Intro

[Guest guest]

Hi Candy

Have you seen a neurologist? sounds a little like MS. You also have some symptoms of fibromalagia. See a Rhuematologist. Doctors can help, you just have to find the right one

Joy in Dallas

Reactive Arthritis and all associated syndromes and then some

A house without a cat is like a hug without a kiss.

[Guest guest]

Hi : I am new to this list mail group but I am no stranger to pain,

in many forms.

I started very early, around your age with pains that moved around my body.

For many years I was led to believe that my pains were not real, or as you

say " in my head " my first comment to that statement is whoever is saying

this to you is toxic! First of all the body may become overly sensitive to

pain tolerance but pain is usually a warning signal that something is going

on with your body. If possible find a Physician who is familar with

Firbromyalgia. My own early warnings were pain showing up in many places in

my body ( I found out that I was classic in my syndrome, I had leg and body

aches as a young girl and woman but at the time they would come and go..I was

told this is one of the symptoms you can try to recall..) My Mom was a Woman

who did not believe in complaining and was one of those just ignore it and

work harder and I would be fine people .There are many psychological

components that allowed me to go on for a long time before I decided to

explore the symptoms. I finally found a Physician who knew alot about the

disorder and he did a simple test by examining the many areas that are

symptomatic of fibromyalgia. I finally felt like i was heard and started

taking supplements to help stopping the disease symptoms from spreading..(

You can note these by researching the web for information on this problem.. I

am not a Doctor so I won't dare to prescribe my own meds.) I found that there

were many things going on that caused pain, weakness and chronic pain and

weakness, etc. I had a disc in my neck that had to be fused as it was

pinching on nerves in my neck, arms and shoulders. I then had carpal tunnel

surgery as my hands were becoming weak and by then I started to develop early

onset osteoarthritis in my hands and then had to have a joint replaced in my

right thumb( doing repetitive work and 6 years of college ( returning at 40

years to get a degree) Then my right shoulder had to be operated on as I had

calcium deposits in the joint and the deposits had torn the tissue around it

causing a tennis shoulder ( or a base ball injury--never played those

sports.The last three years I have been working on my back as I had

degenertive discogenic disease and had to have fusions. Mind you in this

period of my life 10-15 years I had developed a tolerance to pain

medications. After the last surgery ( they were successful by the way but it

took me 10 years to find a doctor that was expert enough in his field a

pioneer in back surgeries ( UCLA Wesrwood, CA) Dr. Filler neurosurgeon.

I have also had a problem with my right leg and hip and side that turns out

to be a periformis syndrome( the muscle that attaches to the Sciatic nerve

bundle ) there is not much that can be done to alleviate the problem they

did do a release but that did not solve the problem. On Monday I am having a

Spinal Cord Stimulator put in that will help me to get off of the pain meds

that make my life dysfunctional especially physically and mentally. I had the

trial period and found it helped about 50%.. my next plan is to go to a

physiatrist and then get into physical therapy to get back some of the

deteriation of my body muscles etc. I used to be a runner and always stayed

fit but this whole series of lifes little hurdles has done it's damage. I

need to do this for many reasons.

In all this stuff I have gone to therapy for the psychologial results of

chronic pain and this was the best thing I could have done as I found a

therapist who has worked with me for 3 years and has helped me to work

through many of my issues, I would have not been able to do what I have done

without her support and Cognitive Therapy. Be your own Doctor, listen to

your body and don't let anyone tell you ever!! that it is all in your head.

Search until you find help that understands your problems, that knows the

field you have those problems with and insist on getting that help!! C.

wseone56@... Torrance, CA. USA wseone56@...

[Guest guest]

Welcome to the list, Candy!

I think most of us have at least once (if not many times!!) been treated

the way you describe. It's both degrading and it makes the pain level

rise, as it's an extra stress....and they call themselves *doctors - to

heal and help*(!!!!!!)

Your arm symptoms sound similar to my Mother's - she has Carple Tunnel

Syndrome. The neck and back pain could be from tension because of your

arm, but it's hard to say. As for the bad memory, that unfortunately

often follows high pain levels and medication - I'm only 31, and have to

write things down or else I forget. I hate it, but I've learned to try

and deal with it as I can't make it better at this point.

