Re: fatigue and body aches

[Guest guest]

Welcome ,

You are no alone. I also have been have issues with fatigue and body aches.

Like you, i used to do Tri's, Run 10k's and being a type A person, i could not

sit for one minute. I was dianosed with PSC in 2003 and was still able to do

most things i wanted. But as the PSC has advanced so did my Liver Numbers. The

best i can say now is that i have good days and bad days. The good days are

almost like ten years ago. the bad days are a struggle just to get through

having to take a nap part way through the day just to make it. There was a post

last month that talked about the Spoon Theory written by a young lady who has

Lupus that really hit home for me and my wife. My always asked whats the spoon

count. I have learned that if I do to much in one day, the next day is a couch

day. Also - if i have something big to do in the evening i take a nap in the

afternoon so i can make it through.

i do not know the actual medical cause of the fatigue other than as the liver

goes down hill due to PSC, it cannot process the Proten the body needs very

well.

Hope i have not scared you - i am sure someone will chime in with the medical

low down.

>

> Hello all,

>

> I am a new member recently diagnosed with PSC in jan 09. What a great

> blessing it is to have found this place! I have been learning more from

> everyone's post than I possible could with my doc's. AND I HAVE A LOT OF

> QUESTIONS! ha ha

>

> A little bit about my case... I had been suffering from excruating

> fatigue after a brutal bout with Epstien Barr Virus (mono) a few years back

> and felt as if I was getting some of my energy back when I had a cholangitis

> attack this past Nov 08. I had an ERCP done in Jan and after a quick

> recovery from that I felt like I had more energy than I have had in years.

> Wow, was I feeling good. Unfortunetly, that feeling was short-lived. I

> have found that the fatigue is returning. I used to be able to go all day

> long but lately I feel as if I loose steam halfway through my day. Also, I

> had been fairly active over the years in sports, and running, but for last

> six months find I am extremely sore after these activities and it takes

> longer for me to get my energy back. I was wondering if these problems are

> PSC related? or if it's just a part of getting old (Turned 40 last year.)

> haha

> I was wondering if anyone knows the " why " behind the fatigue. Is is diet

> related? Does anyone else have soreness with this disease? Thanks for

> letting me take my turn.

>

> Thank you and blessings to all of you! I feel as if I have an extended

> family now that I keep in my thoughts and prayers.

>

> Jeannie

>

[Guest guest]

Welcome ,

You are no alone. I also have been have issues with fatigue and body aches.

Like you, i used to do Tri's, Run 10k's and being a type A person, i could not

sit for one minute. I was dianosed with PSC in 2003 and was still able to do

most things i wanted. But as the PSC has advanced so did my Liver Numbers. The

best i can say now is that i have good days and bad days. The good days are

almost like ten years ago. the bad days are a struggle just to get through

having to take a nap part way through the day just to make it. There was a post

last month that talked about the Spoon Theory written by a young lady who has

Lupus that really hit home for me and my wife. My always asked whats the spoon

count. I have learned that if I do to much in one day, the next day is a couch

day. Also - if i have something big to do in the evening i take a nap in the

afternoon so i can make it through.

i do not know the actual medical cause of the fatigue other than as the liver

goes down hill due to PSC, it cannot process the Proten the body needs very

well.

Hope i have not scared you - i am sure someone will chime in with the medical

low down.

>

> Hello all,

>

> I am a new member recently diagnosed with PSC in jan 09. What a great

> blessing it is to have found this place! I have been learning more from

> everyone's post than I possible could with my doc's. AND I HAVE A LOT OF

> QUESTIONS! ha ha

>

> A little bit about my case... I had been suffering from excruating

> fatigue after a brutal bout with Epstien Barr Virus (mono) a few years back

> and felt as if I was getting some of my energy back when I had a cholangitis

> attack this past Nov 08. I had an ERCP done in Jan and after a quick

> recovery from that I felt like I had more energy than I have had in years.

> Wow, was I feeling good. Unfortunetly, that feeling was short-lived. I

> have found that the fatigue is returning. I used to be able to go all day

> long but lately I feel as if I loose steam halfway through my day. Also, I

> had been fairly active over the years in sports, and running, but for last

> six months find I am extremely sore after these activities and it takes

> longer for me to get my energy back. I was wondering if these problems are

> PSC related? or if it's just a part of getting old (Turned 40 last year.)

> haha

> I was wondering if anyone knows the " why " behind the fatigue. Is is diet

> related? Does anyone else have soreness with this disease? Thanks for

> letting me take my turn.

>

> Thank you and blessings to all of you! I feel as if I have an extended

> family now that I keep in my thoughts and prayers.

>

> Jeannie

>

[Guest guest]

Welcome ,

You are no alone. I also have been have issues with fatigue and body aches.

Like you, i used to do Tri's, Run 10k's and being a type A person, i could not

sit for one minute. I was dianosed with PSC in 2003 and was still able to do

most things i wanted. But as the PSC has advanced so did my Liver Numbers. The

best i can say now is that i have good days and bad days. The good days are

almost like ten years ago. the bad days are a struggle just to get through

having to take a nap part way through the day just to make it. There was a post

last month that talked about the Spoon Theory written by a young lady who has

Lupus that really hit home for me and my wife. My always asked whats the spoon

count. I have learned that if I do to much in one day, the next day is a couch

day. Also - if i have something big to do in the evening i take a nap in the

afternoon so i can make it through.

i do not know the actual medical cause of the fatigue other than as the liver

goes down hill due to PSC, it cannot process the Proten the body needs very

well.

Hope i have not scared you - i am sure someone will chime in with the medical

low down.

>

> Hello all,

>

> I am a new member recently diagnosed with PSC in jan 09. What a great

> blessing it is to have found this place! I have been learning more from

> everyone's post than I possible could with my doc's. AND I HAVE A LOT OF

> QUESTIONS! ha ha

>

> A little bit about my case... I had been suffering from excruating

> fatigue after a brutal bout with Epstien Barr Virus (mono) a few years back

> and felt as if I was getting some of my energy back when I had a cholangitis

> attack this past Nov 08. I had an ERCP done in Jan and after a quick

> recovery from that I felt like I had more energy than I have had in years.

> Wow, was I feeling good. Unfortunetly, that feeling was short-lived. I

> have found that the fatigue is returning. I used to be able to go all day

> long but lately I feel as if I loose steam halfway through my day. Also, I

> had been fairly active over the years in sports, and running, but for last

> six months find I am extremely sore after these activities and it takes

> longer for me to get my energy back. I was wondering if these problems are

> PSC related? or if it's just a part of getting old (Turned 40 last year.)

