Re: Soup line rant

[Guest guest]

Clap clap! I think that (#&$( of a person that came in disguised as a doctor

should receive some kind of award for his performance!! I have NEVER EVER

heard of something so horrible! Even here on this list will all that we all go

through with doctors. For me, what sets your horrible experience aside is that

not only was he basically rude, uninformed and uninterested, but you waited

forever and never received any care. Then they made you feel like you were

deserving of any. Please correct me if that is not how you felt but that is what

I

got out of it all.

I do believe that most all of us have had our bad moments with doctors.

I just don't understand all the delays that you have had to endure and then

to be treated like you weren't really entitled and should be grateful for this

moran for skipping is coffee break!!

As far as insurance goes, I am under my husband's policy right now. The only

problem with it is that there is a set dollar limit for PT and OT. It is very

limited and it runs out fast. I will be getting Medicare in the Fall. I do

know that there are doctors out there that turn down Medicare patients which to

me is horrible. I know that their reimburssement is low but it just seems wrong

that you are on a government sponsered insurance basically but doctors don't

have to accept it.

I'm sorry. I have gone off on a tangent!!

I think that some kind of further action should be taken. Is there an

administrator of this group that you saw or someone that you can report them

to.?

Certainly a complaint can be put on their records and then the public would know

that something had gone on.

I think more important than all that (although some good healthy anger is

certainly in line here!) is how to get you some help. I know there must be a

reason you went to these guys. What about your primary care doc? Can he or she

make a good referral for you and also speak with the doctors. What about at

other

hospitals near by or at one of the big teaching hospitals elsewhere? I know

that there is something that can be done. I wish I had more answers for you.

You have every right to rant and rave! What a bunch of unprofessional, lazy

creeps!

In a message dated 4/9/2004 6:27:16 PM Eastern Daylight Time,

laxity@... writes:

So today I went back to the chronic pain group here. I have been going to

this teaching university clinic/hospital for about five years now for all my

EDS concerns. They are the ones who initially dxed myself and my two

daughters with HEDS

A year ago the chronic pain group promised to help me with my assorted pain

issues; asked me to name the top three; we'll go through them one at a time

and address each... yadda yadda. I felt encouraged that we were finally -

after five years - going to get all the issues eventually.

I chose the following three pain problems to address first:

1) pain in my leg; I think this is a shortened muscle. Initially they were

going to do a medial branch block in the lumbar spine to see if the problem

was my spondiliothesis area

2) tmj - for about four years I have been trying to get help with my

dislocating jaw. I wake and it is dislocated on one side. I needed a jaw

splint. To have it paid for the craniofacial surgeon had me have a sleep

study done which did show sleep apnea and the need for this brace and

The c-pap machine. Then I was sent off to the tmj specialist; who refused

my insurance and everything stopped there.

3) my bilateral thumb pain; feels like the bone is going to stick out the

base of the thumb muscle. The muscle and tissue is about four times the

size of a normal thumb; there is an obvious bone spur or something in there

and I need an xray to at least find out what is going on in there.

There were some issues that came up that I thought that we had ironed

through (the mmpi) and that things would get back on track once I met with

the pain shrink -- I did do this and signed a release to speak to other

therapists who have done testing in the past, be provided with copies of

that testing and also gave a letter from a professional, a phd, saying I was

receiving **no** secondary gain from my 'claims to pain'. I met their pain

shrink, we chatted. Still I did not hear from them and I called and

called; eventually got through to the initial doctor. When I went in to see

him he was to have met with my 'team' of doctors and they were going to come

up with 'the plan'. Well; I went in a month ago and he said they had not

met; yet, and felt they owed me a true assessment and wanted to meet with

'the team' first. I was confused; I thought this had already happened.

Waited another month and began calling and calling. Finally got a return

call; that they were meeting last Friday and would meet with me on this

Friday (today). I was still hopeful that something could be salvaged.

I went in today and a totally different doc came in. it is a 'teaching

hospital' and they sent this brand new doc in to tell me that their

recommendations were:

1) go to pt (they had held my pt instructions from a year ago waiting for

the appt after 'the team' met.) for back strengthening

2) join EDNF (I have been a member for years now)

3) find 'alternative' methods for my pain control (don¹t ask for pain

medications - which was not even something I had discussed with them yet)

This guy had not even read my file and I asked him why this change in

proposed treatment. Other then the fact that I had EDS - he knew nothing

about me. So he began reading my file with the usual list of pains that we

all have; all the gi concerns - everything listed in my top three concerns,

plus more - five pages full.

Then he closed the file and said; 'let me explain it this way: I think of

it as a resteraunt analogy where some people who have insurance get to go

the the four star restaurants; they have full courses; there is desert and

they are treated with the utmost respect. You have Medicare and Medicaid;

you go the restaurant with one star; the waiter is rude, the food is cold

and you don¹t get half the items you ordered. What you need to do is get the

list of providers from Medicare and see if you can find one of those who

specialize in EDS " he could tell I was getting more upset rather then less;

would not let me speak. He says 'Listen; I am only supposed to spend 15

minutes with you; but I am spending more in order to tell you these things.

I shouldn¹t even be telling you this much. In fact I have spent so much

time with you that I have missed my coffee break. I don¹t mind doing this

because you seem to think we are giving you the brush off; and I am trying

to explain to you what the situation is. " He actually told me to get a job

that paid good insurance so I could get the care I needed (duh) and he got

up to leave. So I said to him; " A year ago when I came here I only had

Medicare and Medicaid; you have a write-up there in my file discussing my

proposed initial three pain issues and what this pain group was planning on

doing with it. My insurance has not changed in the last year. Why was I

going to a four star restaurant a year ago and now I am standing in the soup

line?' and he shrugged and walked out the door.

So I am thinking I am completely out of health care now; even though I do

have insurance. It kind of astounds me. I have two insurances; both mean

nothing. I cant think of it too long without getting really angry or really

depressed. Yet I have to fix it; and I have less power over the situation.

People are on this list all the time; talking about their surgeries and

their medication; and I was already getting next to nothing. Now I am

getting even less.

So what is the deal? Are the people on this list with the surgeries and

medication being treated unnecessarily; or are people in my situation

actually expected to stand along the side lines and watch and keep our

mouths shut? Are we really expected to die earlier? Are people without

much insurance with brain cancer supposed to stand in line with me and shut

up -- or do they make exceptions for those people because they are

'terminal'? Of the non-terminal people with minimal insurance -- are they

all in line with me as well? Or was this some sort of red flag within the

group to no longer provide me with care?

It is difficult enough to read here and try to understand what types of

things can be done for people with EDS; then to have to decide; well

something *could* be done but I don¹t get offered that treatment.

Are only the people *with* insurance speaking up here? Of the 400 people on

the list how many are sitting around beating their heads against the

insurance walls and realizing that something could be done and they are

doing without? Are all those people getting the same line of garbage as I

am 'that's life -- just accept it - and shut up'?

Thank you sir; may I have some stale bread crust with my watered down soup

please?

[Guest guest]

Laxity,

I don't have a specific answer for you, but this is a CROC!!!! They made a

promise to you and BACKED OUT! So sorry! Get all your papers in order from

them and all you have done and go or call your US Congressman in your

District or their district office near you. No you do not accept it and

shut up! That sent the lower Dr. on the totem poll to tell you all this

garbage! I can't even say the words here. I am so angry at them. Everyone is

making cutbacks, and Medicare and Medicaid don't cut it with them, cuz they

are all greedy and these government health care programs pay out less . The

bottom line for just about all Doc's they don't care, they just want money

and a lot of it! This is terrible, so sorry to hear it. PT what a crock of

crap!!!! Get a job!!! Another crock of crap, you wouldn't have these useless

services if you could go to work! Call your Congressman! I'm so sorry!

Sincerely, S. Original Message -----

To: ceda >

Sent: Friday, April 09, 2004 6:25 PM

Subject: " Soup line " rant

So today I went back to the chronic pain group here. I have been going to

this teaching university clinic/hospital for about five years now for all my

EDS concerns. They are the ones who initially dxed myself and my two

daughters with HEDS

A year ago the chronic pain group promised to help me with my assorted pain

issues; asked me to name the top three; we'll go through them one at a time

and address each... yadda yadda. I felt encouraged that we were finally -

after five years - going to get all the issues eventually.

I chose the following three pain problems to address first:

1) pain in my leg; I think this is a shortened muscle. Initially they were

going to do a medial branch block in the lumbar spine to see if the problem

was my spondiliothesis area

2) tmj - for about four years I have been trying to get help with my

dislocating jaw. I wake and it is dislocated on one side. I needed a jaw

splint. To have it paid for the craniofacial surgeon had me have a sleep

study done which did show sleep apnea and the need for this brace and

The c-pap machine. Then I was sent off to the tmj specialist; who refused

my insurance and everything stopped there.

3) my bilateral thumb pain; feels like the bone is going to stick out the

base of the thumb muscle. The muscle and tissue is about four times the

size of a normal thumb; there is an obvious bone spur or something in there

and I need an xray to at least find out what is going on in there.

There were some issues that came up that I thought that we had ironed

through (the mmpi) and that things would get back on track once I met with

the pain shrink -- I did do this and signed a release to speak to other

therapists who have done testing in the past, be provided with copies of

that testing and also gave a letter from a professional, a phd, saying I was

receiving **no** secondary gain from my 'claims to pain'. I met their pain

shrink, we chatted. Still I did not hear from them and I called and

called; eventually got through to the initial doctor. When I went in to see

him he was to have met with my 'team' of doctors and they were going to come

up with 'the plan'. Well; I went in a month ago and he said they had not

met; yet, and felt they owed me a true assessment and wanted to meet with

'the team' first. I was confused; I thought this had already happened.

Waited another month and began calling and calling. Finally got a return

call; that they were meeting last Friday and would meet with me on this

Friday (today). I was still hopeful that something could be salvaged.

