RE: xtreme Fatigue / knackered!

[Guest guest]

Hi Tim,

Sorry you're feeling so knackered, unfortunately it is quite usual to feel severe fatigue with any liver disease including psc. Its because the liver isn't processing the food right especially glucose but also other things and chemicals too including waste which normally gets mixed in the bile and removed from the body that way. The feeling does tend to vary widely so don't be too disheartened. You can help yourself a bit by having small frequent meals which are easily absorbed with not too much fat or animal protein (the liver can' remove the by products of protein digestion and the ammonia left swilling about in the blood stream does you no good at all and if there is a lot it can cause what i known as hepatic encephaology. The mild form leaves you fatigued, forgetful and 'clumsy', so you may have this. If it were to get very bad you could go into a coma so no big steak and chip dinners!!! Also get regular rests during the day.

Hope that helps, I'm sure others will be popping up with other hints and tips.

All the best.

Barbara (UK)

[Guest guest]

Prayers coming your way Tim! Hang in there. I hope that your Doctors

will give you a plan when you visit them in a couple of weeks. Be

honest about all your symptoms so that they get a clear picture of

how bad things are.

I wish you all the best,

Lee

> Hi all

> . I am in hospital for tx assessment in a couple of weeks so prob

> not a bad thing. Any pray-ers out there i wd appreciate yr prayers if

> u have the enrgy!

>

> Many thanks

>

> Tim (UK) psc 01 uc 02 ish

>

>

[Guest guest]

Dear Tim (UK),

The fatigue is certainly something that can wipe a person out! The

good news is, in my personal experience, it comes and goes. The worse

I get the longer it stays and the more frequent it comes, but it still

is not constant. If you have a cold, you're correct that is not

helping. Any little bug or over exertion will knock me way down.

Hopefully, the fatigue will let up when the cold goes away and you get

back to new.

I am glad to hear that you are going for tx evaluation soon. It's

always good to get this done and have a better idea of where you stand

in the big picture.

It just so happens that I am a prayer and you can bet on me sending

some up on your behalf!

(MO)

PSC & UC '84, chronic pancreatitis '97, listed 06/05

[Guest guest]

Tim in UK

I took the fatigue problem to Mayo in Mn. USA. In short order Dr. Lindor

summed it up this way

You can be disabled by it OR have none

It can be bad when the liver is good OR good when the liver is bad

It can come or go at anytime, without warning or explanation

It responds poorly to treatments, but anything in reason should be tried all

things equal

and it plainly said runs its own course related to but independent from the

PSC.

They did do some testing to assure liver cancer had not snuck in without

invitation, but as he had predicted from the outset, you are just one of

those that is getting a large measure of this problem.

I have certainly found this to be true. I have been tried on various

antidepressants to no avail, and have resorted to stimulant meds, that

frankly haven't done anything either, other than Ritalin seems to help me be

awake past 7 pm, which is a welcome help. It does have nasty backlashes

however and sometimes just makes things worse. (I find that when I feel that

it has given me a " bump " on certain days and then act on it " using the

energy " , I feel horrible later in the day as the stimulant burns off.

My solution was to resign employment and apply for disability, allowing my

limited energy go where it counts most, the family. This is a current status

for me, as disability is pending.

God's speed.

Best

jd, 45

UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3

Southern, IL

krmpotich@...

xtreme Fatigue / knackered!

> Hi all

>

> Just a little advise pse. The last fortnight or so I have been

> absolutely wiped out with this fatigue like I've never known b4. I

> can't go 4 a walk - I did a bit of shopping this afternoon & it nearly

> killed me. All I want to do is lie on the sofa & watch telly. I don't

> even have the enrgy / concentration to read a book. I have had a cold

> which i Know hasn't helped. I don't think there is much to be done

> about fatigue but I would like to know are there people who have bben

> like this and then picked up again or once down did / have u stayed

> doen. I am in hospital for tx assessment in a couple of weeks so prob

> not a bad thing. Any pray-ers out there i wd appreciate yr prayers if

> u have the enrgy!

