Re: Hubby's Pain

September 29, 2010

before going in to what you could do, Id have to know if you live in Austrailia

or UK or the UNited States. Then I can get the right information to you, because

in the United states, there is a WAR on DRUGS and it is very very hard to obtain

the only drugs that are known by modern science to ease pain. If you live in a

country outside of the larger european and North American countries, then these

meds are just not available , period. Let me know which country you life in,

Love, bobby

________________________________

To: livercirrhosissupport

Sent: Tue, September 28, 2010 6:16:56 AM

Subject: Hubby's Pain

Hi all! Not much time this morning, but wanted to ask everyone about the 'kind'

of pain you have. Hubby has a lot of pain all the time. Currently not on any

pain meds. Last time he saw the doctor, last spring, I don't think his pain was

quite so bad. Seems to be worsening.

He has a lot of what he calls stomach pain. I think this is related to his

liver. Many times he hurts even when he hasn't eaten anything. But definitely

hurts after eating.

He also gets really bad headaches, without warning. They just come, then stay.

Will make him stop dead in his tracks. There aren't any OTC meds that help ease

his headaches or his stomach pain.

His body aches all the time. He's generally pretty weak and his gait/walk is

bad too. Just walking through the house is a chore for him. Most days, he

'slogs'. Legs weak and shaky and many times he stumbles and I'm afraid he's

going to fall. He also gets dizzy and lightheaded a lot, which contributes to

his lack of sure footedness.

I want to take him back to the doctor, but he says it's a waste of time and

money, there's nothing they'll do for him. I'm not convinced about that. I

think his doc needs to know the kind of pain he's experiencing.

He not only has NASH, he also has polycythemia and type 2 diabetes. Blood

glucose levels seem to be fine. Generally around 115 or so. Been very steady

these past few months. He takes 75 units of Lantus daily. When he remembers

it. He also takes 3000 mg metformin daily, 1-3xday. There's no tx for the

polycythemia except blood withdrawals. So he just gets to live with that.

Anyway, I'm just curious about the kind of pain that others are having. Are all

of these things a part of NASH symptoms or a combination of NASH & polycythemia?

Gotta' get the grandson up for school. Looking forward to hearing your

thoughts.

Thanks!

Twila

September 29, 2010

Bobby,

We live in the U.S. Central Iowa.

Thanks!

Twila

>

> before going in to what you could do, Id have to know if you live in

Austrailia

> or UK or the UNited States. Then I can get the right information to you,

because

> in the United states, there is a WAR on DRUGS and it is very very hard to

obtain

> the only drugs that are known by modern science to ease pain. If you live in a

> country outside of the larger european and North American countries, then

these

> meds are just not available , period. Let me know which country you life in,

> Love, bobby

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Tue, September 28, 2010 6:16:56 AM

> Subject: Hubby's Pain

>

> Hi all! Not much time this morning, but wanted to ask everyone about the

'kind'

> of pain you have. Hubby has a lot of pain all the time. Currently not on any

> pain meds. Last time he saw the doctor, last spring, I don't think his pain

was

> quite so bad. Seems to be worsening.

>

> He has a lot of what he calls stomach pain. I think this is related to his

> liver. Many times he hurts even when he hasn't eaten anything. But

definitely

> hurts after eating.

>

> He also gets really bad headaches, without warning. They just come, then

stay.

> Will make him stop dead in his tracks. There aren't any OTC meds that help

ease

> his headaches or his stomach pain.

>

> His body aches all the time. He's generally pretty weak and his gait/walk is

> bad too. Just walking through the house is a chore for him. Most days, he

> 'slogs'. Legs weak and shaky and many times he stumbles and I'm afraid he's

> going to fall. He also gets dizzy and lightheaded a lot, which contributes to

> his lack of sure footedness.

>

> I want to take him back to the doctor, but he says it's a waste of time and

> money, there's nothing they'll do for him. I'm not convinced about that. I

> think his doc needs to know the kind of pain he's experiencing.