Have you been to a Physical Therapist? Maybe some of your muscles are

very tense and could be causing the other pain areas - only a

suggestion.

Do you have any pain clinic or other type of pain facility that you can

turn to? Your arm problems can't be " in your head " - that's

just not reasonable! But it is difficult to get through to the right

medical people - it's a JUNGLE, and with pain we all just are left with

so little energy that it's hard to take the initiative that's

needed.

Anyways, I hope you will find understanding here among us!

If nothing else, this group is wonderful as " listeners " when

the frustration is just too much. I've vented here several times!

H

Hello Group,

I am 45 and have had

CFS for the past 3 + yrs.I have crashing fatigue and bouts of total

muscle weakness. I have been to and endcronologist and all levels were in

the normal range. One dr. told me I was iron deficint anemic and I had a

colonoscopy and endoscopy. I was on supplements and now all is

normal.

For the past several

months I have pain in my right forearm and cannot lift anything. I have

trouble holding things and have little stregnth in that hand also. I have

neck pain and dull lower back pain. I have poor memory and am sensitive

to loud sounds. I have always been a high energy person and able to multi

task. I am not the same person I used to be and it is so frustrating.

I went to my ob/gyn Wed. and left

in tears.She suggested when this began it was depression. I followed her

advice and saw a psychiatrist. I was taking several different meds.

to which I found no relief. I continued this for almost 1 1/2 yrs.Now she

is still telling me it sounds like depression and I just want to SCREAM!

I joined this board hoping to find some insight to how people cope and

what path to follow. It seems like the Drs. can't give me direction so I

need to take matters in my own hands. Thank you for listening to my

rambling here.

Sincerely,

Candy

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[Guest guest]

Hi all,

I have a question, anyone? I am on vicodin during the day and Darvocett for the nighttime when pain isnt quite so bad. I had tried mscontin and really didnt like the side effects, especially asthma. What is this oxycontin i hear you all talking about?

Also, does anyone else have experience taking vicodin and what are long term effects of using it? It really seems to help me. Altho my dr only allows me 2 doses a day. What do some of you get in the way of dosing?

Should I be asking for enough to cover the whole day, or is there a legitimate reason for restricting it? Thanks for any advice? Diane D

[Guest guest]

Hi: As a person who started out with regular Vicodin about 8 years ago then

went on to extra-strength Vicodin and then Norco ( another form of

Vicodin--stronger but less Tylenol) then to the present Oxycontin, I can only

say that each person is different and each body metabolizes things (food,

alcohol, medications) at different rates this is an opinion of mine that has

proven to be true. I personally need medications every 3-4 hours and have

been working at backing off the meds to try to lessen the meds at this time.

I think that many Doctors are afraid that people will become " addicted " with

Vicodin as it is my understanding that the medication is easily addictive, in

my case it has been both physically and some mentally as I always worry that

I will have major pain if I don't keep the meds in my bloodstream then I will

have to take the stuff and sit or lay down until it takes effect. Oxycontin

is a strong acting form of the Vicodin without the Tylenol, the Tylenol can

be damaging to ones liver and this is in my opinion something to be careful

about. I cannot imagine that the dosage you speak of could do that much for

anyone but then again I am not a Doctor. The most important thing to me is

that I get adequate relief so that I am comfortable enough to be able to

function without being too medicated. Find a Doctor that specializes in Pain

Management if you can or if your Health Insurance allows. They are more

educated as to the type and frequency of medication as well as how to help

you be comfortable. Good luck to you. E-mail me if you want to talk

further. Sincerely, Alice wseone56@...

[Guest guest]

Hi Barton,

This is my first post in this group, but I wanted to say hello and

let you know you aren't alone in the problems you are facing. I know

other men (and women) who have the results of disc problems you do so

I know it is very hard. Still, the depression can aggravate all of

this, so I hope you will talk to your doctor about it and consider

some counseling to help with the problems of chronic pain. Don't

suffer with depression any more than you have to. If there is a med

that will help (many help with other symptoms too, especially sleep),

or a professional that can, please take advantage. There is no need

to go it alone.