I went in today and a totally different doc came in. it is a 'teaching

hospital' and they sent this brand new doc in to tell me that their

recommendations were:

1) go to pt (they had held my pt instructions from a year ago waiting for

the appt after 'the team' met.) for back strengthening

2) join EDNF (I have been a member for years now)

3) find 'alternative' methods for my pain control (don¹t ask for pain

medications - which was not even something I had discussed with them yet)

This guy had not even read my file and I asked him why this change in

proposed treatment. Other then the fact that I had EDS - he knew nothing

about me. So he began reading my file with the usual list of pains that we

all have; all the gi concerns - everything listed in my top three concerns,

plus more - five pages full.

Then he closed the file and said; 'let me explain it this way: I think of

it as a resteraunt analogy where some people who have insurance get to go

the the four star restaurants; they have full courses; there is desert and

they are treated with the utmost respect. You have Medicare and Medicaid;

you go the restaurant with one star; the waiter is rude, the food is cold

and you don¹t get half the items you ordered. What you need to do is get the

list of providers from Medicare and see if you can find one of those who

specialize in EDS " he could tell I was getting more upset rather then less;

would not let me speak. He says 'Listen; I am only supposed to spend 15

minutes with you; but I am spending more in order to tell you these things.

I shouldn¹t even be telling you this much. In fact I have spent so much

time with you that I have missed my coffee break. I don¹t mind doing this

because you seem to think we are giving you the brush off; and I am trying

to explain to you what the situation is. " He actually told me to get a job

that paid good insurance so I could get the care I needed (duh) and he got

up to leave. So I said to him; " A year ago when I came here I only had

Medicare and Medicaid; you have a write-up there in my file discussing my

proposed initial three pain issues and what this pain group was planning on

doing with it. My insurance has not changed in the last year. Why was I

going to a four star restaurant a year ago and now I am standing in the soup

line?' and he shrugged and walked out the door.

So I am thinking I am completely out of health care now; even though I do

have insurance. It kind of astounds me. I have two insurances; both mean

nothing. I cant think of it too long without getting really angry or really

depressed. Yet I have to fix it; and I have less power over the situation.

People are on this list all the time; talking about their surgeries and

their medication; and I was already getting next to nothing. Now I am

getting even less.

So what is the deal? Are the people on this list with the surgeries and

medication being treated unnecessarily; or are people in my situation

actually expected to stand along the side lines and watch and keep our

mouths shut? Are we really expected to die earlier? Are people without

much insurance with brain cancer supposed to stand in line with me and shut

up -- or do they make exceptions for those people because they are

'terminal'? Of the non-terminal people with minimal insurance -- are they

all in line with me as well? Or was this some sort of red flag within the

group to no longer provide me with care?

It is difficult enough to read here and try to understand what types of

things can be done for people with EDS; then to have to decide; well

something *could* be done but I don¹t get offered that treatment.

Are only the people *with* insurance speaking up here? Of the 400 people on

the list how many are sitting around beating their heads against the

insurance walls and realizing that something could be done and they are

doing without? Are all those people getting the same line of garbage as I

am 'that's life -- just accept it - and shut up'?

Thank you sir; may I have some stale bread crust with my watered down soup

please?

To learn more about EDS, visit our website: http://members.rogers.com/ceda2/

[Guest guest]

Laxity,

I don't have a specific answer for you, but this is a CROC!!!! They made a

promise to you and BACKED OUT! So sorry! Get all your papers in order from

them and all you have done and go or call your US Congressman in your

District or their district office near you. No you do not accept it and

shut up! That sent the lower Dr. on the totem poll to tell you all this

garbage! I can't even say the words here. I am so angry at them. Everyone is

making cutbacks, and Medicare and Medicaid don't cut it with them, cuz they

are all greedy and these government health care programs pay out less . The

bottom line for just about all Doc's they don't care, they just want money

and a lot of it! This is terrible, so sorry to hear it. PT what a crock of

crap!!!! Get a job!!! Another crock of crap, you wouldn't have these useless

services if you could go to work! Call your Congressman! I'm so sorry!

Sincerely, S. Original Message -----

To: ceda >

Sent: Friday, April 09, 2004 6:25 PM

Subject: " Soup line " rant

So today I went back to the chronic pain group here. I have been going to

this teaching university clinic/hospital for about five years now for all my

EDS concerns. They are the ones who initially dxed myself and my two

daughters with HEDS

A year ago the chronic pain group promised to help me with my assorted pain

issues; asked me to name the top three; we'll go through them one at a time

and address each... yadda yadda. I felt encouraged that we were finally -

after five years - going to get all the issues eventually.

I chose the following three pain problems to address first:

1) pain in my leg; I think this is a shortened muscle. Initially they were

going to do a medial branch block in the lumbar spine to see if the problem

was my spondiliothesis area

2) tmj - for about four years I have been trying to get help with my

dislocating jaw. I wake and it is dislocated on one side. I needed a jaw

splint. To have it paid for the craniofacial surgeon had me have a sleep

study done which did show sleep apnea and the need for this brace and

The c-pap machine. Then I was sent off to the tmj specialist; who refused

my insurance and everything stopped there.

3) my bilateral thumb pain; feels like the bone is going to stick out the

base of the thumb muscle. The muscle and tissue is about four times the

size of a normal thumb; there is an obvious bone spur or something in there

and I need an xray to at least find out what is going on in there.

There were some issues that came up that I thought that we had ironed

through (the mmpi) and that things would get back on track once I met with

the pain shrink -- I did do this and signed a release to speak to other

therapists who have done testing in the past, be provided with copies of

that testing and also gave a letter from a professional, a phd, saying I was

receiving **no** secondary gain from my 'claims to pain'. I met their pain

shrink, we chatted. Still I did not hear from them and I called and

called; eventually got through to the initial doctor. When I went in to see

him he was to have met with my 'team' of doctors and they were going to come

up with 'the plan'. Well; I went in a month ago and he said they had not

met; yet, and felt they owed me a true assessment and wanted to meet with

'the team' first. I was confused; I thought this had already happened.

Waited another month and began calling and calling. Finally got a return

call; that they were meeting last Friday and would meet with me on this

Friday (today). I was still hopeful that something could be salvaged.

I went in today and a totally different doc came in. it is a 'teaching

hospital' and they sent this brand new doc in to tell me that their

recommendations were:

1) go to pt (they had held my pt instructions from a year ago waiting for

the appt after 'the team' met.) for back strengthening

2) join EDNF (I have been a member for years now)

3) find 'alternative' methods for my pain control (don¹t ask for pain

medications - which was not even something I had discussed with them yet)

This guy had not even read my file and I asked him why this change in

proposed treatment. Other then the fact that I had EDS - he knew nothing

about me. So he began reading my file with the usual list of pains that we

all have; all the gi concerns - everything listed in my top three concerns,

plus more - five pages full.

Then he closed the file and said; 'let me explain it this way: I think of

it as a resteraunt analogy where some people who have insurance get to go

the the four star restaurants; they have full courses; there is desert and

they are treated with the utmost respect. You have Medicare and Medicaid;

you go the restaurant with one star; the waiter is rude, the food is cold

and you don¹t get half the items you ordered. What you need to do is get the

list of providers from Medicare and see if you can find one of those who

specialize in EDS " he could tell I was getting more upset rather then less;

would not let me speak. He says 'Listen; I am only supposed to spend 15

minutes with you; but I am spending more in order to tell you these things.

I shouldn¹t even be telling you this much. In fact I have spent so much

time with you that I have missed my coffee break. I don¹t mind doing this

because you seem to think we are giving you the brush off; and I am trying

to explain to you what the situation is. " He actually told me to get a job

that paid good insurance so I could get the care I needed (duh) and he got

up to leave. So I said to him; " A year ago when I came here I only had

Medicare and Medicaid; you have a write-up there in my file discussing my

proposed initial three pain issues and what this pain group was planning on

doing with it. My insurance has not changed in the last year. Why was I

going to a four star restaurant a year ago and now I am standing in the soup

line?' and he shrugged and walked out the door.

So I am thinking I am completely out of health care now; even though I do

have insurance. It kind of astounds me. I have two insurances; both mean

nothing. I cant think of it too long without getting really angry or really

depressed. Yet I have to fix it; and I have less power over the situation.

People are on this list all the time; talking about their surgeries and

their medication; and I was already getting next to nothing. Now I am

getting even less.

So what is the deal? Are the people on this list with the surgeries and

medication being treated unnecessarily; or are people in my situation

actually expected to stand along the side lines and watch and keep our

mouths shut? Are we really expected to die earlier? Are people without

much insurance with brain cancer supposed to stand in line with me and shut

up -- or do they make exceptions for those people because they are

'terminal'? Of the non-terminal people with minimal insurance -- are they

all in line with me as well? Or was this some sort of red flag within the

group to no longer provide me with care?

It is difficult enough to read here and try to understand what types of

things can be done for people with EDS; then to have to decide; well

something *could* be done but I don¹t get offered that treatment.

Are only the people *with* insurance speaking up here? Of the 400 people on

the list how many are sitting around beating their heads against the

insurance walls and realizing that something could be done and they are

doing without? Are all those people getting the same line of garbage as I

am 'that's life -- just accept it - and shut up'?

Thank you sir; may I have some stale bread crust with my watered down soup

please?

To learn more about EDS, visit our website: http://members.rogers.com/ceda2/

[Guest guest]

I agree, and Laxity. There is no excuse for the way you were treated

Laxity. That person has to be the most unprofessional " doctor " I have ever

heard about. And as far as the pain group as a whole, they are even worse and

did not even have the guts to face you.

I thought these people took an oath when they graduated from medical school --

obviously these were absent that day!!!!! It really irritates me that it seems

like more and more doctors are in it for the " money " and to *#*#* with the

patient. Having or not having insurance should have NOTHING to do with

receiving medical care and I firmly believe there is a special place reserved

for these people who play at being " doctors " when they pass on (and it ain't

pretty!!!!!).

There are real doctors out there -- it just sometimes takes time and effort to

find them.