>

> He not only has NASH, he also has polycythemia and type 2 diabetes. Blood

> glucose levels seem to be fine. Generally around 115 or so. Been very steady

> these past few months. He takes 75 units of Lantus daily. When he remembers

> it. He also takes 3000 mg metformin daily, 1-3xday. There's no tx for

the

> polycythemia except blood withdrawals. So he just gets to live with that.

>

> Anyway, I'm just curious about the kind of pain that others are having. Are

all

> of these things a part of NASH symptoms or a combination of NASH &

polycythemia?

>

> Gotta' get the grandson up for school. Looking forward to hearing your

> thoughts.

>

> Thanks!

> Twila

>

September 30, 2010

Ok, I know where that is. lol. I've actually been to Davenport. Nice town. OK,

Pain is nowdays thought of as a disease, separate from the underlying factor. It

is very very important to address it. Pain is known to cause elevated cortisol

and thyroid problems, as well as elevated blood pressure, and rapid heart

beat,and even whacked out blood glucose levels!. It will scrape extra days and

months off of a person's life. My wife and I both see a pain doctor, her for a

congenital brain stem defect, and me for an enlarged spleen, and pain in my

liver. They told me that liver pain is a mystery, that liver tissue was not

supposed to hurt, UNLESS the capsule is streatched. Now on my last CT, my CT

shows a stretched capsule from an unknown tumour.

If you should decide to do something about his

pain----------------------------------------

How to go about treating your husband's pain...

First, you need to by pass all the doctors who are NOT pain medicine

specialists, period. PCP, hepatologist, gastrointerologist, skip them all. See

if you can get his PCP to refer to a pain medicine specialist. Usually they go

by the name PHISYAtrist. They do things like sports medicine, or specialize in

car accident victims. A good one will help your husband be comfortable. It is

horrible to suffer without any pain medicine. I tried it for months. I lost 100

lbs because it hurt too much to eat. Finally, I was in the ER for the 8th time

that year(2006) and the ER doc was going to write me a prescription for

percocet. Then he changed his mind, and sent me out of there empty handed. I

fumed, and then got a referral to see my wife's pain doctor. He has been

treating me for almost 4 years now, and every thing I do in a day is because I

was able to get out of bed... because he took a chance and trusted me, and I

have a life again. Good luck, I hope he can get some help with his pain.

the handbook at this link is a must read.

http://f1.grp.yahoofs.com/v1/0ImkTEYoJzLTEXZbABE4SG8uU7xqbt0qDkRkbHNA0S-q-aplvzP\

XoRpqEXX6XcdemyLZvaYOnQK9XSqsIn_j/IntractablePainPtSurvivalHandbook.pdf

Love, Bobby.

________________________________

To: livercirrhosissupport

Sent: Wed, September 29, 2010 4:32:42 PM

Subject: Re: Hubby's Pain

Bobby,

We live in the U.S. Central Iowa.

Thanks!

Twila

>

> before going in to what you could do, Id have to know if you live in

Austrailia

>

> or UK or the UNited States. Then I can get the right information to you,

>because

>

> in the United states, there is a WAR on DRUGS and it is very very hard to

>obtain

>

> the only drugs that are known by modern science to ease pain. If you live in a

> country outside of the larger european and North American countries, then

these

>

> meds are just not available , period. Let me know which country you life in,

> Love, bobby

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Tue, September 28, 2010 6:16:56 AM

> Subject: Hubby's Pain

>

> Hi all! Not much time this morning, but wanted to ask everyone about the

>'kind'

>

> of pain you have. Hubby has a lot of pain all the time. Currently not on any

> pain meds. Last time he saw the doctor, last spring, I don't think his pain

>was

>

> quite so bad. Seems to be worsening.

>

> He has a lot of what he calls stomach pain. I think this is related to his

> liver. Many times he hurts even when he hasn't eaten anything. But

definitely

>

> hurts after eating.