> haha

> I was wondering if anyone knows the " why " behind the fatigue. Is is diet

> related? Does anyone else have soreness with this disease? Thanks for

> letting me take my turn.

>

> Thank you and blessings to all of you! I feel as if I have an extended

> family now that I keep in my thoughts and prayers.

>

> Jeannie

>

[Guest guest]

Hi Jeannie;

I have been thinking about ways in which PSC may be related to chronic fatigue.

The most direct link is that chronic fatigue syndrome is now thought to be

associated with a leaky gut, and translocation of toxic bacterial products (such

as endotoxin) into the blood stream and liver:

____________________

Neuro Endocrinol Lett. 2007 Dec;28(6):739-44.

Normalization of the increased translocation of endotoxin from gram negative

enterobacteria (leaky gut) is accompanied by a remission of chronic fatigue

syndrome.

Maes M, Coucke F, Leunis JC

MCare4U Outpatient Clinics, Belgium. crc.mh@...

There is now evidence that chronic fatigue syndrome (CFS) is accompanied by an

increased translocation of endotoxins from gram-negative enterobacteria through

the gut wall, as demonstrated by increased prevalences and median values for

serum IgM and IgA against the endotoxins of gram-negative enterobacteria. This

condition can also be described as increased gut permeability or leaky gut and

indicates intestinal mucosal dysfunction (IMD). Here we report a case of a 13

year old girl with CFS who showed very high values for serum IgM against the LPS

of some enterobacteria and signs of oxidative and nitrosative stress, activation

of the inflammatory response system, and IgG3 subclass deficiency. Upon

treatment with specific antioxidants and a " leaky gut diet " , which both aim to

treat increased gut permeability, and immunoglobins intravenously, the increased

translocation of the LPS of gram negative enterobacteria normalized and this

normalization was accompanied by a complete remission of the CFS symptoms. PMID:

18063928.

________________________

This is basically the same hypothesis thought to be involved in PSC .... " PSC

may be triggered in genetically susceptible individuals by toxic or infectious

agents gaining access to the liver via a diseased and permeable colon " :

________________________

Best Pract Res Clin Gastroenterol. 2001 Aug;15(4):577-89.

Aetiopathogenesis of primary sclerosing cholangitis.

Cullen S, Chapman R

Department of Gastroenterology, Oxford Radcliffe Hospital, Headington, Oxford,

UK.

The aetiology and pathogenesis of PSC have not yet been clearly defined. The

hypothesis that PSC is an immune mediated disease is supported by associations

with HLA haplotypes, the presence of autoantibodies, increased levels of total

serum immunoglobulins and the association with other autoimmune diseases. PSC

does not, however, have many of the characteristics of classical autoimmunity,

particularly the usual female preponderance of disease and lack of a good

response to immunosuppression. Non-immune mechanisms such as bacterial

infection, ischaemia and toxicity are also clearly important in the development

of the disease and these factors may trigger peribiliary inflammation and

cytokine-induced hepatic fibrosis. PSC may be triggered in genetically

susceptible individuals by toxic or infectious agents gaining access to the

liver via a diseased and permeable colon. PMID: 11492969.

________________________

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

> I was wondering if anyone knows the " why " behind the fatigue.

> Jeannie

[Guest guest]

Hi Jeannie;

I have been thinking about ways in which PSC may be related to chronic fatigue.

The most direct link is that chronic fatigue syndrome is now thought to be

associated with a leaky gut, and translocation of toxic bacterial products (such

as endotoxin) into the blood stream and liver:

____________________

Neuro Endocrinol Lett. 2007 Dec;28(6):739-44.

Normalization of the increased translocation of endotoxin from gram negative

enterobacteria (leaky gut) is accompanied by a remission of chronic fatigue

syndrome.

Maes M, Coucke F, Leunis JC

MCare4U Outpatient Clinics, Belgium. crc.mh@...

There is now evidence that chronic fatigue syndrome (CFS) is accompanied by an

increased translocation of endotoxins from gram-negative enterobacteria through

the gut wall, as demonstrated by increased prevalences and median values for

serum IgM and IgA against the endotoxins of gram-negative enterobacteria. This

condition can also be described as increased gut permeability or leaky gut and

indicates intestinal mucosal dysfunction (IMD). Here we report a case of a 13

year old girl with CFS who showed very high values for serum IgM against the LPS

of some enterobacteria and signs of oxidative and nitrosative stress, activation

of the inflammatory response system, and IgG3 subclass deficiency. Upon

treatment with specific antioxidants and a " leaky gut diet " , which both aim to

treat increased gut permeability, and immunoglobins intravenously, the increased

translocation of the LPS of gram negative enterobacteria normalized and this

normalization was accompanied by a complete remission of the CFS symptoms. PMID:

18063928.

________________________

This is basically the same hypothesis thought to be involved in PSC .... " PSC

may be triggered in genetically susceptible individuals by toxic or infectious

agents gaining access to the liver via a diseased and permeable colon " :

________________________

Best Pract Res Clin Gastroenterol. 2001 Aug;15(4):577-89.

Aetiopathogenesis of primary sclerosing cholangitis.

Cullen S, Chapman R

Department of Gastroenterology, Oxford Radcliffe Hospital, Headington, Oxford,

UK.

The aetiology and pathogenesis of PSC have not yet been clearly defined. The

hypothesis that PSC is an immune mediated disease is supported by associations

with HLA haplotypes, the presence of autoantibodies, increased levels of total

serum immunoglobulins and the association with other autoimmune diseases. PSC

does not, however, have many of the characteristics of classical autoimmunity,

particularly the usual female preponderance of disease and lack of a good

response to immunosuppression. Non-immune mechanisms such as bacterial

infection, ischaemia and toxicity are also clearly important in the development

of the disease and these factors may trigger peribiliary inflammation and

cytokine-induced hepatic fibrosis. PSC may be triggered in genetically

susceptible individuals by toxic or infectious agents gaining access to the

liver via a diseased and permeable colon. PMID: 11492969.

________________________

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

> I was wondering if anyone knows the " why " behind the fatigue.