I agree with that you could start trying different ones - new referrals,

etc. I hope and wish all the best for you and will keep you in my prayers.

Love,, Patti

Re: " Soup line " rant

[Guest guest]

I agree, and Laxity. There is no excuse for the way you were treated

Laxity. That person has to be the most unprofessional " doctor " I have ever

heard about. And as far as the pain group as a whole, they are even worse and

did not even have the guts to face you.

I thought these people took an oath when they graduated from medical school --

obviously these were absent that day!!!!! It really irritates me that it seems

like more and more doctors are in it for the " money " and to *#*#* with the

patient. Having or not having insurance should have NOTHING to do with

receiving medical care and I firmly believe there is a special place reserved

for these people who play at being " doctors " when they pass on (and it ain't

pretty!!!!!).

There are real doctors out there -- it just sometimes takes time and effort to

find them.

I agree with that you could start trying different ones - new referrals,

etc. I hope and wish all the best for you and will keep you in my prayers.

Love,, Patti

Re: " Soup line " rant

[Guest guest]

You know, TJ, I just don't get it either! I don't know how one goes about

getting great medical care anymore! Does anyone know if this was sent to a

congressman or someone with pull, if it would do any good???? I really feel

for you, TJ! You are in my thoughts and prayers!

Try to hang in there, hopefully together, we can all get some answers!

Love Lana

Thank you sir; may I have some stale bread crust with my watered down soup

please?

[Guest guest]

You know, TJ, I just don't get it either! I don't know how one goes about

getting great medical care anymore! Does anyone know if this was sent to a

congressman or someone with pull, if it would do any good???? I really feel

for you, TJ! You are in my thoughts and prayers!

Try to hang in there, hopefully together, we can all get some answers!

Love Lana

Thank you sir; may I have some stale bread crust with my watered down soup

please?

[Guest guest]

Not sure Lana but think you got the wrong name in this e-mail......... I mean-

no problem lol but am sure your words were directed at some one else?

Hugs- TJ

God Bless And Hugs- Love Moon

RE: " Soup line " rant

You know, TJ, I just don't get it either! I don't know how one goes about

getting great medical care anymore! Does anyone know if this was sent to a

congressman or someone with pull, if it would do any good???? I really feel

for you, TJ! You are in my thoughts and prayers!

Try to hang in there, hopefully together, we can all get some answers!

Love Lana

Thank you sir; may I have some stale bread crust with my watered down soup

please?

[Guest guest]

Dear Laxity,

I know the deflated feeling you have right now. Frustrated, helpless and

mad. I agree with everyone else - these guys shouldn't be honored with the title

of Dr.

I do believe I remember Mark having a lot of difficulties earlier on. But I

think it was no insurance and when he did finally get Medicare he was able to

get some help.

Unfortunately these morons that pass themselves off as doctors can be found

everywhere, even in the best teaching hospitals. I happened to run into one that

was put in as a new head geneticist at a major teaching hospital. His

motivations were either name recognition with the papers he would publish from

his study (which meant he had to form the exact study group HE wanted) or the

hopes of money from same, not sure which, just know it wasn't in helping the

patients.

So as I say to everyone who runs up against these idiots - get thee to

another doc. It is awful that so much time was wasted on your end before they

were found out, but now that you know, you will not change them so I say don't

waste your valuable time on them.

Good Luck!

Hugs,

B.

HEDS, New Jersey, USA

[Guest guest]

Cindy;

Thank you for the reply. As I recall the pain doctors at the University

Hospital is the same center that I went to here in the Bay Area?

I don¹t think it is the insurance is the real issue either. A year ago they

gave me a very strong plan on what they were planning. I did not agree with

all they were planning I felt like I was finally going to be helped and felt

a strong surge or support.

I can't understand what it is though; political problems within that

organization? Something systemically wrong on the doctor level there?

Could you write me privately and let me know where it was you were finally

able to receive help?

On 4/10/04 5:18 AM, " ceda " ceda > wrote:

>

> Subject: Re: " Soup line " rant

>

> Laxity, I don't know if this will help, but the worse, cold hearted pain Drs

> we saw were at the University Hospital. One frustrating, degrading appointment

> after another. What I find strange is that I have private insurance and my

> primary says we will have better care and more options when Dylan gets the

> state insurance. I don't think it's all the insurance. Those Drs were just

> heartless cold idiots. I refused to play the waiting game with my sons pain.

> By the second appointment I could see if they were willing to really help. If

> they played their games, I searched for another Dr. Manytimes, I was so upset

> when I would call to get an appointment, I broke down and cried on the phone.

> I never planned to, but they got us in quickly. I know, with state insurance,

> there are some meds and procedures that aren't covered. And those with private

> insurance can have covered. It isn't fair, but for now that is the way it is,

> until it can be changed.

> This student Dr you saw has allot to learn about bedside manners. Sometimes I

> wish these people could live a couple days in our shoes. You have waited way

> to long to get help with your pain issues. Find another place to go.

> I fight insurance at least once a month. I saw a change when Dylan got a case

> worker. I don't have to fight as hard anymore. I call her and she does allot

> of it for me now. There is no good insurance when you have a real problem.

> None of them want to pay. I just don't take no for an answer, until I have

> exasted all options.

> Don't give up. Find the right Dr for you. Cindylouwho

[Guest guest]

; Thank you for your note of support.

Like you I think that this is 'more' then what others are usually greeted

with. I just can't figure out why.

I think this poor sap knew he got the short straw and was sent in to tell me

so the 'real' doctors did not have to say what the real issue was. This

doctor was someone I had never met, had not read my file, and was just

handed the file and told 'go tell her this' (I assume). I think he was just

the messenger. I don¹t even think there was a report written up - there was

nothing new in the file.

My original appointment from the doctors all meeting was a month previously.

That was my real doc; he gave me two choices " I can tell you what the

reports say; or you can have the doctors meet and discuss your case'. That

meeting was so confusing. I kept trying to figure out what he was saying.

The doctors were to have already met at that time. He would not tell me

what the reports said. Those reports were from the Marfan Clinic there, the

pain shrink doc, the physcial therapist, the physiotherapist, perhaps

something from the TMJ doc, my pcp. Now looking back; whatever the problem

is; he knew about it and disagreed with the decision.

I too think that I need to do something; but I don¹t even really know what

the problem really is; so I cant find the right answer. It can't be the

insurance; previously they covered all sorts of tests etc on my insurance;

sleep studies, neurologists, mris etc.

I don't even know who to address there. I think my own doc objected to what

they were saying and then he just disappeared into the fog; and 'the

messenger' was sent in. But who to complain to? And how? And what is the

real problem?

You asked about my pcp; I have only spoke to her two times. I was a hot

potatoe before her and she was the fourth pcp I was sent to; each of them

saying 'I can't deal with this' and passing me to someone else.

I just feel mentally, physically and emotionally depleted. The answer does

seem to be 'start over'; but I just feel too heartbroken (not sure if that

is the right word).

On 4/9/04 8:18 PM, " ceda " ceda > wrote:

> From: Mdmssmile@...

> Subject: Re: " Soup line " rant

>

> Clap clap! I think that (#&$( of a person that came in disguised as a doctor

> should receive some kind of award for his performance!! I have NEVER EVER

> heard of something so horrible! Even here on this list will all that we all go

> through with doctors. For me, what sets your horrible experience aside is that

> not only was he basically rude, uninformed and uninterested, but you waited

> forever and never received any care. Then they made you feel like you were

> deserving of any. Please correct me if that is not how you felt but that is

> what I

> got out of it all.

> I do believe that most all of us have had our bad moments with doctors.

> I just don't understand all the delays that you have had to endure and then

> to be treated like you weren't really entitled and should be grateful for this

> moran for skipping is coffee break!!

> As far as insurance goes, I am under my husband's policy right now. The only

> problem with it is that there is a set dollar limit for PT and OT. It is very

> limited and it runs out fast. I will be getting Medicare in the Fall. I do

> know that there are doctors out there that turn down Medicare patients which

> to

> me is horrible. I know that their reimburssement is low but it just seems

> wrong

> that you are on a government sponsered insurance basically but doctors don't

> have to accept it.

> I'm sorry. I have gone off on a tangent!!

> I think that some kind of further action should be taken. Is there an

> administrator of this group that you saw or someone that you can report them

> to.?

> Certainly a complaint can be put on their records and then the public would

> know

> that something had gone on.

>

> I think more important than all that (although some good healthy anger is

> certainly in line here!) is how to get you some help. I know there must be a

> reason you went to these guys. What about your primary care doc? Can he or she

> make a good referral for you and also speak with the doctors. What about at

> other

> hospitals near by or at one of the big teaching hospitals elsewhere? I know

> that there is something that can be done. I wish I had more answers for you.

> You have every right to rant and rave! What a bunch of unprofessional, lazy

> creeps!

>

[Guest guest]

Patti;

Thank you for taking the time to drop me a note of support.

Like you I feel they are a bunch of gutless wonders. I would like to do

something to awknowledge the fact that I see them as the bunch of weasels

and that they thought that they could hide what the issue was behind some

clueless sap that they sent in the room. (I like the idea of them going to

a special 'doctor hell' by the way)

On 4/9/04 8:18 PM, " ceda " ceda > wrote:

>

> Subject: Re: " Soup line " rant

>

> I agree, and Laxity. There is no excuse for the way you were treated

> Laxity. That person has to be the most unprofessional " doctor " I have ever

> heard about. And as far as the pain group as a whole, they are even worse and

> did not even have the guts to face you.

>

> I thought these people took an oath when they graduated from medical school

> -- obviously these were absent that day!!!!! It really irritates me that it

> seems like more and more doctors are in it for the " money " and to *#*#* with

> the patient. Having or not having insurance should have NOTHING to do with

> receiving medical care and I firmly believe there is a special place reserved

> for these people who play at being " doctors " when they pass on (and it ain't

> pretty!!!!!).

>

> There are real doctors out there -- it just sometimes takes time and effort to

> find them.