>

> He also gets really bad headaches, without warning. They just come, then

stay.

>

> Will make him stop dead in his tracks. There aren't any OTC meds that help

>ease

>

> his headaches or his stomach pain.

>

> His body aches all the time. He's generally pretty weak and his gait/walk is

> bad too. Just walking through the house is a chore for him. Most days, he

> 'slogs'. Legs weak and shaky and many times he stumbles and I'm afraid he's

> going to fall. He also gets dizzy and lightheaded a lot, which contributes to

> his lack of sure footedness.

>

> I want to take him back to the doctor, but he says it's a waste of time and

> money, there's nothing they'll do for him. I'm not convinced about that. I

> think his doc needs to know the kind of pain he's experiencing.

>

> He not only has NASH, he also has polycythemia and type 2 diabetes. Blood

> glucose levels seem to be fine. Generally around 115 or so. Been very steady

> these past few months. He takes 75 units of Lantus daily. When he remembers

> it. He also takes 3000 mg metformin daily, 1-3xday. There's no tx for

the

>

> polycythemia except blood withdrawals. So he just gets to live with that.

>

> Anyway, I'm just curious about the kind of pain that others are having. Are

>all

>

> of these things a part of NASH symptoms or a combination of NASH &

>polycythemia?

>

> Gotta' get the grandson up for school. Looking forward to hearing your

> thoughts.

>

> Thanks!

> Twila

>

September 30, 2010

Hi Bobby,

They put me on MS Contin 15mg. I'm having a hard time getting used to

it and the doc. didn't explain it too well. I guess it's time

released and I seem to get the biggest dose hours after taking it. I

do like it because it lasts along time! The norco would go away in

about 2 hours. What are your doses and when is the best time to take

them? All my doctor said was don't chew them up. I guess because

you'd get all the med at once. So far they make me really

sleepy.....I don't like that part. I'm taking mine in the morning and

right before I go to bed. Probably sounds like a dumb question, but I

can't figure out when to take for the most effect. I go see doc in

about a week to see how it's working for me.

Much love,

Roni

> Ok, I know where that is. lol. I've actually been to Davenport. Nice

> town. OK,

> Pain is nowdays thought of as a disease, separate from the

> underlying factor. It

> is very very important to address it. Pain is known to cause

> elevated cortisol

> and thyroid problems, as well as elevated blood pressure, and rapid

> heart

> beat,and even whacked out blood glucose levels!. It will scrape

> extra days and

> months off of a person's life. My wife and I both see a pain doctor,

> her for a

> congenital brain stem defect, and me for an enlarged spleen, and

> pain in my

> liver. They told me that liver pain is a mystery, that liver tissue

> was not

> supposed to hurt, UNLESS the capsule is streatched. Now on my last

> CT, my CT

> shows a stretched capsule from an unknown tumour.

>

> If you should decide to do something about his

> pain----------------------------------------

>

> How to go about treating your husband's pain...

> First, you need to by pass all the doctors who are NOT pain medicine

> specialists, period. PCP, hepatologist, gastrointerologist, skip

> them all. See

> if you can get his PCP to refer to a pain medicine specialist.

> Usually they go

> by the name PHISYAtrist. They do things like sports medicine, or

> specialize in

> car accident victims. A good one will help your husband be

> comfortable. It is

> horrible to suffer without any pain medicine. I tried it for months.

> I lost 100

> lbs because it hurt too much to eat. Finally, I was in the ER for

> the 8th time

> that year(2006) and the ER doc was going to write me a prescription

> for

> percocet. Then he changed his mind, and sent me out of there empty

> handed. I

> fumed, and then got a referral to see my wife's pain doctor. He has

> been

> treating me for almost 4 years now, and every thing I do in a day is

> because I

> was able to get out of bed... because he took a chance and trusted

> me, and I

> have a life again. Good luck, I hope he can get some help with his

> pain.