I am still being diagnosed for my problems (symptoms like most of

yours), but my doctors feel my car accident in the mid 80's must be

the root cause. I have had constant and chronic pain in one form or

another from that point on. Many experts feel a trauma can cause a

number of diseases in addition to the skeletal ones an MRI can see.

That's why it is taking so long for me to get a dx. Not to mention

the long waits to get specialist appointments, schedule tests, etc.

But be assured I can relate to the pain you are experiencing - and

the lack of sleep, which I thank an anti-depressant (very weak dose)

for ending.

I had some questions, if you don't mind. Why are there now problems

going into the thorasic spine? And I wondered, with all the new disc

problems, why new surgery isn't offered to you? More and more I am

hearing good things, unlike a few years ago. Have the doctors

explored fixing some of what went wrong (I really assume they have,

but just wondered)?

I hope you will find relief for your pain soon.

> Greetings All,

> I have been on the list for a couple of days and haven't had a

time

> to introduce myself. My name is Bart. I am 43 and I have been

living

> with pain for about 6 years now. I joined the list for a couple of

> reasons. First and foremost, to be able to communicate with people

who

> understand. I don't have anyone I can talk to. Second, I read

some of

> the posts in the archive and this list seems to be really good,

really

> informed and together. If anyone is interested there is a brief

> description of my affliction below.

> Anyway, I have some observations and some questions. Has anyone

> tried any of the new laser procedures? If so, what was your

result? I

> noticed several people considering surgery. I would recommend

shopping

> for a surgeon like you shop for anything else. I made the mistake

> assuming the surgeon I went to was good just because he was 'board

> certified'. That does not necessarily make a good surgeon.

Government

> agencies (DEA for example) don't make the rules they enforce. When

they

> are acting like nazi's and jack booted thugs it is because they are

> carrying out the rules that congress has given them. Congress

enacts

> legislation and makes rules that may make sense on paper but when

they

> go out to the agencies who carry them out all logic and sense is

lost.

> I know this intimately because both my wife and I work for

government

> agencies. Write your congressmen. They make the rules, they can

change

> the rules. If we need, and I believe we do, better policies with

> respect to pain management, we need to appeal to the one entity

that can

> affect that policy. Okay, I'll get off my soapbox : ).

> My pain started with a ruptured disk at C5. The pain was in my

neck

> and down my right arm. The surgery was successful. No pain, all

> symptoms gone. Two months after the surgery, back at work full

time, I

> was rear ended at a stop light on the way home. Although it was a

low

> speed impact it was enough. I felt it immediately, return of the

pain.

> The accident had caused the disk at C6 to rupture. I had surgery

the

> next month and have not had a pain free day since. The pain doc was

> doing a study of my neck and during a diskogram C4 ruptured. I

stopped

> seeing that doctor. I have tried everything. Tens units do not

work.

> Neurontin did not work. All the conventional meds do not work.

There

> are several disks in the lumbar spine that are bulged and at least

one

> ruptured. Walking now is an exercise in excruciating pain.

Associated

> with the problems in the lumbar spine I have bladder control

problems

> and sex is non existent. In the last year I have started having

> problems with several spots in the thoracic spine. It hurts

constantly

> and I have problems breathing. The pain I feel associated with the

disk

> problems I can describe as sometimes stabbing, sometimes burning,

> sometimes tearing. Most times thought it feels as if the bones in

my

> arms, hands, legs and feet are being crushed in a vice. It has

been 5

> years since I have slept all night. The doctor I am seeing now is

not

> afraid of the government agencies. He documents himself well and

can

> support what he prescribes. I have been on oxycontin for about two

> years now. I have a firm believer in it. It does not make me pain

> free, I don't think anything can. It does, however, reduce the

pain to

> a level that I can be tolerable around friends and family.

Depression

> is the latest demon I have been battling. That is a war I am

afraid I

> am losing. When I was younger and the father of two young

children, 7

> and 4, I lost my first wife to cancer. I thought the depression I

felt

> then was pretty bad. This is worse. Anyway, this is the readers

digest

> version of my situation. Thanks for tolerating.