> Jeannie

[Guest guest]

Hey guys,

Thought I would chime in here on the fatigue and body aches. I dont know for

sure why we have to suffer with these two symptoms, and niether do the doctors,

but a good guess is the fact that we have difficulty absorbing fatty vitamins

(A,K,E, ect.). I take a daily multivitamin and several individual suppliments to

help. I have had some luck with this, but nothing seems to get rid of the

exhausted feeling when I am very active at work. Just thought I would throw out

an idea,

Rob in Saint Louis

> >

> > Hello all,

> >

> > I am a new member recently diagnosed with PSC in jan 09. What a great

> > blessing it is to have found this place! I have been learning more from

> > everyone's post than I possible could with my doc's. AND I HAVE A LOT OF

> > QUESTIONS! ha ha

> >

> > A little bit about my case... I had been suffering from excruating

> > fatigue after a brutal bout with Epstien Barr Virus (mono) a few years back

> > and felt as if I was getting some of my energy back when I had a cholangitis

> > attack this past Nov 08. I had an ERCP done in Jan and after a quick

> > recovery from that I felt like I had more energy than I have had in years.

> > Wow, was I feeling good. Unfortunetly, that feeling was short-lived. I

> > have found that the fatigue is returning. I used to be able to go all day

> > long but lately I feel as if I loose steam halfway through my day. Also, I

> > had been fairly active over the years in sports, and running, but for last

> > six months find I am extremely sore after these activities and it takes

> > longer for me to get my energy back. I was wondering if these problems are

> > PSC related? or if it's just a part of getting old (Turned 40 last year.)

> > haha

> > I was wondering if anyone knows the " why " behind the fatigue. Is is diet

> > related? Does anyone else have soreness with this disease? Thanks for

> > letting me take my turn.

> >

> > Thank you and blessings to all of you! I feel as if I have an extended

> > family now that I keep in my thoughts and prayers.

> >

> > Jeannie

> >

>

[Guest guest]

Hey guys,

Thought I would chime in here on the fatigue and body aches. I dont know for

sure why we have to suffer with these two symptoms, and niether do the doctors,

but a good guess is the fact that we have difficulty absorbing fatty vitamins

(A,K,E, ect.). I take a daily multivitamin and several individual suppliments to

help. I have had some luck with this, but nothing seems to get rid of the

exhausted feeling when I am very active at work. Just thought I would throw out

an idea,

Rob in Saint Louis

> >

> > Hello all,

> >

> > I am a new member recently diagnosed with PSC in jan 09. What a great

> > blessing it is to have found this place! I have been learning more from

> > everyone's post than I possible could with my doc's. AND I HAVE A LOT OF

> > QUESTIONS! ha ha

> >

> > A little bit about my case... I had been suffering from excruating

> > fatigue after a brutal bout with Epstien Barr Virus (mono) a few years back

> > and felt as if I was getting some of my energy back when I had a cholangitis

> > attack this past Nov 08. I had an ERCP done in Jan and after a quick

> > recovery from that I felt like I had more energy than I have had in years.

> > Wow, was I feeling good. Unfortunetly, that feeling was short-lived. I

> > have found that the fatigue is returning. I used to be able to go all day

> > long but lately I feel as if I loose steam halfway through my day. Also, I

> > had been fairly active over the years in sports, and running, but for last

> > six months find I am extremely sore after these activities and it takes

> > longer for me to get my energy back. I was wondering if these problems are

> > PSC related? or if it's just a part of getting old (Turned 40 last year.)

> > haha

> > I was wondering if anyone knows the " why " behind the fatigue. Is is diet

> > related? Does anyone else have soreness with this disease? Thanks for

> > letting me take my turn.

> >

> > Thank you and blessings to all of you! I feel as if I have an extended

> > family now that I keep in my thoughts and prayers.

> >

> > Jeannie

> >

>

[Guest guest]

Jeannie,

Hi! Welcome to the group! Sorry you have to be here, but glad you found us!

You were asking some questions about fatigue. I don't actually know the medical

" why " behind it, but I can tell you that what you described sounds pretty

accurate to me as PSC fatigue. For me, the exhaustion is sometimes brutal where

I can't even get out of bed, feel like my body is made of lead or wet sand or

something and every single part of me is exhausted, like raising my hand to pet

my cat (who I love more than I could possibly say) requires energy of a

Herculean level. Other days, I might start out with a bit of energy but by the

middle of the day it's like I'm a battery running on low and just can't function

without a nap. The exhaustion (at least for me) isn't just physical. It's

mental and emotional, too. I think that's a pretty common thing...but if it's

not, somebody chime in and correct me, okay?

As to the fatigue being diet related, I don't have any idea on that one but I

can tell you that I've met with more than a few dieticians and nutritionists and

other than mentioning that my food intake was too low to fuel my body, nobody

ever mentioned anything specific about diet being linked in to the exhaustion.

When you ask about soreness, are you referring to a general thing or a specific

pain? Again, I can only speak for me, but I ache almost all the time like I

have a severe flu. Do you know what I mean, those body aches that just drive

you mad? But, I also am prone to nausea, vomiting, RUQ pain, itching, etc. If

by soreness, you're referencing a pain or uncomfortable feeling kind of like a

prickly brick or a heavy water balloon is lodged up under your ribs (right-hand

side), that's generally considered to be RUQ (Right Upper Quadrant) pain and, I

believe, that is a fairly common symptom of PSC.

Well, I don't know if I've just confused things more, but hopefully something I

said made sense!

I'm glad you found us and that you have lots of questions. I think the fact

that we all ask each other questions is one of the reasons we're such a

well-informed group!

Hope you're feeling strong and having a great day!

Sandi in VA/Rochester

[Guest guest]

Hi Jeanie,

Sorry you had to find us, but welcome to our group, you'll find a lot of support

here.

I don't know if this will be helpful to you but I will share my experience with

you and a resent discovery about the pain, I am still looking for one for the

fatigue.

I have PSC of course, and they resently discovered that I have an absorbtion

problem that is causing my kidneys to be overloaded with Oxalate, a natural

chemical found in food that is grown. This chemical causes a form of kidney

stones and has been linked to Autism and some forms of connective tissue

problems, one called vulvadenia specifically. With the connective tissue

problems it causes muscle and joint pain, Well I was diagnosed with fibromyalgia

years ago, I am also 40.