> the handbook at this link is a must read.

>

http://f1.grp.yahoofs.com/v1/0ImkTEYoJzLTEXZbABE4SG8uU7xqbt0qDkRkbHNA0S-q-aplvzP\

XoRpqEXX6XcdemyLZvaYOnQK9XSqsIn_j/IntractablePainPtSurvivalHandbook.pdf

>

> Love, Bobby.

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Wed, September 29, 2010 4:32:42 PM

> Subject: Re: Hubby's Pain

>

> Bobby,

> We live in the U.S. Central Iowa.

>

> Thanks!

> Twila

>

> >

> > before going in to what you could do, Id have to know if you live

> in Austrailia

> >

> > or UK or the UNited States. Then I can get the right information

> to you,

> >because

> >

> > in the United states, there is a WAR on DRUGS and it is very very

> hard to

> >obtain

> >

> > the only drugs that are known by modern science to ease pain. If

> you live in a

>

> > country outside of the larger european and North American

> countries, then these

> >

> > meds are just not available , period. Let me know which country

> you life in,

> > Love, bobby

> >

> > ________________________________

> >

> > To: livercirrhosissupport

> > Sent: Tue, September 28, 2010 6:16:56 AM

> > Subject: Hubby's Pain

> >

> > Hi all! Not much time this morning, but wanted to ask everyone

> about the

> >'kind'

> >

> > of pain you have. Hubby has a lot of pain all the time. Currently

> not on any

>

> > pain meds. Last time he saw the doctor, last spring, I don't think

> his pain

> >was

> >

> > quite so bad. Seems to be worsening.

> >

> > He has a lot of what he calls stomach pain. I think this is

> related to his

> > liver. Many times he hurts even when he hasn't eaten anything. But

> definitely

> >

> > hurts after eating.

> >

> > He also gets really bad headaches, without warning. They just

> come, then stay.

> >

> > Will make him stop dead in his tracks. There aren't any OTC meds

> that help

> >ease

> >

> > his headaches or his stomach pain.

> >

> > His body aches all the time. He's generally pretty weak and his

> gait/walk is

> > bad too. Just walking through the house is a chore for him. Most

> days, he

> > 'slogs'. Legs weak and shaky and many times he stumbles and I'm

> afraid he's

> > going to fall. He also gets dizzy and lightheaded a lot, which

> contributes to

>

> > his lack of sure footedness.

> >

> > I want to take him back to the doctor, but he says it's a waste of

> time and

> > money, there's nothing they'll do for him. I'm not convinced about

> that. I

> > think his doc needs to know the kind of pain he's experiencing.

> >

> > He not only has NASH, he also has polycythemia and type 2

> diabetes. Blood

> > glucose levels seem to be fine. Generally around 115 or so. Been

> very steady

>

> > these past few months. He takes 75 units of Lantus daily. When he

> remembers

> > it. He also takes 3000 mg metformin daily, 1-3xday. There's no

> tx for the

> >

> > polycythemia except blood withdrawals. So he just gets to live

> with that.

> >

> > Anyway, I'm just curious about the kind of pain that others are

> having. Are

> >all

> >

> > of these things a part of NASH symptoms or a combination of NASH &

> >polycythemia?

> >

> > Gotta' get the grandson up for school. Looking forward to hearing

> your

> > thoughts.

> >

> > Thanks!

> > Twila

> >

September 30, 2010

Munchausen is a syndrome where a person makes up fake illnesses in order to get

attention. Munchausen *by proxy* is a similar syndrome where a person will get

thier kid sick, usually by poisioning in order to recieve attention as well.

I guess they thought I was making up all of my symptoms. Not long after that

indecent, I was diagnosed with hepatopulmonary syndrome. and they were diagnosed

with " egg on the face " syndrome.

As far as the pain medicine goes, I take 80 milligrams of Kadian every 12 hours.