>

> Barton

[Guest guest]

Dear Bart and Group: It sounds like you have what I term the " domino effect "

it seems I hear alot on this list about people starting out with one back or

neck problem and as time goes on it seems that other areas become involved.

I can only state that logically when one area becomes unstable it causes

weakness in the link and can develop more problems. I started out with a

C-4-5 fusion and then a c-6-7, then L-5s' and L-4-5 I too feel it started

with a car accident 15 years ago one in which I was rear ended and sent

through an intersection with the other driver not braking at 50mph. I also

have Spinal Stenosis and Degenerative Discogenic disease. Along with the back

stuff I developed carpal tunnel, torn rotator cuff, Achilles tendon repair,ad

ad infinitum. It is I feel natural that just the mere processes necessary to

get diagnosed, tested, surgery, medicated, followup appointments and then

some new problem along the way is certainly enough to bring on depression. I

have been with a Therapist for 4-5 years, I have a chemical imbalance so I

need to go anyway but she herself suffers with back issues and she has helped

me recognize when the pain is increased by my thoughts my reaction to life,

to my fears and frustrations,stress and tension.

I agree that this group appear to be among those who are into being their own

best medical advocates and it shows.

The best thing you can do is to get out in the fresh air if possible, even if

you sit, listen to soothing music, watch a funny movie and then there is the

aspect of seeing a person who knows a lot about pain issues and the side

effects that come with it and find a good friend who understands you pain and

problems and loves you unconditionally, you have to ask and to reach

out....women tend to be more vocal as it is allowed in our silly society, men

are supposed to be stoic..not in my book. we are all the same we need help

and support and also to be able to ask for what we need. Best of Luck,

Alice wseone56

[Guest guest]

Hi,

I wish someone would give me an answer. I have tried for a few days now to understand medications better so that when I go see my dr next tuesday, I will be more prepared to talk about what I need to.

A lot of you have mentioned taking Oxycontin...........will someone please tell me what kind of drug that is. I have taken mscontin and it didnt set well with me. I want to know if this is the same class of morphine or different like the vicodin I use. And why do you all seem to say it works better? Please, anyone? Thanks diane d

[Guest guest]

Hi: Personally I am concerned about the effect of drugs on my liver. This

medication is pure Hydrocodone, sans the tylenol. The tylenol is the culprit.

I cannot tell you why it works better it just does most likely it is more

potent in its pure form. Alice

[Guest guest]

Diane,

Oxycontin is in the same class as mscontin.

The difference is that oxy is time release over a 12 hour period.

It builds more gradually in the system and then stays at peak efficiency

longer. Those that are not time release peak rapidly and then drop

off. They are more for immediate relief. I would recommend

anyone who is having trouble 'tolerating' a particular drug, take a benadryl

with it. The problem tolerating is most likely an allergic reaction

and the benadryl helps combat that reaction and helps tolerate the meds

better. When my first wife had cancer many of her meds had to be

taken with benadryl because she couldn't tolerate the very drugs that were

supposed to keep her alive. Good luck. : )

b

Angeldrmer7@... wrote:

Hi,

I wish someone

would give me an answer. I have tried for a few days now

to understand medications

better so that when I go see my dr next tuesday, I

will be more prepared to

talk about what I need to.

A lot of you have

mentioned taking Oxycontin...........will someone

please tell me what kind

of drug that is. I have taken mscontin and it didnt

set well with me.

I want to know if this is the same class of morphine or

different like the vicodin

I use. And why do you all seem to say it works

better? Please,

anyone? Thanks diane d

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[Guest guest]

Hi Diane,

Vicodin, Mscontin and Oxycontin are all narcotic pain relievers, but

vicodin has Tylenol added to it. There are other differences as well, but

all fall basically into the same category. I had been on mscontin for a

few years and have been on oxycontin for close to 2 years now. My doctor

switched me because I developed pancreatitis and he felt the mscontin

could have been a contributing factor. The main factor was Vioxx, though.

I haven't noticed any big difference between the two; both work well for

me, although the oxycontin seems to be a little bit easier on my

stomach.