>

> I agree with that you could start trying different ones - new

> referrals, etc. I hope and wish all the best for you and will keep you in my

> prayers.

>

> Love,, Patti

[Guest guest]

Patti;

Thank you for taking the time to drop me a note of support.

Like you I feel they are a bunch of gutless wonders. I would like to do

something to awknowledge the fact that I see them as the bunch of weasels

and that they thought that they could hide what the issue was behind some

clueless sap that they sent in the room. (I like the idea of them going to

a special 'doctor hell' by the way)

On 4/9/04 8:18 PM, " ceda " ceda > wrote:

>

> Subject: Re: " Soup line " rant

>

> I agree, and Laxity. There is no excuse for the way you were treated

> Laxity. That person has to be the most unprofessional " doctor " I have ever

> heard about. And as far as the pain group as a whole, they are even worse and

> did not even have the guts to face you.

>

> I thought these people took an oath when they graduated from medical school

> -- obviously these were absent that day!!!!! It really irritates me that it

> seems like more and more doctors are in it for the " money " and to *#*#* with

> the patient. Having or not having insurance should have NOTHING to do with

> receiving medical care and I firmly believe there is a special place reserved

> for these people who play at being " doctors " when they pass on (and it ain't

> pretty!!!!!).

>

> There are real doctors out there -- it just sometimes takes time and effort to

> find them.

>

> I agree with that you could start trying different ones - new

> referrals, etc. I hope and wish all the best for you and will keep you in my

> prayers.

>

> Love,, Patti

[Guest guest]

Patti;

Thank you for taking the time to drop me a note of support.

Like you I feel they are a bunch of gutless wonders. I would like to do

something to awknowledge the fact that I see them as the bunch of weasels

and that they thought that they could hide what the issue was behind some

clueless sap that they sent in the room. (I like the idea of them going to

a special 'doctor hell' by the way)

On 4/9/04 8:18 PM, " ceda " ceda > wrote:

>

> Subject: Re: " Soup line " rant

>

> I agree, and Laxity. There is no excuse for the way you were treated

> Laxity. That person has to be the most unprofessional " doctor " I have ever

> heard about. And as far as the pain group as a whole, they are even worse and

> did not even have the guts to face you.

>

> I thought these people took an oath when they graduated from medical school

> -- obviously these were absent that day!!!!! It really irritates me that it

> seems like more and more doctors are in it for the " money " and to *#*#* with

> the patient. Having or not having insurance should have NOTHING to do with

> receiving medical care and I firmly believe there is a special place reserved

> for these people who play at being " doctors " when they pass on (and it ain't

> pretty!!!!!).

>

> There are real doctors out there -- it just sometimes takes time and effort to

> find them.

>

> I agree with that you could start trying different ones - new

> referrals, etc. I hope and wish all the best for you and will keep you in my

> prayers.

>

> Love,, Patti

[Guest guest]

Lana; thank you for your note of support.

I haven't contacted a congressman. I don't even know if insurance is the

real issue. If it is; what a sad pathetic world we have turned out to be.

And like you say; would my letter even be read? And if read would it change

anything? If forced to help me could I trust them? If forced to help me

would I ever let them put a knife on me? If forced to help me do I want them

treating me in the ER where who knows what can happen?

Thanks again for your note.

On 4/9/04 8:18 PM, " ceda " ceda > wrote:

>

> Subject: RE: " Soup line " rant

>

> You know, TJ, I just don't get it either! I don't know how one goes about

> getting great medical care anymore! Does anyone know if this was sent to a

> congressman or someone with pull, if it would do any good???? I really feel

> for you, TJ! You are in my thoughts and prayers!

>

> Try to hang in there, hopefully together, we can all get some answers!

>

> Love Lana

>

> Thank you sir; may I have some stale bread crust with my watered down soup

> please?

[Guest guest]

Lana; thank you for your note of support.

I haven't contacted a congressman. I don't even know if insurance is the

real issue. If it is; what a sad pathetic world we have turned out to be.

And like you say; would my letter even be read? And if read would it change

anything? If forced to help me could I trust them? If forced to help me

would I ever let them put a knife on me? If forced to help me do I want them

treating me in the ER where who knows what can happen?

Thanks again for your note.

On 4/9/04 8:18 PM, " ceda " ceda > wrote:

>

> Subject: RE: " Soup line " rant

>

> You know, TJ, I just don't get it either! I don't know how one goes about

> getting great medical care anymore! Does anyone know if this was sent to a

> congressman or someone with pull, if it would do any good???? I really feel

> for you, TJ! You are in my thoughts and prayers!

>

> Try to hang in there, hopefully together, we can all get some answers!

>

> Love Lana

>

> Thank you sir; may I have some stale bread crust with my watered down soup

> please?

[Guest guest]

Lana; thank you for your note of support.

I haven't contacted a congressman. I don't even know if insurance is the

real issue. If it is; what a sad pathetic world we have turned out to be.

And like you say; would my letter even be read? And if read would it change

anything? If forced to help me could I trust them? If forced to help me

would I ever let them put a knife on me? If forced to help me do I want them

treating me in the ER where who knows what can happen?

Thanks again for your note.

On 4/9/04 8:18 PM, " ceda " ceda > wrote:

>

> Subject: RE: " Soup line " rant

>

> You know, TJ, I just don't get it either! I don't know how one goes about

> getting great medical care anymore! Does anyone know if this was sent to a

> congressman or someone with pull, if it would do any good???? I really feel

> for you, TJ! You are in my thoughts and prayers!

>

> Try to hang in there, hopefully together, we can all get some answers!

>

> Love Lana

>

> Thank you sir; may I have some stale bread crust with my watered down soup

> please?

[Guest guest]

Patti; I was thinking of this too. Locally we have a tv station that will

investigate issues of fraud etc. I don¹t know that they would take up a

mission like this. On the grand scale of things; I have two types of

insurance; and there are many many in this area who have nothing.

Yes; it is difficult even in the best of times not to be cynical.

On 4/9/04 8:18 PM, " ceda " ceda > wrote:

>

> Subject: Re: " Soup line " rant

>

> Perhaps, sending it to one of those shows such as 60 minutes or 20/20 would be

> good, too. I'm sure there are many many people here in the US who have to put

> up with this type of non-care care and are being insulted in the process.

> Even those of us with insurance aren't immune to this kind of treatment.

> Perhaps, the AMA, too --- do they have an ethics board? It is said that we

> have one of the best medical care systems in the world --- well, if so, I'd

> like to know where it is (perhaps it is reserved for those in power??), cause

> I haven't seen it.

>

> Sorry I guess I'm being really cynical -- so I'll stop now.

> Sorry, again and thanks for listening.

>

> Love, Patti

[Guest guest]

Patti; I was thinking of this too. Locally we have a tv station that will

investigate issues of fraud etc. I don¹t know that they would take up a

mission like this. On the grand scale of things; I have two types of

insurance; and there are many many in this area who have nothing.

Yes; it is difficult even in the best of times not to be cynical.

On 4/9/04 8:18 PM, " ceda " ceda > wrote:

>

> Subject: Re: " Soup line " rant

>

> Perhaps, sending it to one of those shows such as 60 minutes or 20/20 would be

> good, too. I'm sure there are many many people here in the US who have to put

> up with this type of non-care care and are being insulted in the process.

> Even those of us with insurance aren't immune to this kind of treatment.

> Perhaps, the AMA, too --- do they have an ethics board? It is said that we

> have one of the best medical care systems in the world --- well, if so, I'd

> like to know where it is (perhaps it is reserved for those in power??), cause

> I haven't seen it.

>

> Sorry I guess I'm being really cynical -- so I'll stop now.

> Sorry, again and thanks for listening.

>

> Love, Patti

[Guest guest]

;

Thank you for the reply. This pain group is run by anethesiologists.

I have been looking on the web for info about the clinic I went to. I did a

search in google groups and found many many stories like mine. I also found

an article my doctor had written.

There have been evidently other people in similar situations as mine. Here

are some typical posts about them

(pasted) ...

Anyone considering using this program needs to be aware of how they

work. ... when I could no longer function without pain meds I was

labeled a " drug seeker " My chart was flagged and the ER was warned and

told " under no circumstanses was this patient to be given any type of

narcotic " My doctors were all contacted and told not give me any

drugs. This left me desperate. I had to leave all my doctors and start

from scratch ... I could not even transfer records ... because I would

be tagged a troublemaker from the start.

(end of paste)

Here is another

(pasted)

... i had my brain surgery there...wonderful experience. So when i got

into their pain clinic i thought they'd send me into a new path with my

pain. Dead bullfrog. Nothing. ... so the psych part of the clinic (i

had four one-hour exams with different dr's) said the pain is due to

depression. Hell, i was in a good mood that day... Other pain clinics

have been as disappointing, but i had higher expectations due to my

previous encounters...

(end of paste)

Another

(pasted)

... University Hospital's pain clinic. I once worked as a unit

secretary and would sometimes be assigned to the floor where they had

the inpatient pain patients and psychiatric patients mixed together.

Some of the psych patients had some very strange medical /psych

problems. The poor pain patients were exposed to all of this and it

seemed like the chronic pain patients were all assumed to have mainly

psychiatric causes for their chronic pain, and that psychiatry was the

best treatment. All patients had to have a psychiatrist see them during

their entire stay, or they would not be admitted to the unit...

(end of paste)

Another

(pasted)...

I did go to the ... Pain clinic (both out-patient and in-patient)...

Their thing was basically to try and prove that it is " All in your head "

because this is what they did: Put me on a Pain Cocktail; they wrote up

the script and sealed it in an envelope, so you wouldn't know the dose

of Methadone and Baclofen that was in the mix...I could have cared less

if it would have worked--But it didn't.. And they varied the amounts

every refill... "

(end of paste)

Another

(pasted)

... This is exactly the same program that... hospital has. If you don't

fit into their program you are labeled a drug seeker. They even destroy

any relationship you have with doctors when you enter the program

because you are required to sign a release so they can talk to your

doctors and then they tell them not to ever give you narcotics. ...