The Doctor's placed me on something called a Low Oxalate Diet because my Urinary

Oxalate Level was so high that I was at risk for developing kidney failure

(normal is under 42 and I was 1200), since I went on the diet my pain levels

have come down signficantly. The more I have read about Oxalate the more I have

found this to be a common occurance. This chemical cause GI upset and

inflamation, joint pain, and loads of otherproblems in people who are sensative

to it. The diet is hard to follow though because oxalate is in everything that

is grown. SOmethings more then others so you have to watch everything that you

eat and know what is classifies as extremely high, like soy products and peanut

butter . If you are interest in more information there are three websites

below. Please remeber that I was placed on this diet by my endocrinologist

after my medical tests indicated a medical need so I cannot recommend just

beginning this diet without talking to your doctor first. I can tell you that

it has made a difference for me in my pain levels. It has not touched my

fatigue.

For the Fatigue, I have found that I have to do things in shifts and rest. I

still work 50 hours a week but it is getting really hard at this point. I rest

a lot on weekends and my family helps out a lot with the house work. I don't

push myself, If I am too tired to do something, I don't do it or I will be even

tireder the next day and my pain will be worse the nextt day. I have learned to

listen to my body, it helps a lot. I have a lot of health problems so I am not

sure how much of the fatigue is related to what.

Any way - welcome to the group, the links are below.

DAwn

http://lowoxalate.info/

http://www.branwen.com/rowan/oxalate.htm

http://www.vulvarpainfoundation.org/vpfcookbook.htm

>

> Hello all,

>

> I am a new member recently diagnosed with PSC in jan 09. What a great

> blessing it is to have found this place! I have been learning more from

> everyone's post than I possible could with my doc's. AND I HAVE A LOT OF

> QUESTIONS! ha ha

>

> A little bit about my case... I had been suffering from excruating

> fatigue after a brutal bout with Epstien Barr Virus (mono) a few years back

> and felt as if I was getting some of my energy back when I had a cholangitis

> attack this past Nov 08. I had an ERCP done in Jan and after a quick

> recovery from that I felt like I had more energy than I have had in years.

> Wow, was I feeling good. Unfortunetly, that feeling was short-lived. I

> have found that the fatigue is returning. I used to be able to go all day

> long but lately I feel as if I loose steam halfway through my day. Also, I

> had been fairly active over the years in sports, and running, but for last

> six months find I am extremely sore after these activities and it takes

> longer for me to get my energy back. I was wondering if these problems are

> PSC related? or if it's just a part of getting old (Turned 40 last year.)

> haha

> I was wondering if anyone knows the " why " behind the fatigue. Is is diet

> related? Does anyone else have soreness with this disease? Thanks for

> letting me take my turn.

>

> Thank you and blessings to all of you! I feel as if I have an extended

> family now that I keep in my thoughts and prayers.

>

> Jeannie

>

[Guest guest]

Thank you all!  Everyone's answers have been appreciated!

 

 I am very suspicious about diet playing a role in fatigue as well as soreness, with PSC patients. I think you are right Rob about PSC patients not being able to store ADEK vitamins.  I am sure that has a lot to do with it.  I have noticed at least with myself that  too much SUGAR and sometimes too many CARBs (like pizza, pasta's and breads) seem to make me more fatigued the next day and might also be playing a role with my aches and pains. (My doc's have never mentioned anything other than to follow a low-fat diet after my ERCP) . However, as you have mentioned Dawn, if I do too much (regardless of diet) on one day... I am so tired the next.  And yes I have felt that lovely URQ pain/bloating feeling Sandi described in her post.  But this is more llike the aches associcated w/Flu.  And yes Sandy, I also feel emotionally and mentally drained usually during the same time as when I am suffering from that awful fatigue!

 

Thanks again for sharing,

 

Jeannie:)

 

p.s. Rob I also am from st. louis, MO!

Hi Jeanie, Sorry you had to find us, but welcome to our group, you'll find a lot of support here. I don't know if this will be helpful to you but I will share my experience with you and a resent discovery about the pain, I am still looking for one for the fatigue.

I have PSC of course, and they resently discovered that I have an absorbtion problem that is causing my kidneys to be overloaded with Oxalate, a natural chemical found in food that is grown. This chemical causes a form of kidney stones and has been linked to Autism and some forms of connective tissue problems, one called vulvadenia specifically. With the connective tissue problems it causes muscle and joint pain, Well I was diagnosed with fibromyalgia years ago, I am also 40.

The Doctor's placed me on something called a Low Oxalate Diet because my Urinary Oxalate Level was so high that I was at risk for developing kidney failure (normal is under 42 and I was 1200), since I went on the diet my pain levels have come down signficantly. The more I have read about Oxalate the more I have found this to be a common occurance. This chemical cause GI upset and inflamation, joint pain, and loads of otherproblems in people who are sensative to it. The diet is hard to follow though because oxalate is in everything that is grown. SOmethings more then others so you have to watch everything that you eat and know what is classifies as extremely high, like soy products and peanut butter . If you are interest in more information there are three websites below. Please remeber that I was placed on this diet by my endocrinologist after my medical tests indicated a medical need so I cannot recommend just beginning this diet without talking to your doctor first. I can tell you that it has made a difference for me in my pain levels. It has not touched my fatigue.

For the Fatigue, I have found that I have to do things in shifts and rest. I still work 50 hours a week but it is getting really hard at this point. I rest a lot on weekends and my family helps out a lot with the house work. I don't push myself, If I am too tired to do something, I don't do it or I will be even tireder the next day and my pain will be worse the nextt day. I have learned to listen to my body, it helps a lot. I have a lot of health problems so I am not sure how much of the fatigue is related to what.

Any way - welcome to the group, the links are below. DAwn http://lowoxalate.info/http://www.branwen.com/rowan/oxalate.htm

http://www.vulvarpainfoundation.org/vpfcookbook.htm >

> Hello all,> > I am a new member recently diagnosed with PSC in jan 09. What a great> blessing it is to have found this place! I have been learning more from> everyone's post than I possible could with my doc's. AND I HAVE A LOT OF

> QUESTIONS! ha ha> > A little bit about my case... I had been suffering from excruating> fatigue after a brutal bout with Epstien Barr Virus (mono) a few years back> and felt as if I was getting some of my energy back when I had a cholangitis

> attack this past Nov 08. I had an ERCP done in Jan and after a quick> recovery from that I felt like I had more energy than I have had in years.> Wow, was I feeling good. Unfortunetly, that feeling was short-lived. I

> have found that the fatigue is returning. I used to be able to go all day> long but lately I feel as if I loose steam halfway through my day. Also, I> had been fairly active over the years in sports, and running, but for last

> six months find I am extremely sore after these activities and it takes> longer for me to get my energy back. I was wondering if these problems are> PSC related? or if it's just a part of getting old (Turned 40 last year.)