Hower

At 03:57 PM 2/22/01 -0500, you wrote:

Hi,

I wish someone would give me an answer. I have tried

for a few days now

to understand medications better so that when I go see my dr next

tuesday, I

will be more prepared to talk about what I need to.

A lot of you have mentioned taking Oxycontin...........will

someone

please tell me what kind of drug that is. I have taken mscontin and

it didnt

set well with me. I want to know if this is the same class of

morphine or

different like the vicodin I use. And why do you all seem to say it

works

better? Please, anyone? Thanks diane

d

[Guest guest]

DAwn,

i believe what your doc is looking for is osteoarthritis (correct me if

im wrong on the type) bc it shows in the neck and the lumbar (lower back)

spine my problems right now are in the lumbar spine but i have had alot of

problems with my neck and they suspect a form of arthritis i dont know if

this helped any but i tried

LiL Missy

>From: dawnjohnshughes@...

>Reply-To: chronic_pain

>To: chronic_pain

>Subject: Intro

>Date: Thu, 29 Nov 2001 23:40:01 -0800

>

>Hello everyone,

>

>I have FMS/CFIDS and take major pain meds for pain. I still am in so

>much pain I can barely stand it. I just had one neck Xray that showed

>degeneration (bones bow out like bell jeans ...that is how the doc

>described it) so I am going to try and get whole body x rays to see what

>this is...as some form of arthritis? He is my pain doc and I have to go

>to a free doc to afford more x rays. Unfortunately my pain doc is just

>that a pain doc, not a diagnostician for other things. My pain doc told

>me to try and get lumbar x rays... whatever that means and he didn't go

>into the arthritis thing. I had to pull teeth to get him to say it was a

>form of arthritis.

>

>Anyway, does anyone know what else I may have to cause this much pain? I

>wake up at night in pain that takes my breath away even though I have

>good pain meds. I am practically house bound. I just know I must have

>some awful arthritis also or something else besides FMS/CFIDS to be in

>this much pain. If anyone has some ideas please tell me so I may mention

>it when I go to the new MD doctor next week. Up until this point my

>physicians have been awful and I would like to research and suggest ideas

>to who ever I see.

>

>Thanks for anyone who can offer a suggestion or help. Please feel free to

>e-mail me privately or through the group.

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Dawn, Missy,

Sounds like one of the 2,000 arthritic diseases that are hard to

keep in your head at once for a med school test.

The variant I have has no rheumatoid factor but behaves

rheumatoid. That behavior includes flu-like attacks, searing pain attacks

in upper back and a whole repertoire. Could be that there are many

different things covered by the general term " arthritis " that few know much

about. Anyhow, the good part is that these kinds can come and go, leaving

you alone for years at a stretch; and don't just get worse in a linear

manner. The progression can slow down a lot (I think mine has).

Changed shape of vertebrae suggests a general category called

spondylitis, and if you don't have the rheumatoid factor, but still such

symptoms, you could be one of the 20% who don't test positive but do have

rheumatoid symptoms.

The recent class of drugs called II inhibitors are now quite

refined from their first appearance and could work well . Also, shape

changes suggest calcium deficiencies, and this can be approached through

diet/supplements.

Ken

At 08:47 AM 11/30/2001 -0500, missy burch wisely said:

>DAwn,

> i believe what your doc is looking for is osteoarthritis (correct me if

>im wrong on the type) bc it shows in the neck and the lumbar (lower back)

>spine my problems right now are in the lumbar spine but i have had alot of

>problems with my neck and they suspect a form of arthritis i dont know if

>this helped any but i tried

>

>LiL Missy

>

>

>

> >From: dawnjohnshughes@...

> >Reply-To: chronic_pain

> >To: chronic_pain

> >Subject: Intro

> >Date: Thu, 29 Nov 2001 23:40:01 -0800

> >

> >Hello everyone,

> >

> >I have FMS/CFIDS and take major pain meds for pain. I still am in so

> >much pain I can barely stand it. I just had one neck Xray that showed

> >degeneration (bones bow out like bell jeans ...that is how the doc

> >described it) so I am going to try and get whole body x rays to see what

> >this is...as some form of arthritis? He is my pain doc and I have to go

> >to a free doc to afford more x rays. Unfortunately my pain doc is just

> >that a pain doc, not a diagnostician for other things. My pain doc told

> >me to try and get lumbar x rays... whatever that means and he didn't go

> >into the arthritis thing. I had to pull teeth to get him to say it was a

> >form of arthritis.