>

> Many thanks

>

> Tim (UK) psc 01 uc 02 ish

>

>

>

>

>

>

>

[Guest guest]

Tim

I echo Barbara's comments. These I have found helpful too. Barb I didn't know coma was an option. That sounds restful!

Best jd, 45 UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3 Southern, IL krmpotich@...

[Guest guest]

I have been away from the group for

awhile, busy with all that goes on with chronic illnesses. Suzanne is really

struggling with the IBD. We have a mayo clinic appointment in March. Fatigue is

one of the things I want to talk to them about. Her GI doesn’t think it’s

related to the IBD because all her nutrition markers and iron levels are in

acceptable ranges. She’s going back on home bound instruction partly

because of the fatigue. I will let you know after the mayo appointment what

happens (in all areas, not just the fatigue).

Sorry I have been away so long …j

LINDA

(Mom

of Suzanne, 16; IBD 1/04; PSC 3/04)

From: [mailto: ] On Behalf Of JD & MARLENE KRMPOTICH

Sent: Saturday, January 28, 2006

6:58 PM

To:

Subject: Re: xtreme

Fatigue / knackered!

Tim in UK

I took the fatigue problem to Mayo in Mn. USA. In short

order Dr. Lindor

summed it up this way

You can be disabled by it OR have none

It can be bad when the liver is good OR good when

the liver is bad

It can come or go at anytime, without warning or

explanation

It responds poorly to treatments, but anything in

reason should be tried all

things equal

and it plainly said runs its own course related to

but independent from the

PSC.

They did do some testing to assure liver cancer

had not snuck in without

invitation, but as he had predicted from the

outset, you are just one of

those that is getting a large measure of this

problem.

I have certainly found this to be true. I have

been tried on various

antidepressants to no avail, and have resorted to

stimulant meds, that

frankly haven't done anything either, other than

Ritalin seems to help me be

awake past 7 pm, which is a welcome help. It does

have nasty backlashes

however and sometimes just makes things worse. (I

find that when I feel that

it has given me a " bump " on certain days

and then act on it " using the

energy " , I feel horrible later in the day as

the stimulant burns off.

My solution was to resign employment and apply for

disability, allowing my

limited energy go where it counts most, the

family. This is a current status

for me, as disability is pending.

God's speed.

Best

jd, 45

UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC

2004, Stage 3

Southern, IL

krmpotich@...

xtreme Fatigue / knackered!

> Hi all

>

> Just a little advise pse. The last fortnight

or so I have been

> absolutely wiped out with this fatigue like

I've never known b4. I

> can't go 4 a walk - I did a bit of shopping

this afternoon & it nearly

> killed me. All I want to do is lie on the

sofa & watch telly. I don't

> even have the enrgy / concentration to read a

book. I have had a cold

> which i Know hasn't helped. I don't think

there is much to be done

> about fatigue but I would like to know are

there people who have bben

> like this and then picked up again or once

down did / have u stayed

> doen. I am in hospital for tx assessment in a

couple of weeks so prob

> not a bad thing. Any pray-ers out there i wd

appreciate yr prayers if

> u have the enrgy!

>

> Many thanks

>

> Tim (UK) psc 01 uc 02 ish

>

>

>

>

>

>

>

[Guest guest]

,

We have missed

you. Keep us updated. Noah has had fatigue of late too. It just seems to be

increasing. He is the age where he will not stop to take a nap unless he is

made to. He would rather be a grouch. If we ever get to the car for more than

5 minutes after 3 p.m. he does fall asleep.

I hope Suzanne

improves.

Give Life!

[Guest guest]

I heard this same banter about how IBD wouldn't "explain" the fatigue. Long story SHORT after 2 years, numerous experts and medications, the colon came out (my call) and guess what, after two years of debilitating fatigue came immediate relief on post surgery day 2!!!!! (and it maintained until PSC arrived years later) Don't believe them. Sometimes chronic inflammation even if it is termed mild, when present for years and in more than a patch can easily do it.

Best jd, 45 UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3 Southern, IL krmpotich@...