The only thing they are good for is ruining peoples lives!!!!!!!!!!!!!

(end of paste)

Another

(pasted)

... I think you may have made a wise decision not to go to...

inpatient pain management program. I thought that I wanted to go there

in 1995 and had the psychiatrist that was treating me for pain related

depression look into it for me. She has admitting privileges at...

and was a teaching faculty member at the university. She checked it out

and advised me not to go. The pain program patients were admitted to the

medical/psychiatric unit. The patients on that unit were a mixture of

mentally ill patients with real or imagined medical problems, eating

disorder patients, mentally ill patients that were wheelchair bound that

would have been on the regular psychiatric unit if they had been able to

dress, feed, bathe themselves, and get in and out of bed without

assistance. Sometimes there would be only one chronic pain patient on

the unit, often none at all. There were only 12 or 13 beds on the

entire unit . Sometimes there would be psychiatric patients with

absolutely no medical problems at all. Also, there were few private

rooms, and those usually went to the eating disorder patients. ... My

paychiatrist said that because I wasn't mentally ill, she was extremely

opposed to my being admitted there. She felt that there should be a

separate unit for pain patients....

(end of paste)

Here is part of the article written by the doctor

(pasted)

.... there appears to be a significant disparity between subjective

complaints and objective findings. The patient may present with various

exaggerated pain behaviors-such as limping, moaning, groaning, and

grimacing-while the physical examination and various tests may not reveal

any obvious pathology. These individuals remain symptomatic longer, stay off

work for prolonged periods of time (if they go back at all), and they tend

to utilize a disproportionate share of healthcare resources. They are often

labeled symptom magnifiers, elaborators, or exaggerators. We hear terms like

hysteria, functional overlay, somatization, and chronic pain syndrome....

Many of these individuals are subjected to repeated and varied medical

interventions, sometimes leading to untoward side effects and iatrogenic

(physician-created) complications. ... Sometimes physicians continue to

search for the " Holy Grail " to identify the pain generator. After all, if it

can be found, it can be fixed, can't it? Perhaps there is another

explanation... Well trained and experienced Pain Medicine physicians know

that the extent of a patient's subjective complaints often have more to do

with developmental, psychological, social, and cultural factors than with

physical pathology. In fact, the seasoned pain specialist recognizes that

there is risk of iatrogenic complications when the focus is on pathology,

without the realization that other nonphysical factors may be playing a

significant role in the clinical presentation. Some patients who present

with musculoskeletal pain complaints have underlying nonorganic or

behavioral problems that may not be immediately apparent. These nonorganic

causes of pain may be a deliberate deception (consciously aware)-such as

malingering-in order to obtain secondary gain or factitious disorder in

which the patient seeks to occupy the sick role. The causes may also be due

to a process unknown to the patient (not consciously aware) such as with

somatoform disorders. ... Risk factors for malingering include: (a) ongoing

litigation, ( significant discrepancy between subjective disability and

objective findings, © lack of cooperation with the evaluation and with

treatment, and (d) the presence of antisocial personality disorder. The

latter is marked by a history of unlawful behavior, aggressive behavior,

deceitful behavior, consistent irresponsibility, and lack of remorse for

wrongdoing. ... In factitious disorder, patients who want to occupy the sick

role consciously fabricate symptoms to attract the attention of physicians.

The patient with a factitious presentation not uncommonly agrees to

unnecessary surgery and interventions, which the malingerer will not. The

factitious patient is motivated by psychological needs, not external gain as

in the case of the malingering patient. These unmet needs may include a need

for attention, a desire to gain nurturance, or other intrapsychic issues.

The most severe and persistent form of factitious disorder is called

Munchausen syndrome ... In Munchausen syndrome, the individual intentionally

produces clinically convincing physical and laboratory signs of disease in

order to obtain medical treatment. These individuals will inject themselves

to produce swelling or infection, ingest agents to distort their laboratory

findings, rub irritants on their skin to produce rashes, or wear splints or

braces unnecessarily. Over time, their medical records show extensive

workups for convincing signs and symptoms, which change as the originally

suspected disorder is on the verge of being ruled out. These individuals

need treatment for their underling psychiatric disorder, although affecting

behavior change for this group is often quite difficult. ... There are

several subtypes of Somatoform Disorders. Somatization Disorder, for

example, involves a variety of physiologic symptoms, such as pain, G.I.

disturbance, sexual symptoms, and pseudoneurological symptoms-such as

paralysis, weakness, blindness, etc. There must be symptoms in each of these

areas to meet the criteria for diagnosis and the symptoms cannot be fully

explained by the medical work-up. Somatization Disorder is different from a

patient who uses somatization as a " defense mechanism. " In the latter, the

term is used more broadly to characterize patients who tend to develop

physical symptoms to manifest emotional distress. That is, all patients with

a Somatoform Disorder of some type employ somatization as a defense. ...

Another very common subtype of Somatoform problems is called Pain Disorder.

For this problem, the criteria are relatively loose. Pain must be the

predominant focus. There often is some form of physical etiology, but

psychological factors must play a role in the onset, severity, exacerbation,

or maintenance of the pain. A Somatoform diagnosis does not mean there is

no physical pathology or illness but that these behavioral symptoms can

coexist with, mask, and facilitate real illness. ... Factors that have been

found to contribute to somatization can be recognized and described by:

* Abuse or emotional deprivation in childhood

* Adult acute personal turmoil often involving abandonment and/or

increased responsibilities

* Societal roles

* Learned behavior

* Secondary gain

* Cultural factors

* Seeking redress for a perceived wrong

* Personality factors (particularly histrionic, narcissistic, and

borderline personality traits)

.... Some individuals do not understand the cause and meaning of their pain.

They may interpret the pain signal as implying some sinister pathology or

believe that nothing can be done to bring relief. Imagine the relatively

uneducated patient with a back sprain who is discovered to have a

spondylolysis on x-ray. This finding of a lumbar pars interarticularis

" fracture " may have been present since childhood and may be of no clinical

significance, yet the patient may report thereafter the presence of a

" fractured " spine and the inability to do anything out of fear. ... grouped

eight signs into five types. These five types-or categories of signs-are

tenderness, simulation, distraction, regional disturbances, and

overreaction. The presence of three or more of these signs is considered a

positive finding and is associated with other clinical measures of illness

behavior and psychological distress, suggesting the patient does not have a

straightforward medical problem.

* Tenderness: Superficial and non-anatomic skin discomfort on

palpation. Tenderness related to physical disease is usually localized.

Physical back pain does not make the skin tender to light touch.

Simulation: Axial loading or simulated rotation with report of low back

pain. Pressure on the top of the head (axial loading) of a standing patient

should not cause low back pain. When the shoulders and pelvis are rotated in

unison (simulated rotation), the structures in the back are not stressed. If

the patient reports back pain with this maneuver, the test is considered

positive for a nonorganic source of the patient's complaints.

* Distraction: In the standard straight-leg raise test, the patient

is recumbent and aware of the test being performed. In contrast, a

distracted straight-leg raise test is performed anytime the hip is flexed

with the knee straight. The distracted straight-leg raise test can be done

by examining the foot with the patient seated with one knee extended.

Another example of a distraction test would be when the patient uses the

injured limb when distracted.

* Regional Disturbances: Sensory change or weakness. Any widespread

or global numbness that involves an entire extremity (stocking, glove) or

side of the body and does not follow expected neurologic patterns is

suspect. Regional, sudden, or uneven weakness (cogwheeling, giving way,

breakaway) is a nonorganic, behavioral sign.

* Overreaction: The patient may be hypersensitive to light touch at

one point during examination but later give no response to touching of the

same area. This is a positive sign of overreaction, as evidenced by a

disproportionate grimace, tremor, exaggerated verbalizations, sweating, or

collapse. Other behavioral signs include inappropriate sighing, guarding,

bracing, and rubbing; insistence on standing or changing position; and

questionable use of walking aids or equipment.

.... It is also important to assess the patient's perception of the cause,

meaning, and impact of the pain. If the patient believes that the cause is

tissue damage, which means that activity will result in the progression of

an illness, it will be difficult to get the individual to engage in a

functionally-oriented physical rehabilitation program. Treatment must be

preceded by a cognitive shift, such that the patient no longer sees the

illness as progressive and sinister. If movement, despite pain, is perceived

as " safe, " then rehabilitation can ensue. ... Many patients do not believe

they have a psychological problem and may feel that their physician is not

taking them seriously. Preparing patients for psychological referral is an

important and artful step. Adopting an educational approach is preferred as

it is nonaccusatory and integrative. Especially in the absence of

significant physical findings, the physician should educate the patient

about the mind-body connection and explain the role that negative emotions

play in symptom production, symptom perception, and illness behavior. It is

important to legitimize the patient's symptoms. In an empathic manner, the

physician should make a referral to a psychologist and/or psychiatrist,

explaining that by addressing their emotional state they will feel better

psychologically, and this will also help them heal and learn

symptom-management techniques. In addition, psychotropic medications are

particularly helpful when the physical complaints are a manifestation of

underlying depression or anxiety, and research has shown that antidepressant

medication can have an analgesic effect as well. ... Psychological treatment

approaches used to treat somatization include cognitive-behavioral

treatment, relaxation training, and psychotherapy (both group and family).