> haha> I was wondering if anyone knows the " why " behind the fatigue. Is is diet> related? Does anyone else have soreness with this disease? Thanks for> letting me take my turn. >

> Thank you and blessings to all of you! I feel as if I have an extended> family now that I keep in my thoughts and prayers.> > Jeannie>

[Guest guest]

Thanks Rob for the reply.  I noticed you are from st. louis.  SO AM I.  Are you going to Chicago conference?  My husband and I are planning on going.  Would love to meet another PSCer from st.louis.

 

Jeannie:)

Hey guys,Thought I would chime in here on the fatigue and body aches. I dont know for sure why we have to suffer with these two symptoms, and niether do the doctors, but a good guess is the fact that we have difficulty absorbing fatty vitamins (A,K,E, ect.). I take a daily multivitamin and several individual suppliments to help. I have had some luck with this, but nothing seems to get rid of the exhausted feeling when I am very active at work. Just thought I would throw out an idea,

Rob in Saint Louis

> >> > Hello all,> > > > I am a new member recently diagnosed with PSC in jan 09. What a great

> > blessing it is to have found this place! I have been learning more from> > everyone's post than I possible could with my doc's. AND I HAVE A LOT OF> > QUESTIONS! ha ha> >

> > A little bit about my case... I had been suffering from excruating> > fatigue after a brutal bout with Epstien Barr Virus (mono) a few years back> > and felt as if I was getting some of my energy back when I had a cholangitis

> > attack this past Nov 08. I had an ERCP done in Jan and after a quick> > recovery from that I felt like I had more energy than I have had in years.> > Wow, was I feeling good. Unfortunetly, that feeling was short-lived. I

> > have found that the fatigue is returning. I used to be able to go all day> > long but lately I feel as if I loose steam halfway through my day. Also, I> > had been fairly active over the years in sports, and running, but for last

> > six months find I am extremely sore after these activities and it takes> > longer for me to get my energy back. I was wondering if these problems are> > PSC related? or if it's just a part of getting old (Turned 40 last year.)

> > haha> > I was wondering if anyone knows the " why " behind the fatigue. Is is diet> > related? Does anyone else have soreness with this disease? Thanks for> > letting me take my turn.

> > > > Thank you and blessings to all of you! I feel as if I have an extended> > family now that I keep in my thoughts and prayers.> > > > Jeannie> >>

[Guest guest]

Thanks Rob for the reply.  I noticed you are from st. louis.  SO AM I.  Are you going to Chicago conference?  My husband and I are planning on going.  Would love to meet another PSCer from st.louis.

 

Jeannie:)

Hey guys,Thought I would chime in here on the fatigue and body aches. I dont know for sure why we have to suffer with these two symptoms, and niether do the doctors, but a good guess is the fact that we have difficulty absorbing fatty vitamins (A,K,E, ect.). I take a daily multivitamin and several individual suppliments to help. I have had some luck with this, but nothing seems to get rid of the exhausted feeling when I am very active at work. Just thought I would throw out an idea,

Rob in Saint Louis

> >> > Hello all,> > > > I am a new member recently diagnosed with PSC in jan 09. What a great

> > blessing it is to have found this place! I have been learning more from> > everyone's post than I possible could with my doc's. AND I HAVE A LOT OF> > QUESTIONS! ha ha> >

> > A little bit about my case... I had been suffering from excruating> > fatigue after a brutal bout with Epstien Barr Virus (mono) a few years back> > and felt as if I was getting some of my energy back when I had a cholangitis

> > attack this past Nov 08. I had an ERCP done in Jan and after a quick> > recovery from that I felt like I had more energy than I have had in years.> > Wow, was I feeling good. Unfortunetly, that feeling was short-lived. I

> > have found that the fatigue is returning. I used to be able to go all day> > long but lately I feel as if I loose steam halfway through my day. Also, I> > had been fairly active over the years in sports, and running, but for last

> > six months find I am extremely sore after these activities and it takes> > longer for me to get my energy back. I was wondering if these problems are> > PSC related? or if it's just a part of getting old (Turned 40 last year.)

> > haha> > I was wondering if anyone knows the " why " behind the fatigue. Is is diet> > related? Does anyone else have soreness with this disease? Thanks for> > letting me take my turn.

> > > > Thank you and blessings to all of you! I feel as if I have an extended> > family now that I keep in my thoughts and prayers.> > > > Jeannie> >>

[Guest guest]

Thanks Rob for the reply.  I noticed you are from st. louis.  SO AM I.  Are you going to Chicago conference?  My husband and I are planning on going.  Would love to meet another PSCer from st.louis.

 

Jeannie:)

Hey guys,Thought I would chime in here on the fatigue and body aches. I dont know for sure why we have to suffer with these two symptoms, and niether do the doctors, but a good guess is the fact that we have difficulty absorbing fatty vitamins (A,K,E, ect.). I take a daily multivitamin and several individual suppliments to help. I have had some luck with this, but nothing seems to get rid of the exhausted feeling when I am very active at work. Just thought I would throw out an idea,

Rob in Saint Louis

> >> > Hello all,> > > > I am a new member recently diagnosed with PSC in jan 09. What a great

> > blessing it is to have found this place! I have been learning more from> > everyone's post than I possible could with my doc's. AND I HAVE A LOT OF> > QUESTIONS! ha ha> >

> > A little bit about my case... I had been suffering from excruating> > fatigue after a brutal bout with Epstien Barr Virus (mono) a few years back> > and felt as if I was getting some of my energy back when I had a cholangitis

> > attack this past Nov 08. I had an ERCP done in Jan and after a quick> > recovery from that I felt like I had more energy than I have had in years.> > Wow, was I feeling good. Unfortunetly, that feeling was short-lived. I

> > have found that the fatigue is returning. I used to be able to go all day> > long but lately I feel as if I loose steam halfway through my day. Also, I> > had been fairly active over the years in sports, and running, but for last

> > six months find I am extremely sore after these activities and it takes> > longer for me to get my energy back. I was wondering if these problems are> > PSC related? or if it's just a part of getting old (Turned 40 last year.)

> > haha> > I was wondering if anyone knows the " why " behind the fatigue. Is is diet> > related? Does anyone else have soreness with this disease? Thanks for> > letting me take my turn.