> >

> >Anyway, does anyone know what else I may have to cause this much pain? I

> >wake up at night in pain that takes my breath away even though I have

> >good pain meds. I am practically house bound. I just know I must have

> >some awful arthritis also or something else besides FMS/CFIDS to be in

> >this much pain. If anyone has some ideas please tell me so I may mention

> >it when I go to the new MD doctor next week. Up until this point my

> >physicians have been awful and I would like to research and suggest ideas

> >to who ever I see.

> >

> >Thanks for anyone who can offer a suggestion or help. Please feel free to

> >e-mail me privately or through the group.

>

>

>_________________________________________________________________

>Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

>

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>

>

>

>

[Guest guest]

Hello Cassie. I'm Denisa and new here myself. I do not have FMS, so I cannot

relate to your specific questions about it. But I wanted to welcome you and say

hello.

Denisa

intro

Hi everyone,

I am 23 and have been diagnosed with FMS for about a year. I live in

Oklahoma. I found out about this group at a website I was reading

about on pain for fms. If you have fms you may like it also.

http://www.geocities.com/fmsmesyndrome/index.html

I am working, but barely. It seems like I get more and more tired

every day. I am looking to know what others do to help with pain

and fatigue. I also worry about not being able to work sometimes at

work I am not even able to work!

I would like to know what people are taking to help with pain and

fatigue if they have FMS.

Thanks,

Cassie

[Guest guest]

In a message dated 5/25/03 12:08:58 PM Pacific Daylight Time,

celticmod@... writes:

Hey Mod,

Well, my take on it is that you are not obligated to listen to your mom go

through this. You can have a relationship with your mom without her having to

use you to work through some of the painful parts of her past.

It is quite alright to set up boundaries that protect you, and your feelings,

and to simply tell your mom you cant take that conversation with her.

If possible it might be beneficial to refer her to a professional who can

listen to her when she needs to talk about those tough times, but it is not

de-facto your " job " to be your mom's therapist. You are her daughter, not her

therapist. If she needs a therapist to talk to then that would be a highly

appropriate forum for her to have such conversations.

Warm regards

Malene

> I just don't know what to do when she wants to talk about these

> important parts of the past. I feel like I can't listen, and I feel

> like I must.

>

>

[Guest guest]

In a message dated 5/26/03 6:46:46 AM Pacific Daylight Time,

celticmod@... writes:

Hey Mod,

Your welcome. Well, before you go and recommend your own therapist you might

want to talk to him/her about it. I know I once wanted to have my therapist

see my husband as well, and she was unwilling to do so because she felt there

would be a conflict of interest.

So, first talk to your therapist about it. The other option is to have your

therapist recommend someone ).

Warm regards

Malene

> Hi Malene.

>

> I have thought about suggesting to her that she see a therapist.

> That's probably the best idea for starters. (Do you suppose I should

> recommend my therapist???

>

> Thanks for the feedback.

> -Mod

>

>

[Guest guest]

In a message dated 5/26/03 6:46:46 AM Pacific Daylight Time,

celticmod@... writes:

Hey Mod,

Your welcome. Well, before you go and recommend your own therapist you might

want to talk to him/her about it. I know I once wanted to have my therapist

see my husband as well, and she was unwilling to do so because she felt there

would be a conflict of interest.

So, first talk to your therapist about it. The other option is to have your

therapist recommend someone ).

Warm regards

Malene

> Hi Malene.

>

> I have thought about suggesting to her that she see a therapist.

> That's probably the best idea for starters. (Do you suppose I should

> recommend my therapist???

>

> Thanks for the feedback.

> -Mod

>

>

[Guest guest]

Hi Malene.

I have thought about suggesting to her that she see a therapist.

That's probably the best idea for starters. (Do you suppose I should

recommend my therapist???

Thanks for the feedback.