Patients with somatoform tendencies often feel a strong need to have their

pain validated. They have experienced test after test, often without

positive finding of organic disease, despite knowing that " something is

definitely wrong. " A useful technique is to inform them that they do in fact

have a real medical problem - one that is related to their autonomic nervous

system and that it is not " all in their head. " The physician can take the

role of educator, explaining that the symptoms are due to a disorder of the

autonomic nervous system, which can be present despite " normal " diagnostic

tests. After gaining confidence with the patient, an effort is made to

identify psychosocial stressors that worsen the patient's pain complaint and

draw a link between these stressors and the disordered autonomic nervous

system. ... Patients occasionally present with complaints that far exceed

the objective pathology. For some, physical symptoms serve as a focus for

getting attention and remuneration, as well as a means to avoid personal and

work responsibilities. For others, physical symptoms can be an expression of

psychosocial or emotional conflict. Healthcare practitioners treating these

individuals may focus on the complaints, assume a correlation between

findings on tests and procedures with the level of symptoms, and go forward

with a variety of treatments while psychological, social, and cultural

factors may significantly (or in some cases solely) contribute to the

patient's presentation. This type of approach, unfortunately, reinforces

dysfunction and disability, and may result in iatrogenic complications. ...

On 4/11/04 7:07 AM, " ceda " ceda > wrote:

>

> Subject: Re: Re: " Soup line " rant

>

> You wrote -

>

> " I get the impression that since chronic pain has refused to help that now

> these others will follow suit; the chronic pain group was their solution for

> my problems as

> well.

> I don¹t know what to do. To wait too long could be disasterous. "

>

> I suggest you look for another pain management facility. There are ones

> that are privately run by docs, usually anethesiologists (sp?). I agree that

> the other docs could shrug you off using this as an excuse. Mostly because

> most of them probably really can not help you and they are hoping that if you

> can get your pain under control most of your problems will lessen making only

> " main " ones stand out. Unfortunately most of the time docs either won't (due

> to high potential of recurrance or failure) or can't really fix much with us.

> Of course you never know until you ask though :-)

>

> I looked in one of our phone books and couldn't find an easy way to look up

> pain management facilities. You may want to contact Medicare (or maybe they

> have a website that does it) to get a listing of pain management facilities in

> your area that take Medicare.

>

> Continue to pursue this. It can really make a difference in your life to

> have some pain control. It is worth fighting for!

>

> Hugs,

> B.

> HEDS, New Jersey, USA

[Guest guest]

;

Thank you for the reply. This pain group is run by anethesiologists.

I have been looking on the web for info about the clinic I went to. I did a

search in google groups and found many many stories like mine. I also found

an article my doctor had written.

There have been evidently other people in similar situations as mine. Here

are some typical posts about them

(pasted) ...

Anyone considering using this program needs to be aware of how they

work. ... when I could no longer function without pain meds I was

labeled a " drug seeker " My chart was flagged and the ER was warned and

told " under no circumstanses was this patient to be given any type of

narcotic " My doctors were all contacted and told not give me any

drugs. This left me desperate. I had to leave all my doctors and start

from scratch ... I could not even transfer records ... because I would

be tagged a troublemaker from the start.

(end of paste)

Here is another

(pasted)

... i had my brain surgery there...wonderful experience. So when i got

into their pain clinic i thought they'd send me into a new path with my

pain. Dead bullfrog. Nothing. ... so the psych part of the clinic (i

had four one-hour exams with different dr's) said the pain is due to

depression. Hell, i was in a good mood that day... Other pain clinics

have been as disappointing, but i had higher expectations due to my

previous encounters...

(end of paste)

Another

(pasted)

... University Hospital's pain clinic. I once worked as a unit

secretary and would sometimes be assigned to the floor where they had

the inpatient pain patients and psychiatric patients mixed together.

Some of the psych patients had some very strange medical /psych

problems. The poor pain patients were exposed to all of this and it

seemed like the chronic pain patients were all assumed to have mainly

psychiatric causes for their chronic pain, and that psychiatry was the

best treatment. All patients had to have a psychiatrist see them during

their entire stay, or they would not be admitted to the unit...

(end of paste)

Another

(pasted)...

I did go to the ... Pain clinic (both out-patient and in-patient)...

Their thing was basically to try and prove that it is " All in your head "

because this is what they did: Put me on a Pain Cocktail; they wrote up

the script and sealed it in an envelope, so you wouldn't know the dose

of Methadone and Baclofen that was in the mix...I could have cared less

if it would have worked--But it didn't.. And they varied the amounts

every refill... "

(end of paste)

Another

(pasted)

... This is exactly the same program that... hospital has. If you don't

fit into their program you are labeled a drug seeker. They even destroy

any relationship you have with doctors when you enter the program

because you are required to sign a release so they can talk to your

doctors and then they tell them not to ever give you narcotics. ...

The only thing they are good for is ruining peoples lives!!!!!!!!!!!!!

(end of paste)

Another

(pasted)

... I think you may have made a wise decision not to go to...

inpatient pain management program. I thought that I wanted to go there

in 1995 and had the psychiatrist that was treating me for pain related

depression look into it for me. She has admitting privileges at...

and was a teaching faculty member at the university. She checked it out

and advised me not to go. The pain program patients were admitted to the

medical/psychiatric unit. The patients on that unit were a mixture of

mentally ill patients with real or imagined medical problems, eating

disorder patients, mentally ill patients that were wheelchair bound that

would have been on the regular psychiatric unit if they had been able to

dress, feed, bathe themselves, and get in and out of bed without

assistance. Sometimes there would be only one chronic pain patient on

the unit, often none at all. There were only 12 or 13 beds on the

entire unit . Sometimes there would be psychiatric patients with

absolutely no medical problems at all. Also, there were few private

rooms, and those usually went to the eating disorder patients. ... My

paychiatrist said that because I wasn't mentally ill, she was extremely

opposed to my being admitted there. She felt that there should be a

separate unit for pain patients....

(end of paste)

Here is part of the article written by the doctor

(pasted)

.... there appears to be a significant disparity between subjective

complaints and objective findings. The patient may present with various

exaggerated pain behaviors-such as limping, moaning, groaning, and

grimacing-while the physical examination and various tests may not reveal

any obvious pathology. These individuals remain symptomatic longer, stay off

work for prolonged periods of time (if they go back at all), and they tend

to utilize a disproportionate share of healthcare resources. They are often

labeled symptom magnifiers, elaborators, or exaggerators. We hear terms like

hysteria, functional overlay, somatization, and chronic pain syndrome....

Many of these individuals are subjected to repeated and varied medical

interventions, sometimes leading to untoward side effects and iatrogenic

(physician-created) complications. ... Sometimes physicians continue to

search for the " Holy Grail " to identify the pain generator. After all, if it

can be found, it can be fixed, can't it? Perhaps there is another

explanation... Well trained and experienced Pain Medicine physicians know

that the extent of a patient's subjective complaints often have more to do

with developmental, psychological, social, and cultural factors than with

physical pathology. In fact, the seasoned pain specialist recognizes that

there is risk of iatrogenic complications when the focus is on pathology,

without the realization that other nonphysical factors may be playing a

significant role in the clinical presentation. Some patients who present

with musculoskeletal pain complaints have underlying nonorganic or

behavioral problems that may not be immediately apparent. These nonorganic

causes of pain may be a deliberate deception (consciously aware)-such as

malingering-in order to obtain secondary gain or factitious disorder in

which the patient seeks to occupy the sick role. The causes may also be due

to a process unknown to the patient (not consciously aware) such as with

somatoform disorders. ... Risk factors for malingering include: (a) ongoing

litigation, ( significant discrepancy between subjective disability and

objective findings, © lack of cooperation with the evaluation and with

treatment, and (d) the presence of antisocial personality disorder. The

latter is marked by a history of unlawful behavior, aggressive behavior,

deceitful behavior, consistent irresponsibility, and lack of remorse for

wrongdoing. ... In factitious disorder, patients who want to occupy the sick

role consciously fabricate symptoms to attract the attention of physicians.

The patient with a factitious presentation not uncommonly agrees to

unnecessary surgery and interventions, which the malingerer will not. The

factitious patient is motivated by psychological needs, not external gain as

in the case of the malingering patient. These unmet needs may include a need

for attention, a desire to gain nurturance, or other intrapsychic issues.

The most severe and persistent form of factitious disorder is called

Munchausen syndrome ... In Munchausen syndrome, the individual intentionally

produces clinically convincing physical and laboratory signs of disease in

order to obtain medical treatment. These individuals will inject themselves

to produce swelling or infection, ingest agents to distort their laboratory

findings, rub irritants on their skin to produce rashes, or wear splints or

braces unnecessarily. Over time, their medical records show extensive

workups for convincing signs and symptoms, which change as the originally

suspected disorder is on the verge of being ruled out. These individuals

need treatment for their underling psychiatric disorder, although affecting

behavior change for this group is often quite difficult. ... There are

several subtypes of Somatoform Disorders. Somatization Disorder, for

example, involves a variety of physiologic symptoms, such as pain, G.I.

disturbance, sexual symptoms, and pseudoneurological symptoms-such as

paralysis, weakness, blindness, etc. There must be symptoms in each of these

areas to meet the criteria for diagnosis and the symptoms cannot be fully

explained by the medical work-up. Somatization Disorder is different from a

patient who uses somatization as a " defense mechanism. " In the latter, the

term is used more broadly to characterize patients who tend to develop

physical symptoms to manifest emotional distress. That is, all patients with

a Somatoform Disorder of some type employ somatization as a defense. ...

Another very common subtype of Somatoform problems is called Pain Disorder.

For this problem, the criteria are relatively loose. Pain must be the

predominant focus. There often is some form of physical etiology, but

psychological factors must play a role in the onset, severity, exacerbation,

or maintenance of the pain. A Somatoform diagnosis does not mean there is

no physical pathology or illness but that these behavioral symptoms can

coexist with, mask, and facilitate real illness. ... Factors that have been

found to contribute to somatization can be recognized and described by:

* Abuse or emotional deprivation in childhood

* Adult acute personal turmoil often involving abandonment and/or

increased responsibilities

* Societal roles

* Learned behavior

* Secondary gain

* Cultural factors

* Seeking redress for a perceived wrong

* Personality factors (particularly histrionic, narcissistic, and

borderline personality traits)

.... Some individuals do not understand the cause and meaning of their pain.