It used to make me sleepy, but not so much now. It was a big giant change from

what my doctor called " the bolus effect " . A Bolus is a dose which raises the

blood level of a drug. Taking only a short acting pain killer does this, and

taking a long acting prevents it to a degree. Kadian is a much newer drug than

MS contin, and is much more evenly spread out than the older ones. The problem

is that it is so very very expensive. I am sure my insurance is going broke

because of me. It costs 700 dollars a month! I am hoping that you get used to

the MS contin, but I hope that it keeps working as well as it is now. We take

our meds like you, in the morning, and at bed time. We have a lot of very strict

rules that we follow in order to not OD. There is a special pill box with the

day and time on it, and if a pill is missed, then too bad, we cant double up,

we'd end up dead. Being out of the house during pill time is extra stressful,

because there are even more rules. One day we were on the handicap bus, and

Sharon said " time to take your pill " , but I thought I forgot it at home. I

couldnt remember if I had taken it at home, or if it was still in the special

box. Not wanting to take a chance, I skipped it. It turned out that I had

forgotten in the box, but better to be safe than sorry.

Extended release pills will usually kill a person who chews them, unless they

already have a large addiction and large tolerance. If you do the math, it would

be 4 -four hour doses all taken at once. Thats a lot of medicine.

Dont forget to take lots of fiber and drink plenty of water, and ask your doctor

about taking colace, or you could have problems.

Love, Bobby

________________________________

To: livercirrhosissupport

Sent: Thu, September 30, 2010 9:21:58 AM

Subject: Re: Hubby's Pain

Hi Bobby,

They put me on MS Contin 15mg. I'm having a hard time getting used to

it and the doc. didn't explain it too well. I guess it's time

released and I seem to get the biggest dose hours after taking it. I

do like it because it lasts along time! The norco would go away in

about 2 hours. What are your doses and when is the best time to take

them? All my doctor said was don't chew them up. I guess because

you'd get all the med at once. So far they make me really

sleepy.....I don't like that part. I'm taking mine in the morning and

right before I go to bed. Probably sounds like a dumb question, but I

can't figure out when to take for the most effect. I go see doc in

about a week to see how it's working for me.

Much love,

Roni

> Ok, I know where that is. lol. I've actually been to Davenport. Nice

> town. OK,

> Pain is nowdays thought of as a disease, separate from the

> underlying factor. It

> is very very important to address it. Pain is known to cause

> elevated cortisol

> and thyroid problems, as well as elevated blood pressure, and rapid

> heart

> beat,and even whacked out blood glucose levels!. It will scrape

> extra days and

> months off of a person's life. My wife and I both see a pain doctor,

> her for a

> congenital brain stem defect, and me for an enlarged spleen, and

> pain in my

> liver. They told me that liver pain is a mystery, that liver tissue

> was not

> supposed to hurt, UNLESS the capsule is streatched. Now on my last

> CT, my CT

> shows a stretched capsule from an unknown tumour.

>

> If you should decide to do something about his

> pain----------------------------------------

>

> How to go about treating your husband's pain...

> First, you need to by pass all the doctors who are NOT pain medicine

> specialists, period. PCP, hepatologist, gastrointerologist, skip

> them all. See

> if you can get his PCP to refer to a pain medicine specialist.

> Usually they go

> by the name PHISYAtrist. They do things like sports medicine, or

> specialize in

> car accident victims. A good one will help your husband be

> comfortable. It is

> horrible to suffer without any pain medicine. I tried it for months.

> I lost 100

> lbs because it hurt too much to eat. Finally, I was in the ER for

> the 8th time

> that year(2006) and the ER doc was going to write me a prescription

> for

> percocet. Then he changed his mind, and sent me out of there empty

> handed. I

> fumed, and then got a referral to see my wife's pain doctor. He has

> been

> treating me for almost 4 years now, and every thing I do in a day is

> because I

> was able to get out of bed... because he took a chance and trusted

> me, and I

> have a life again. Good luck, I hope he can get some help with his

> pain.