> > > > Thank you and blessings to all of you! I feel as if I have an extended> > family now that I keep in my thoughts and prayers.> > > > Jeannie> >>

[Guest guest]

Dear ,

 

First let me say your posts always Rock!  I love the research and knowledge that you lend to this group!  I have definetly learned more from your posts than from all my wonderful doc's. Thank you.  Being recently diagnosed, I still am learning so much about the various manifestations of this disease and have recently learned about the IBD/UC relation to PSC.  I haven't been required to have a colonoscopy...yet.. and don't believe I am suffering from any symptoms related to such.  Do you think that I should get one?  Could my fatigue be related to leaky gut?  I do on rare ocassions see mucus in my stools.(fat?) 

 

Jeannie:)

Hi Jeannie;I have been thinking about ways in which PSC may be related to chronic fatigue. The most direct link is that chronic fatigue syndrome is now thought to be associated with a leaky gut, and translocation of toxic bacterial products (such as endotoxin) into the blood stream and liver:

____________________Neuro Endocrinol Lett. 2007 Dec;28(6):739-44.Normalization of the increased translocation of endotoxin from gram negative enterobacteria (leaky gut) is accompanied by a remission of chronic fatigue syndrome.

Maes M, Coucke F, Leunis JCMCare4U Outpatient Clinics, Belgium. crc.mh@...There is now evidence that chronic fatigue syndrome (CFS) is accompanied by an increased translocation of endotoxins from gram-negative enterobacteria through the gut wall, as demonstrated by increased prevalences and median values for serum IgM and IgA against the endotoxins of gram-negative enterobacteria. This condition can also be described as increased gut permeability or leaky gut and indicates intestinal mucosal dysfunction (IMD). Here we report a case of a 13 year old girl with CFS who showed very high values for serum IgM against the LPS of some enterobacteria and signs of oxidative and nitrosative stress, activation of the inflammatory response system, and IgG3 subclass deficiency. Upon treatment with specific antioxidants and a " leaky gut diet " , which both aim to treat increased gut permeability, and immunoglobins intravenously, the increased translocation of the LPS of gram negative enterobacteria normalized and this normalization was accompanied by a complete remission of the CFS symptoms. PMID: 18063928.

________________________This is basically the same hypothesis thought to be involved in PSC .... " PSC may be triggered in genetically susceptible individuals by toxic or infectious agents gaining access to the liver via a diseased and permeable colon " :

________________________ Best Pract Res Clin Gastroenterol. 2001 Aug;15(4):577-89.Aetiopathogenesis of primary sclerosing cholangitis.Cullen S, Chapman RDepartment of Gastroenterology, Oxford Radcliffe Hospital, Headington, Oxford, UK.

The aetiology and pathogenesis of PSC have not yet been clearly defined. The hypothesis that PSC is an immune mediated disease is supported by associations with HLA haplotypes, the presence of autoantibodies, increased levels of total serum immunoglobulins and the association with other autoimmune diseases. PSC does not, however, have many of the characteristics of classical autoimmunity, particularly the usual female preponderance of disease and lack of a good response to immunosuppression. Non-immune mechanisms such as bacterial infection, ischaemia and toxicity are also clearly important in the development of the disease and these factors may trigger peribiliary inflammation and cytokine-induced hepatic fibrosis. PSC may be triggered in genetically susceptible individuals by toxic or infectious agents gaining access to the liver via a diseased and permeable colon. PMID: 11492969.

________________________ Best regards,Dave (father of (23); PSC 07/03; UC 08/03)

> I was wondering if anyone knows the " why " behind the fatigue. > Jeannie

[Guest guest]

Dear ,

 

First let me say your posts always Rock!  I love the research and knowledge that you lend to this group!  I have definetly learned more from your posts than from all my wonderful doc's. Thank you.  Being recently diagnosed, I still am learning so much about the various manifestations of this disease and have recently learned about the IBD/UC relation to PSC.  I haven't been required to have a colonoscopy...yet.. and don't believe I am suffering from any symptoms related to such.  Do you think that I should get one?  Could my fatigue be related to leaky gut?  I do on rare ocassions see mucus in my stools.(fat?) 

 

Jeannie:)

Hi Jeannie;I have been thinking about ways in which PSC may be related to chronic fatigue. The most direct link is that chronic fatigue syndrome is now thought to be associated with a leaky gut, and translocation of toxic bacterial products (such as endotoxin) into the blood stream and liver:

____________________Neuro Endocrinol Lett. 2007 Dec;28(6):739-44.Normalization of the increased translocation of endotoxin from gram negative enterobacteria (leaky gut) is accompanied by a remission of chronic fatigue syndrome.

Maes M, Coucke F, Leunis JCMCare4U Outpatient Clinics, Belgium. crc.mh@...There is now evidence that chronic fatigue syndrome (CFS) is accompanied by an increased translocation of endotoxins from gram-negative enterobacteria through the gut wall, as demonstrated by increased prevalences and median values for serum IgM and IgA against the endotoxins of gram-negative enterobacteria. This condition can also be described as increased gut permeability or leaky gut and indicates intestinal mucosal dysfunction (IMD). Here we report a case of a 13 year old girl with CFS who showed very high values for serum IgM against the LPS of some enterobacteria and signs of oxidative and nitrosative stress, activation of the inflammatory response system, and IgG3 subclass deficiency. Upon treatment with specific antioxidants and a " leaky gut diet " , which both aim to treat increased gut permeability, and immunoglobins intravenously, the increased translocation of the LPS of gram negative enterobacteria normalized and this normalization was accompanied by a complete remission of the CFS symptoms. PMID: 18063928.

________________________This is basically the same hypothesis thought to be involved in PSC .... " PSC may be triggered in genetically susceptible individuals by toxic or infectious agents gaining access to the liver via a diseased and permeable colon " :

________________________ Best Pract Res Clin Gastroenterol. 2001 Aug;15(4):577-89.Aetiopathogenesis of primary sclerosing cholangitis.Cullen S, Chapman RDepartment of Gastroenterology, Oxford Radcliffe Hospital, Headington, Oxford, UK.

The aetiology and pathogenesis of PSC have not yet been clearly defined. The hypothesis that PSC is an immune mediated disease is supported by associations with HLA haplotypes, the presence of autoantibodies, increased levels of total serum immunoglobulins and the association with other autoimmune diseases. PSC does not, however, have many of the characteristics of classical autoimmunity, particularly the usual female preponderance of disease and lack of a good response to immunosuppression. Non-immune mechanisms such as bacterial infection, ischaemia and toxicity are also clearly important in the development of the disease and these factors may trigger peribiliary inflammation and cytokine-induced hepatic fibrosis. PSC may be triggered in genetically susceptible individuals by toxic or infectious agents gaining access to the liver via a diseased and permeable colon. PMID: 11492969.