They may interpret the pain signal as implying some sinister pathology or

believe that nothing can be done to bring relief. Imagine the relatively

uneducated patient with a back sprain who is discovered to have a

spondylolysis on x-ray. This finding of a lumbar pars interarticularis

" fracture " may have been present since childhood and may be of no clinical

significance, yet the patient may report thereafter the presence of a

" fractured " spine and the inability to do anything out of fear. ... grouped

eight signs into five types. These five types-or categories of signs-are

tenderness, simulation, distraction, regional disturbances, and

overreaction. The presence of three or more of these signs is considered a

positive finding and is associated with other clinical measures of illness

behavior and psychological distress, suggesting the patient does not have a

straightforward medical problem.

* Tenderness: Superficial and non-anatomic skin discomfort on

palpation. Tenderness related to physical disease is usually localized.

Physical back pain does not make the skin tender to light touch.

Simulation: Axial loading or simulated rotation with report of low back

pain. Pressure on the top of the head (axial loading) of a standing patient

should not cause low back pain. When the shoulders and pelvis are rotated in

unison (simulated rotation), the structures in the back are not stressed. If

the patient reports back pain with this maneuver, the test is considered

positive for a nonorganic source of the patient's complaints.

* Distraction: In the standard straight-leg raise test, the patient

is recumbent and aware of the test being performed. In contrast, a

distracted straight-leg raise test is performed anytime the hip is flexed

with the knee straight. The distracted straight-leg raise test can be done

by examining the foot with the patient seated with one knee extended.

Another example of a distraction test would be when the patient uses the

injured limb when distracted.

* Regional Disturbances: Sensory change or weakness. Any widespread

or global numbness that involves an entire extremity (stocking, glove) or

side of the body and does not follow expected neurologic patterns is

suspect. Regional, sudden, or uneven weakness (cogwheeling, giving way,

breakaway) is a nonorganic, behavioral sign.

* Overreaction: The patient may be hypersensitive to light touch at

one point during examination but later give no response to touching of the

same area. This is a positive sign of overreaction, as evidenced by a

disproportionate grimace, tremor, exaggerated verbalizations, sweating, or

collapse. Other behavioral signs include inappropriate sighing, guarding,

bracing, and rubbing; insistence on standing or changing position; and

questionable use of walking aids or equipment.

.... It is also important to assess the patient's perception of the cause,

meaning, and impact of the pain. If the patient believes that the cause is

tissue damage, which means that activity will result in the progression of

an illness, it will be difficult to get the individual to engage in a

functionally-oriented physical rehabilitation program. Treatment must be

preceded by a cognitive shift, such that the patient no longer sees the

illness as progressive and sinister. If movement, despite pain, is perceived

as " safe, " then rehabilitation can ensue. ... Many patients do not believe

they have a psychological problem and may feel that their physician is not

taking them seriously. Preparing patients for psychological referral is an

important and artful step. Adopting an educational approach is preferred as

it is nonaccusatory and integrative. Especially in the absence of

significant physical findings, the physician should educate the patient

about the mind-body connection and explain the role that negative emotions

play in symptom production, symptom perception, and illness behavior. It is

important to legitimize the patient's symptoms. In an empathic manner, the

physician should make a referral to a psychologist and/or psychiatrist,

explaining that by addressing their emotional state they will feel better

psychologically, and this will also help them heal and learn

symptom-management techniques. In addition, psychotropic medications are

particularly helpful when the physical complaints are a manifestation of

underlying depression or anxiety, and research has shown that antidepressant

medication can have an analgesic effect as well. ... Psychological treatment

approaches used to treat somatization include cognitive-behavioral

treatment, relaxation training, and psychotherapy (both group and family).

Patients with somatoform tendencies often feel a strong need to have their

pain validated. They have experienced test after test, often without

positive finding of organic disease, despite knowing that " something is

definitely wrong. " A useful technique is to inform them that they do in fact

have a real medical problem - one that is related to their autonomic nervous

system and that it is not " all in their head. " The physician can take the

role of educator, explaining that the symptoms are due to a disorder of the

autonomic nervous system, which can be present despite " normal " diagnostic

tests. After gaining confidence with the patient, an effort is made to

identify psychosocial stressors that worsen the patient's pain complaint and

draw a link between these stressors and the disordered autonomic nervous

system. ... Patients occasionally present with complaints that far exceed

the objective pathology. For some, physical symptoms serve as a focus for

getting attention and remuneration, as well as a means to avoid personal and

work responsibilities. For others, physical symptoms can be an expression of

psychosocial or emotional conflict. Healthcare practitioners treating these

individuals may focus on the complaints, assume a correlation between

findings on tests and procedures with the level of symptoms, and go forward

with a variety of treatments while psychological, social, and cultural

factors may significantly (or in some cases solely) contribute to the

patient's presentation. This type of approach, unfortunately, reinforces

dysfunction and disability, and may result in iatrogenic complications. ...

On 4/11/04 7:07 AM, " ceda " ceda > wrote:

>

> Subject: Re: Re: " Soup line " rant

>

> You wrote -

>

> " I get the impression that since chronic pain has refused to help that now

> these others will follow suit; the chronic pain group was their solution for

> my problems as

> well.

> I don¹t know what to do. To wait too long could be disasterous. "

>

> I suggest you look for another pain management facility. There are ones

> that are privately run by docs, usually anethesiologists (sp?). I agree that

> the other docs could shrug you off using this as an excuse. Mostly because

> most of them probably really can not help you and they are hoping that if you

> can get your pain under control most of your problems will lessen making only

> " main " ones stand out. Unfortunately most of the time docs either won't (due

> to high potential of recurrance or failure) or can't really fix much with us.

> Of course you never know until you ask though :-)

>

> I looked in one of our phone books and couldn't find an easy way to look up

> pain management facilities. You may want to contact Medicare (or maybe they

> have a website that does it) to get a listing of pain management facilities in

> your area that take Medicare.

>

> Continue to pursue this. It can really make a difference in your life to

> have some pain control. It is worth fighting for!

>

> Hugs,

> B.

> HEDS, New Jersey, USA

[Guest guest]

;

Thank you for the reply. This pain group is run by anethesiologists.

I have been looking on the web for info about the clinic I went to. I did a

search in google groups and found many many stories like mine. I also found

an article my doctor had written.

There have been evidently other people in similar situations as mine. Here

are some typical posts about them

(pasted) ...

Anyone considering using this program needs to be aware of how they

work. ... when I could no longer function without pain meds I was

labeled a " drug seeker " My chart was flagged and the ER was warned and

told " under no circumstanses was this patient to be given any type of

narcotic " My doctors were all contacted and told not give me any

drugs. This left me desperate. I had to leave all my doctors and start

from scratch ... I could not even transfer records ... because I would

be tagged a troublemaker from the start.

(end of paste)

Here is another

(pasted)

... i had my brain surgery there...wonderful experience. So when i got

into their pain clinic i thought they'd send me into a new path with my

pain. Dead bullfrog. Nothing. ... so the psych part of the clinic (i

had four one-hour exams with different dr's) said the pain is due to

depression. Hell, i was in a good mood that day... Other pain clinics

have been as disappointing, but i had higher expectations due to my

previous encounters...

(end of paste)

Another

(pasted)

... University Hospital's pain clinic. I once worked as a unit

secretary and would sometimes be assigned to the floor where they had

the inpatient pain patients and psychiatric patients mixed together.

Some of the psych patients had some very strange medical /psych

problems. The poor pain patients were exposed to all of this and it

seemed like the chronic pain patients were all assumed to have mainly

psychiatric causes for their chronic pain, and that psychiatry was the

best treatment. All patients had to have a psychiatrist see them during

their entire stay, or they would not be admitted to the unit...

(end of paste)

Another

(pasted)...

I did go to the ... Pain clinic (both out-patient and in-patient)...

Their thing was basically to try and prove that it is " All in your head "

because this is what they did: Put me on a Pain Cocktail; they wrote up

the script and sealed it in an envelope, so you wouldn't know the dose

of Methadone and Baclofen that was in the mix...I could have cared less

if it would have worked--But it didn't.. And they varied the amounts

every refill... "

(end of paste)

Another

(pasted)

... This is exactly the same program that... hospital has. If you don't

fit into their program you are labeled a drug seeker. They even destroy

any relationship you have with doctors when you enter the program

because you are required to sign a release so they can talk to your

doctors and then they tell them not to ever give you narcotics. ...

The only thing they are good for is ruining peoples lives!!!!!!!!!!!!!

(end of paste)

Another

(pasted)

... I think you may have made a wise decision not to go to...

inpatient pain management program. I thought that I wanted to go there

in 1995 and had the psychiatrist that was treating me for pain related

depression look into it for me. She has admitting privileges at...

and was a teaching faculty member at the university. She checked it out

and advised me not to go. The pain program patients were admitted to the

medical/psychiatric unit. The patients on that unit were a mixture of

mentally ill patients with real or imagined medical problems, eating

disorder patients, mentally ill patients that were wheelchair bound that

would have been on the regular psychiatric unit if they had been able to

dress, feed, bathe themselves, and get in and out of bed without

assistance. Sometimes there would be only one chronic pain patient on

the unit, often none at all. There were only 12 or 13 beds on the

entire unit . Sometimes there would be psychiatric patients with

absolutely no medical problems at all. Also, there were few private

rooms, and those usually went to the eating disorder patients. ... My

paychiatrist said that because I wasn't mentally ill, she was extremely

opposed to my being admitted there. She felt that there should be a

separate unit for pain patients....

(end of paste)

Here is part of the article written by the doctor

(pasted)

.... there appears to be a significant disparity between subjective

complaints and objective findings. The patient may present with various

exaggerated pain behaviors-such as limping, moaning, groaning, and

grimacing-while the physical examination and various tests may not reveal

any obvious pathology. These individuals remain symptomatic longer, stay off

work for prolonged periods of time (if they go back at all), and they tend

to utilize a disproportionate share of healthcare resources. They are often

labeled symptom magnifiers, elaborators, or exaggerators. We hear terms like

hysteria, functional overlay, somatization, and chronic pain syndrome....

