'm pretty great so hold out a lot of promise that they shall be the best yet since starting urso Dec 2010.

I haven't had any side-effects from the milk thistle as they are deemed pretty much safe. I did think maybe a mind over matter originally but I noticed that my itching has pretty much got to a subsidence that it hasn't been in 3yrs since I originally started itching. I've always been a night-time itcher almost all of the time but in the last month or so it has really diminished somewhat. Yesterday due to house painting that I have undertook for the last few days I didn't take the usual one milk thistle at lunchtime and it was only last night when I started to itch a bit earlier than normal and it persisted that I really did think that maybe there is something in taking milk thistle. If it is then great.

Although everyone on here has to make up their own minds and go with guidance from a doctor if that is what they deem the right thing for themselves I have to add I've not been taking milk thistle with any doctor's guidance. I undertook it myself and so far I've not actually mentioned it to the doctor.

sistergoldenhair profile image
sistergoldenhair in reply to

Peridot, I agree with you. I was diagnosed 18yrs ago and was told I would have to have a tranplant in 10-20yrs. I heard about milk thistle and have taken it for about 16yrs. There were times I missed it because I couldn't afford it for a couple months and my tests went up, and then down when I resumed it. My doctors have always know I take it. Milk thistle rejuvenates the liver, although it may not be a cure for PBC, I believe it helps because 18yrs ago I was diagnosed stage 3 liver disease and just moved to stage 4 two years ago. I am still here and doing well, will soon be 55. Take care. cyndy

Lindilou profile image
Lindilou

A few years ago the tiredness was really bad for me, I would sleep at any opportunity outside school waiting for children, outside their after school clubs/lessons, it was lethal to sit in the car for longer than 10 mins without nodding off.

Like Peridot I started taking Milk Thistle after reading on here, mixed feedback from Docs when I told them. One intrigued asking how I knew about it and the other telling me to save my money! I have been on Milk Thistle for a year now and I monitored the bloods which started to stabilise and eventually come down. The Urso has been increased too, which has bought the bloods down more. I was only saying to hubby the other day that I dont need that afternoon sleep anymore

I take

1000mg Urso a day (500mg in morning and 500mg eve)

350mg Milk Thistle a day (175mg in morning and 175mg eve)

Best of luck with all your tests, Linda x

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