________________________ Best regards,Dave (father of (23); PSC 07/03; UC 08/03)

> I was wondering if anyone knows the " why " behind the fatigue. > Jeannie

[Guest guest]

Dear ,

 

First let me say your posts always Rock!  I love the research and knowledge that you lend to this group!  I have definetly learned more from your posts than from all my wonderful doc's. Thank you.  Being recently diagnosed, I still am learning so much about the various manifestations of this disease and have recently learned about the IBD/UC relation to PSC.  I haven't been required to have a colonoscopy...yet.. and don't believe I am suffering from any symptoms related to such.  Do you think that I should get one?  Could my fatigue be related to leaky gut?  I do on rare ocassions see mucus in my stools.(fat?) 

 

Jeannie:)

Hi Jeannie;I have been thinking about ways in which PSC may be related to chronic fatigue. The most direct link is that chronic fatigue syndrome is now thought to be associated with a leaky gut, and translocation of toxic bacterial products (such as endotoxin) into the blood stream and liver:

____________________Neuro Endocrinol Lett. 2007 Dec;28(6):739-44.Normalization of the increased translocation of endotoxin from gram negative enterobacteria (leaky gut) is accompanied by a remission of chronic fatigue syndrome.

Maes M, Coucke F, Leunis JCMCare4U Outpatient Clinics, Belgium. crc.mh@...There is now evidence that chronic fatigue syndrome (CFS) is accompanied by an increased translocation of endotoxins from gram-negative enterobacteria through the gut wall, as demonstrated by increased prevalences and median values for serum IgM and IgA against the endotoxins of gram-negative enterobacteria. This condition can also be described as increased gut permeability or leaky gut and indicates intestinal mucosal dysfunction (IMD). Here we report a case of a 13 year old girl with CFS who showed very high values for serum IgM against the LPS of some enterobacteria and signs of oxidative and nitrosative stress, activation of the inflammatory response system, and IgG3 subclass deficiency. Upon treatment with specific antioxidants and a " leaky gut diet " , which both aim to treat increased gut permeability, and immunoglobins intravenously, the increased translocation of the LPS of gram negative enterobacteria normalized and this normalization was accompanied by a complete remission of the CFS symptoms. PMID: 18063928.

________________________This is basically the same hypothesis thought to be involved in PSC .... " PSC may be triggered in genetically susceptible individuals by toxic or infectious agents gaining access to the liver via a diseased and permeable colon " :

________________________ Best Pract Res Clin Gastroenterol. 2001 Aug;15(4):577-89.Aetiopathogenesis of primary sclerosing cholangitis.Cullen S, Chapman RDepartment of Gastroenterology, Oxford Radcliffe Hospital, Headington, Oxford, UK.

The aetiology and pathogenesis of PSC have not yet been clearly defined. The hypothesis that PSC is an immune mediated disease is supported by associations with HLA haplotypes, the presence of autoantibodies, increased levels of total serum immunoglobulins and the association with other autoimmune diseases. PSC does not, however, have many of the characteristics of classical autoimmunity, particularly the usual female preponderance of disease and lack of a good response to immunosuppression. Non-immune mechanisms such as bacterial infection, ischaemia and toxicity are also clearly important in the development of the disease and these factors may trigger peribiliary inflammation and cytokine-induced hepatic fibrosis. PSC may be triggered in genetically susceptible individuals by toxic or infectious agents gaining access to the liver via a diseased and permeable colon. PMID: 11492969.

________________________ Best regards,Dave (father of (23); PSC 07/03; UC 08/03)

> I was wondering if anyone knows the " why " behind the fatigue. > Jeannie

[Guest guest]

Jeannie,

I have UC and have been transplanted because

of PSC. I think mucus in the stool can be caused by PSC and/or IBD.

My UC has been under control for many years now, but shortly after diagnosis I

had this symptom a lot. I had it again when my biliruben was high due to

PSC – not enough bile to digest my foods, especially fat. Knowing

the relationship between the two diseases I would request a colonoscopy.

(Did I just suggest that you request a colonoscopy?????) It is the only

way you will know for sure.

I can’t really help you with the

fatigue question. I was fortunate not to have that as one of my symptoms

until really close to transplant. I do have it now post transplant –

guess I gotta be different.

Could my fatigue be related to leaky gut? I do on rare ocassions

see mucus in my stools.(fat?)

[Guest guest]

Jeannie,

I have UC and have been transplanted because

of PSC. I think mucus in the stool can be caused by PSC and/or IBD.

My UC has been under control for many years now, but shortly after diagnosis I

had this symptom a lot. I had it again when my biliruben was high due to

PSC – not enough bile to digest my foods, especially fat. Knowing

the relationship between the two diseases I would request a colonoscopy.

(Did I just suggest that you request a colonoscopy?????) It is the only

way you will know for sure.

I can’t really help you with the

fatigue question. I was fortunate not to have that as one of my symptoms

until really close to transplant. I do have it now post transplant –

guess I gotta be different.

Could my fatigue be related to leaky gut? I do on rare ocassions

see mucus in my stools.(fat?)

[Guest guest]

Jeannie,

I have UC and have been transplanted because

of PSC. I think mucus in the stool can be caused by PSC and/or IBD.

My UC has been under control for many years now, but shortly after diagnosis I

had this symptom a lot. I had it again when my biliruben was high due to

PSC – not enough bile to digest my foods, especially fat. Knowing

the relationship between the two diseases I would request a colonoscopy.

(Did I just suggest that you request a colonoscopy?????) It is the only

way you will know for sure.

I can’t really help you with the

fatigue question. I was fortunate not to have that as one of my symptoms

until really close to transplant. I do have it now post transplant –

guess I gotta be different.

Could my fatigue be related to leaky gut? I do on rare ocassions

see mucus in my stools.(fat?)

[Guest guest]

Thanks Joe,

 

I was thinking that I should request it after reading so much about the high incidence of the two together.  That way I'll know for sure.

 

I am sorry to hear that you are starting to have some fatigue. You never know with this disease, eh?

 

Jeannie

Jeannie,

 

I have UC and have been transplanted because of PSC.  I think mucus in the stool can be caused by PSC and/or IBD.  My UC has been under control for many years now, but shortly after diagnosis I had this symptom a lot.  I had it again when my biliruben was high due to PSC – not enough bile to digest my foods, especially fat.  Knowing the relationship between the two diseases I would request a colonoscopy.  (Did I just suggest that you request a colonoscopy?????)  It is the only way you will know for sure.