Many of these individuals are subjected to repeated and varied medical

interventions, sometimes leading to untoward side effects and iatrogenic

(physician-created) complications. ... Sometimes physicians continue to

search for the " Holy Grail " to identify the pain generator. After all, if it

can be found, it can be fixed, can't it? Perhaps there is another

explanation... Well trained and experienced Pain Medicine physicians know

that the extent of a patient's subjective complaints often have more to do

with developmental, psychological, social, and cultural factors than with

physical pathology. In fact, the seasoned pain specialist recognizes that

there is risk of iatrogenic complications when the focus is on pathology,

without the realization that other nonphysical factors may be playing a

significant role in the clinical presentation. Some patients who present

with musculoskeletal pain complaints have underlying nonorganic or

behavioral problems that may not be immediately apparent. These nonorganic

causes of pain may be a deliberate deception (consciously aware)-such as

malingering-in order to obtain secondary gain or factitious disorder in

which the patient seeks to occupy the sick role. The causes may also be due

to a process unknown to the patient (not consciously aware) such as with

somatoform disorders. ... Risk factors for malingering include: (a) ongoing

litigation, ( significant discrepancy between subjective disability and

objective findings, © lack of cooperation with the evaluation and with

treatment, and (d) the presence of antisocial personality disorder. The

latter is marked by a history of unlawful behavior, aggressive behavior,

deceitful behavior, consistent irresponsibility, and lack of remorse for

wrongdoing. ... In factitious disorder, patients who want to occupy the sick

role consciously fabricate symptoms to attract the attention of physicians.

The patient with a factitious presentation not uncommonly agrees to

unnecessary surgery and interventions, which the malingerer will not. The

factitious patient is motivated by psychological needs, not external gain as

in the case of the malingering patient. These unmet needs may include a need

for attention, a desire to gain nurturance, or other intrapsychic issues.

The most severe and persistent form of factitious disorder is called

Munchausen syndrome ... In Munchausen syndrome, the individual intentionally

produces clinically convincing physical and laboratory signs of disease in

order to obtain medical treatment. These individuals will inject themselves

to produce swelling or infection, ingest agents to distort their laboratory

findings, rub irritants on their skin to produce rashes, or wear splints or

braces unnecessarily. Over time, their medical records show extensive

workups for convincing signs and symptoms, which change as the originally

suspected disorder is on the verge of being ruled out. These individuals

need treatment for their underling psychiatric disorder, although affecting

behavior change for this group is often quite difficult. ... There are

several subtypes of Somatoform Disorders. Somatization Disorder, for

example, involves a variety of physiologic symptoms, such as pain, G.I.

disturbance, sexual symptoms, and pseudoneurological symptoms-such as

paralysis, weakness, blindness, etc. There must be symptoms in each of these

areas to meet the criteria for diagnosis and the symptoms cannot be fully

explained by the medical work-up. Somatization Disorder is different from a

patient who uses somatization as a " defense mechanism. " In the latter, the

term is used more broadly to characterize patients who tend to develop

physical symptoms to manifest emotional distress. That is, all patients with

a Somatoform Disorder of some type employ somatization as a defense. ...

Another very common subtype of Somatoform problems is called Pain Disorder.

For this problem, the criteria are relatively loose. Pain must be the

predominant focus. There often is some form of physical etiology, but

psychological factors must play a role in the onset, severity, exacerbation,

or maintenance of the pain. A Somatoform diagnosis does not mean there is

no physical pathology or illness but that these behavioral symptoms can

coexist with, mask, and facilitate real illness. ... Factors that have been

found to contribute to somatization can be recognized and described by:

* Abuse or emotional deprivation in childhood

* Adult acute personal turmoil often involving abandonment and/or

increased responsibilities

* Societal roles

* Learned behavior

* Secondary gain

* Cultural factors

* Seeking redress for a perceived wrong

* Personality factors (particularly histrionic, narcissistic, and

borderline personality traits)

.... Some individuals do not understand the cause and meaning of their pain.

They may interpret the pain signal as implying some sinister pathology or

believe that nothing can be done to bring relief. Imagine the relatively

uneducated patient with a back sprain who is discovered to have a

spondylolysis on x-ray. This finding of a lumbar pars interarticularis

" fracture " may have been present since childhood and may be of no clinical

significance, yet the patient may report thereafter the presence of a

" fractured " spine and the inability to do anything out of fear. ... grouped

eight signs into five types. These five types-or categories of signs-are

tenderness, simulation, distraction, regional disturbances, and

overreaction. The presence of three or more of these signs is considered a

positive finding and is associated with other clinical measures of illness

behavior and psychological distress, suggesting the patient does not have a

straightforward medical problem.

* Tenderness: Superficial and non-anatomic skin discomfort on

palpation. Tenderness related to physical disease is usually localized.

Physical back pain does not make the skin tender to light touch.

Simulation: Axial loading or simulated rotation with report of low back

pain. Pressure on the top of the head (axial loading) of a standing patient

should not cause low back pain. When the shoulders and pelvis are rotated in

unison (simulated rotation), the structures in the back are not stressed. If

the patient reports back pain with this maneuver, the test is considered

positive for a nonorganic source of the patient's complaints.

* Distraction: In the standard straight-leg raise test, the patient

is recumbent and aware of the test being performed. In contrast, a

distracted straight-leg raise test is performed anytime the hip is flexed

with the knee straight. The distracted straight-leg raise test can be done

by examining the foot with the patient seated with one knee extended.

Another example of a distraction test would be when the patient uses the

injured limb when distracted.

* Regional Disturbances: Sensory change or weakness. Any widespread

or global numbness that involves an entire extremity (stocking, glove) or

side of the body and does not follow expected neurologic patterns is

suspect. Regional, sudden, or uneven weakness (cogwheeling, giving way,

breakaway) is a nonorganic, behavioral sign.

* Overreaction: The patient may be hypersensitive to light touch at

one point during examination but later give no response to touching of the

same area. This is a positive sign of overreaction, as evidenced by a

disproportionate grimace, tremor, exaggerated verbalizations, sweating, or

collapse. Other behavioral signs include inappropriate sighing, guarding,

bracing, and rubbing; insistence on standing or changing position; and

questionable use of walking aids or equipment.

.... It is also important to assess the patient's perception of the cause,

meaning, and impact of the pain. If the patient believes that the cause is

tissue damage, which means that activity will result in the progression of

an illness, it will be difficult to get the individual to engage in a

functionally-oriented physical rehabilitation program. Treatment must be

preceded by a cognitive shift, such that the patient no longer sees the

illness as progressive and sinister. If movement, despite pain, is perceived

as " safe, " then rehabilitation can ensue. ... Many patients do not believe

they have a psychological problem and may feel that their physician is not

taking them seriously. Preparing patients for psychological referral is an

important and artful step. Adopting an educational approach is preferred as

it is nonaccusatory and integrative. Especially in the absence of

significant physical findings, the physician should educate the patient

about the mind-body connection and explain the role that negative emotions

play in symptom production, symptom perception, and illness behavior. It is

important to legitimize the patient's symptoms. In an empathic manner, the

physician should make a referral to a psychologist and/or psychiatrist,

explaining that by addressing their emotional state they will feel better

psychologically, and this will also help them heal and learn

symptom-management techniques. In addition, psychotropic medications are

particularly helpful when the physical complaints are a manifestation of

underlying depression or anxiety, and research has shown that antidepressant

medication can have an analgesic effect as well. ... Psychological treatment

approaches used to treat somatization include cognitive-behavioral

treatment, relaxation training, and psychotherapy (both group and family).

Patients with somatoform tendencies often feel a strong need to have their

pain validated. They have experienced test after test, often without

positive finding of organic disease, despite knowing that " something is

definitely wrong. " A useful technique is to inform them that they do in fact

have a real medical problem - one that is related to their autonomic nervous

system and that it is not " all in their head. " The physician can take the

role of educator, explaining that the symptoms are due to a disorder of the

autonomic nervous system, which can be present despite " normal " diagnostic

tests. After gaining confidence with the patient, an effort is made to

identify psychosocial stressors that worsen the patient's pain complaint and

draw a link between these stressors and the disordered autonomic nervous

system. ... Patients occasionally present with complaints that far exceed

the objective pathology. For some, physical symptoms serve as a focus for

getting attention and remuneration, as well as a means to avoid personal and

work responsibilities. For others, physical symptoms can be an expression of

psychosocial or emotional conflict. Healthcare practitioners treating these

individuals may focus on the complaints, assume a correlation between

findings on tests and procedures with the level of symptoms, and go forward

with a variety of treatments while psychological, social, and cultural

factors may significantly (or in some cases solely) contribute to the

patient's presentation. This type of approach, unfortunately, reinforces

dysfunction and disability, and may result in iatrogenic complications. ...

On 4/11/04 7:07 AM, " ceda " ceda > wrote:

>

> Subject: Re: Re: " Soup line " rant

>

> You wrote -

>

> " I get the impression that since chronic pain has refused to help that now

> these others will follow suit; the chronic pain group was their solution for

> my problems as

> well.

> I don¹t know what to do. To wait too long could be disasterous. "

>

> I suggest you look for another pain management facility. There are ones

> that are privately run by docs, usually anethesiologists (sp?). I agree that

> the other docs could shrug you off using this as an excuse. Mostly because

> most of them probably really can not help you and they are hoping that if you

> can get your pain under control most of your problems will lessen making only

> " main " ones stand out. Unfortunately most of the time docs either won't (due

> to high potential of recurrance or failure) or can't really fix much with us.

> Of course you never know until you ask though :-)

>

> I looked in one of our phone books and couldn't find an easy way to look up

> pain management facilities. You may want to contact Medicare (or maybe they

> have a website that does it) to get a listing of pain management facilities in

> your area that take Medicare.

>

> Continue to pursue this. It can really make a difference in your life to

> have some pain control. It is worth fighting for!

>

> Hugs,

> B.

> HEDS, New Jersey, USA