[Guest guest]

Tim,

Prayers are coming your way.....I hope the fatigue recedes and your cold

goes away. How are the girls handling your illness? Are they able to help

with any of the chores?

Good luck with your transplant assessment.

Omaha Tim

[Guest guest]

Barb I didn't know coma was an option. That sounds restful!

Not when you end up all tubes and wires in intensive care. Give me my own bed at home thanks!!!!

Barbara (UK)

[Guest guest]

Welcome back ,Good luck with the second opinion at Mayo.I hope they are helpful and they have yet another therapy that they can try. As you know we tried everything offered to us.Hang in there as long as Suzanne wants to hang in there. Surgery is a last resort when you are in your shoes. Only post surgery do we wonder if we should have done it sooner.Still, I think we did the right thing by trying all the non invasive therapies first because they do work for some and they might have something new at Mayo.Stay positive, we will be thinking of you.LeeI have been away from the group for awhile, busy with all that goes on with chronic illnesses. Suzanne is really struggling with the IBD. We have a mayo clinic appointment in March. Fatigue is one of the things I want to talk to them about. Her GI doesn’t think it’s related to the IBD because all her nutrition markers and iron levels are in acceptable ranges. She’s going back on home bound instruction partly because of the fatigue. I will let you know after the mayo appointment what happens (in all areas, not just the fatigue). Sorry I have been away so long …j

[Guest guest]

Thanks Lee – it feels good to be back. I

think I was also experiencing fatigue --- but sure mine is all emotional. : (

LINDA

(Mom

of Suzanne, 16; IBD 1/04; PSC 3/04)

From: [mailto: ] On Behalf Of Lee Bria

Sent: Sunday, January 29, 2006 4:46 PM

To:

Subject: Re: xtreme

Fatigue / knackered!

Welcome back ,

Good luck with the second opinion at Mayo.

I hope they are helpful and they have yet another therapy that they can

try. As you know we tried everything offered to us.

Hang in there as long as Suzanne wants to hang in there. Surgery is a

last resort when you are in your shoes.

Only post surgery do we wonder if we should have done it sooner.

Still, I think we did the right thing by trying all the non

invasive therapies first because they do work for some and they might have

something new at Mayo.

Stay positive, we will be thinking of you.

Lee

On Jan

28, 2006, at 10:14 PM,

llduq wrote:

I have

been away from the group for awhile, busy with all that goes on with chronic

illnesses. Suzanne is really struggling with the IBD. We have a mayo clinic

appointment in March. Fatigue is one of the things I want to talk to them

about. Her GI doesn’t think it’s related to the IBD because all her nutrition

markers and iron levels are in acceptable ranges. She’s going back on home

bound instruction partly because of the fatigue. I will let you know after the

mayo appointment what happens (in all areas, not just the fatigue).

Sorry I have been away so

long …j

[Guest guest]

,

I know in my case the fatigue has been known to kick my rump regardless of my numbers. For example the other day my Alka. Phos. was only 166, and all other levels were only slightly elevated. However, I have wanted to do nothing but sleep for days. I haven't found any rhyme or reason with one exception, it increases when I have cholangitis.

Hopefully, Suzanne's strength is renewed in no time!

(MO)

[Guest guest]

Hi Tim

Thanks 2 u & everyone else for comments. I wa shaving one of those

bad days when u think this is never going to end. I have twin boys &

a girl. Working on getting them 2 do chores! I still have a cleaner

thank God but not sure how long I will be able to keep her.

Tim (UK)

>

> Tim,

>

> Prayers are coming your way.....I hope the fatigue recedes and

your cold

> goes away. How are the girls handling your illness? Are they able

to help

> with any of the chores?

>

>

[Guest guest]

Barb

Yea, you are right, there is nothing restful about a hospital stay.

Best jd, 45 UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3 Southern, IL krmpotich@...

[Guest guest]

and

I would second 's observation of no rhyme or reason on the fatigue. There is no biological marker for it. It can be good when the PSC is bad and visa versa.

Best jd, 45 UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3 Southern, IL krmpotich@...