 

I can’t really help you with the fatigue question.  I was fortunate not to have that as one of my symptoms until really close to transplant.  I do have it now post transplant – guess I gotta be different.

 

  

 

Could my fatigue be related to leaky gut?  I do on rare ocassions see mucus in my stools.(fat?) 

 

[Guest guest]

Thanks Joe,

 

I was thinking that I should request it after reading so much about the high incidence of the two together.  That way I'll know for sure.

 

I am sorry to hear that you are starting to have some fatigue. You never know with this disease, eh?

 

Jeannie

Jeannie,

 

I have UC and have been transplanted because of PSC.  I think mucus in the stool can be caused by PSC and/or IBD.  My UC has been under control for many years now, but shortly after diagnosis I had this symptom a lot.  I had it again when my biliruben was high due to PSC – not enough bile to digest my foods, especially fat.  Knowing the relationship between the two diseases I would request a colonoscopy.  (Did I just suggest that you request a colonoscopy?????)  It is the only way you will know for sure.

 

I can’t really help you with the fatigue question.  I was fortunate not to have that as one of my symptoms until really close to transplant.  I do have it now post transplant – guess I gotta be different.

 

  

 

Could my fatigue be related to leaky gut?  I do on rare ocassions see mucus in my stools.(fat?) 

 

[Guest guest]

Thanks Joe,

 

I was thinking that I should request it after reading so much about the high incidence of the two together.  That way I'll know for sure.

 

I am sorry to hear that you are starting to have some fatigue. You never know with this disease, eh?

 

Jeannie

Jeannie,

 

I have UC and have been transplanted because of PSC.  I think mucus in the stool can be caused by PSC and/or IBD.  My UC has been under control for many years now, but shortly after diagnosis I had this symptom a lot.  I had it again when my biliruben was high due to PSC – not enough bile to digest my foods, especially fat.  Knowing the relationship between the two diseases I would request a colonoscopy.  (Did I just suggest that you request a colonoscopy?????)  It is the only way you will know for sure.

 

I can’t really help you with the fatigue question.  I was fortunate not to have that as one of my symptoms until really close to transplant.  I do have it now post transplant – guess I gotta be different.

 

  

 

Could my fatigue be related to leaky gut?  I do on rare ocassions see mucus in my stools.(fat?) 

 

[Guest guest]

Hi Jeannie,

Just an FYI - My son was diagnosed with PSC first…when the

doctor recommended doing a colonoscopy we agreed, but I thought it was really unnecessary

since he had never had any signs, symptoms or bowel problems. Much to our

surprise he was diagnosed with Crohn’s Disease…so you just never

know. I am glad that I agreed to the procedure and that we found out when

we did.

Together in the fight…Whatever it takes!

Joanne (mom of Todd, 23, PSC 01, Crohns 02, TX Twice 03, rPSC 05,

Diabetes 06, AIH overlap 08 & living life to the fullest 09)

Jeannie wrote: I haven't been required to have a colonoscopy...yet..

and don't believe I am suffering from any symptoms related to such. Do you

think that I should get one? Could my fatigue be related to leaky

gut? I do on rare ocassions see mucus in my stools.(fat?)

[Guest guest]

Dear Jeannie;

I know it's very difficult for anyone to learn about PSC, but especially for

those who are newly diagnosed, and their caregivers. I remember when my son was

diagnosed with PSC almost 6 years ago now ... I just felt totally helpless and

clueless.

But after reading over 100,000 abstracts and 60,000 full papers over the last 5+

years, I do feel like I understand a little more than I did, and feel better

prepared to recognize and deal with any complications that may arise in the

future. If I can share a little of that knowledge with the group, I am very

happy to do so.

However, I'm sure some people just think I'm obsessive/compulsive!

When it comes to colonoscopy, I think that it is generally recommended that

patients diagnosed with PSC should have one annually, and certainly one at

diagnsis to check for inflammatory bowel disease. When our son was initially

diagnosed with PSC the first thing that was recommended was a colonscopy to

check for ulcerative colitis, and even though he had no outward symptoms of UC,

they indeed found UC during that colonscopy. In hindsight I'm glad that this was

found as early as possible because after 12 months on Asacol there was marked

improvement in the appearance of his colon, and this improvement has persisted

to date, as a result of his maintenance dose of Asacol. As I understand it,

inflammatory bowel disease in PSC can often be 'silent' with no obvious outward

symptoms. The big danger of letting this inflammation persist for a long time is

that prolonged inflammation can lead to colon cancer.

(see section 5: Inflammatory Bowel Disease Associated with PSC, of this first

draft of a brochure on PSC Diagnosis)

http://www.psc-literature.org/PSCdiagnosis.pdf

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

[Guest guest]

> > > >

> > > > Hello all,

> > > >

> > > > I am a new member recently diagnosed with PSC in jan 09. What a great

> > > > blessing it is to have found this place! I have been learning more from

> > > > everyone's post than I possible could with my doc's. AND I HAVE A LOT

> > OF

> > > > QUESTIONS! ha ha

> > > >

> > > > A little bit about my case... I had been suffering from excruating

> > > > fatigue after a brutal bout with Epstien Barr Virus (mono) a few years

> > back

> > > > and felt as if I was getting some of my energy back when I had a

> > cholangitis

> > > > attack this past Nov 08. I had an ERCP done in Jan and after a quick

> > > > recovery from that I felt like I had more energy than I have had in

> > years.

> > > > Wow, was I feeling good. Unfortunetly, that feeling was short-lived. I

> > > > have found that the fatigue is returning. I used to be able to go all

> > day

> > > > long but lately I feel as if I loose steam halfway through my day.

> > Also, I

> > > > had been fairly active over the years in sports, and running, but for

> > last

> > > > six months find I am extremely sore after these activities and it takes

> > > > longer for me to get my energy back. I was wondering if these problems

> > are

> > > > PSC related? or if it's just a part of getting old (Turned 40 last

> > year.)

> > > > haha

> > > > I was wondering if anyone knows the " why " behind the fatigue. Is is

> > diet

> > > > related? Does anyone else have soreness with this disease? Thanks for

> > > > letting me take my turn.

> > > >

> > > > Thank you and blessings to all of you! I feel as if I have an extended

> > > > family now that I keep in my thoughts and prayers.

> > > >

> > > > Jeannie

> > > >

> > >

> >

> >

> >

>