-Mod

> In a message dated 5/25/03 12:08:58 PM Pacific Daylight Time,

> celticmod@y... writes:

>

> Hey Mod,

>

> Well, my take on it is that you are not obligated to listen to

your mom go

> through this. You can have a relationship with your mom without

her having to

> use you to work through some of the painful parts of her past.

>

> It is quite alright to set up boundaries that protect you, and

your feelings,

> and to simply tell your mom you cant take that conversation with

her.

>

> If possible it might be beneficial to refer her to a professional

who can

> listen to her when she needs to talk about those tough times, but

it is not

> de-facto your " job " to be your mom's therapist. You are her

daughter, not her

> therapist. If she needs a therapist to talk to then that would be

a highly

> appropriate forum for her to have such conversations.

>

> Warm regards

>

> Malene

>

>

> > I just don't know what to do when she wants to talk about these

> > important parts of the past. I feel like I can't listen, and I

feel

> > like I must.

> >

> >

>

>

>

>

>

[Guest guest]

Hi Malene.

I have thought about suggesting to her that she see a therapist.

That's probably the best idea for starters. (Do you suppose I should

recommend my therapist???

Thanks for the feedback.

-Mod

> In a message dated 5/25/03 12:08:58 PM Pacific Daylight Time,

> celticmod@y... writes:

>

> Hey Mod,

>

> Well, my take on it is that you are not obligated to listen to

your mom go

> through this. You can have a relationship with your mom without

her having to

> use you to work through some of the painful parts of her past.

>

> It is quite alright to set up boundaries that protect you, and

your feelings,

> and to simply tell your mom you cant take that conversation with

her.

>

> If possible it might be beneficial to refer her to a professional

who can

> listen to her when she needs to talk about those tough times, but

it is not

> de-facto your " job " to be your mom's therapist. You are her

daughter, not her

> therapist. If she needs a therapist to talk to then that would be

a highly

> appropriate forum for her to have such conversations.

>

> Warm regards

>

> Malene

>

>

> > I just don't know what to do when she wants to talk about these

> > important parts of the past. I feel like I can't listen, and I

feel

> > like I must.

> >

> >

>

>

>

>

>

[Guest guest]

Dear Kathy:

Welcome to the group. How wonderful you are! We need more professional

caregivers like you. You and your patient are very lucky to have such a good

neurologist. I found that my dad's medical group eventually learned about LBD,

although they never changed his diagnosis from Alzheimer's disease. They did

change their treatment to the prescribed for LBD, that helped the family a lot

to cope with the situation.

Where are you located? We are interested to find physicians that actually

know about LBD and how to manage it. Good luck with your appointment tomorow.

My best to you and Maxine, Josie

[Guest guest]

Kathy,

Welcome, we don't have professional caregivers here and it is good to

see you here and looking for info.

My Mom passed away Oct '02 and I had her with me for 3 years and in a nh

the last year. I also was a lone caregiver. My daughter did help out

with her and listen to me vent and get me my web tv so I could talk to

others. I don't know what I would have done without her. People really

pull away, {I lost all my friends even} and it is a lone job.

I have heard a lot of people talk about conflict of meds. I never had

mom to Neurologist and when I did, it put her in a nh. He just handed

her to anther specialist who medicated her and it was a mess. I didn't

care if Mom sounded " crazy " because I knew she didn't tolerate drugs. I

think the MDs goals are different than mine were. Her GP did the best

at working with me. Mom couldn't take, and didn't like any drugs. She

took one in am for BP and a thyroid pill. And toward the end of her

time at home with me, I gave her 1/4 of a .50 mg Xantac, 3 x's a day.

ANd I came by that by accident when she started to get really nervous

about everything. That is not a drug recommended for any one with LBD,

but it just levelled her out and she was 87 years old and things were

getting worse, so I thought whats the difference, if it helped. Mom

never had a lot of the Parkinson symptoms. Her biggest problem, or I

should say mine, was that every other night for 3 years, she did not

sleep and that was when she would even lay down.

I never got the diagnosis of LBD officially. The MD said AD from the

beginning and I just didn't believe it after while. She was different

than those in her day care group. That was when I found LBD and it fit

much better. She had been falling for a long time and I just never put

it together with all this. ANd she had always been sensitive to drugs.