> the handbook at this link is a must read.

>http://f1.grp.yahoofs.com/v1/0ImkTEYoJzLTEXZbABE4SG8uU7xqbt0qDkRkbHNA0S-q-aplvz\

PXoRpqEXX6XcdemyLZvaYOnQK9XSqsIn_j/IntractablePainPtSurvivalHandbook.pdf

>f

>

> Love, Bobby.

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Wed, September 29, 2010 4:32:42 PM

> Subject: Re: Hubby's Pain

>

> Bobby,

> We live in the U.S. Central Iowa.

>

> Thanks!

> Twila

>

> >

> > before going in to what you could do, Id have to know if you live

> in Austrailia

> >

> > or UK or the UNited States. Then I can get the right information

> to you,

> >because

> >

> > in the United states, there is a WAR on DRUGS and it is very very

> hard to

> >obtain

> >

> > the only drugs that are known by modern science to ease pain. If

> you live in a

>

> > country outside of the larger european and North American

> countries, then these

> >

> > meds are just not available , period. Let me know which country

> you life in,

> > Love, bobby

> >

> > ________________________________

> >

> > To: livercirrhosissupport

> > Sent: Tue, September 28, 2010 6:16:56 AM

> > Subject: Hubby's Pain

> >

> > Hi all! Not much time this morning, but wanted to ask everyone

> about the

> >'kind'

> >

> > of pain you have. Hubby has a lot of pain all the time. Currently

> not on any

>

> > pain meds. Last time he saw the doctor, last spring, I don't think

> his pain

> >was

> >

> > quite so bad. Seems to be worsening.

> >

> > He has a lot of what he calls stomach pain. I think this is

> related to his

> > liver. Many times he hurts even when he hasn't eaten anything. But

> definitely

> >

> > hurts after eating.

> >

> > He also gets really bad headaches, without warning. They just

> come, then stay.

> >

> > Will make him stop dead in his tracks. There aren't any OTC meds

> that help

> >ease

> >

> > his headaches or his stomach pain.

> >

> > His body aches all the time. He's generally pretty weak and his

> gait/walk is

> > bad too. Just walking through the house is a chore for him. Most

> days, he

> > 'slogs'. Legs weak and shaky and many times he stumbles and I'm

> afraid he's

> > going to fall. He also gets dizzy and lightheaded a lot, which

> contributes to

>

> > his lack of sure footedness.

> >

> > I want to take him back to the doctor, but he says it's a waste of

> time and

> > money, there's nothing they'll do for him. I'm not convinced about

> that. I

> > think his doc needs to know the kind of pain he's experiencing.

> >

> > He not only has NASH, he also has polycythemia and type 2

> diabetes. Blood

> > glucose levels seem to be fine. Generally around 115 or so. Been

> very steady

>

> > these past few months. He takes 75 units of Lantus daily. When he

> remembers

> > it. He also takes 3000 mg metformin daily, 1-3xday. There's no

> tx for the

> >

> > polycythemia except blood withdrawals. So he just gets to live

> with that.

> >

> > Anyway, I'm just curious about the kind of pain that others are

> having. Are

> >all

> >

> > of these things a part of NASH symptoms or a combination of NASH &

> >polycythemia?

> >

> > Gotta' get the grandson up for school. Looking forward to hearing

> your

> > thoughts.

> >

> > Thanks!

> > Twila

> >

September 30, 2010

hi bobby,

how many pills do you take. i am pre tp and i take at least 20 to 26 pills per

day. a couple of then are over 1,200.

dollars a piece i know my insurance company must be freaking out.. since i have

been on this site i have never heard anyone talking about before tp and after tp

diet.and do you know what i can do for the leg and hand cramps they are so bad

sometimes i can't get up for hrs.and information would be helpful.

thanks, god bless

bev, tx

________________________________

To: livercirrhosissupport

Sent: Thu, September 30, 2010 5:34:09 PM