She never even liked OTC for headaches.

I do think MDs have goals but I don't know what they are. Mine was to

keep her as comfortable as I could, under the circumstances. I knew she

was dying but I didn't know how long that would take. My goal was to

keep her as comfortable as long as I could and to live the rest of her

living time with as much quality as I could provide. I fed her what she

wanted and except for the sleep issue, she was encouraged to go to day

care and she went 4 times a week. She said she hated it, but the day

care people said she was just fine until I got there.

I think who ever is working with the person, knows that person best and

is the most qualified to handle problems. Hope this helps.

Donna

PS I don't think Doctors are successful in getting rid of all the

symptoms. It often causes more problems. Especially with this group of

people and meds.

[Guest guest]

Kathy:

I am not the best to tell you about the drugs, I worked with them a very

short time. My dad got Aricept and Seroquel for the hallucinations and

aggressiveness, but it only worked for a few days. Good luck with your DR's

appointment. Josie

[Guest guest]

Kathy:

I am not the best to tell you about the drugs, I worked with them a very

short time. My dad got Aricept and Seroquel for the hallucinations and

aggressiveness, but it only worked for a few days. Good luck with your DR's

appointment. Josie

[Guest guest]

What meds were given for LBD? Thank you.

Kathy

Re: intro

Dear Kathy:

Welcome to the group. How wonderful you are! We need more professional

caregivers like you. You and your patient are very lucky to have such a good

neurologist. I found that my dad's medical group eventually learned about

LBD,

although they never changed his diagnosis from Alzheimer's disease. They did

change their treatment to the prescribed for LBD, that helped the family a lot

to cope with the situation.

Where are you located? We are interested to find physicians that actually

know about LBD and how to manage it. Good luck with your appointment tomorow.

My best to you and Maxine, Josie

[Guest guest]

Maxine has never been diagnosed AZ.

She does take Aricept which is a drug used for AZ a lot but also for Parkinsons

patients.

I did research this morning on her meds so that I have thorough info regarding

those when we see dr. tomorrow.

THANKS so much.

Kathy

Re: intro

Kathy,

Welcome, we don't have professional caregivers here and it is good to

see you here and looking for info.

My Mom passed away Oct '02 and I had her with me for 3 years and in a nh

the last year. I also was a lone caregiver. My daughter did help out

with her and listen to me vent and get me my web tv so I could talk to

others. I don't know what I would have done without her. People really

pull away, {I lost all my friends even} and it is a lone job.

I have heard a lot of people talk about conflict of meds. I never had

mom to Neurologist and when I did, it put her in a nh. He just handed

her to anther specialist who medicated her and it was a mess. I didn't

care if Mom sounded " crazy " because I knew she didn't tolerate drugs. I

think the MDs goals are different than mine were. Her GP did the best

at working with me. Mom couldn't take, and didn't like any drugs. She

took one in am for BP and a thyroid pill. And toward the end of her

time at home with me, I gave her 1/4 of a .50 mg Xantac, 3 x's a day.

ANd I came by that by accident when she started to get really nervous

about everything. That is not a drug recommended for any one with LBD,

but it just levelled her out and she was 87 years old and things were

getting worse, so I thought whats the difference, if it helped. Mom

never had a lot of the Parkinson symptoms. Her biggest problem, or I

should say mine, was that every other night for 3 years, she did not

sleep and that was when she would even lay down.

I never got the diagnosis of LBD officially. The MD said AD from the

beginning and I just didn't believe it after while. She was different

than those in her day care group. That was when I found LBD and it fit

much better. She had been falling for a long time and I just never put

it together with all this. ANd she had always been sensitive to drugs.

She never even liked OTC for headaches.

I do think MDs have goals but I don't know what they are. Mine was to

keep her as comfortable as I could, under the circumstances. I knew she

was dying but I didn't know how long that would take. My goal was to

keep her as comfortable as long as I could and to live the rest of her

living time with as much quality as I could provide. I fed her what she

wanted and except for the sleep issue, she was encouraged to go to day

care and she went 4 times a week. She said she hated it, but the day

care people said she was just fine until I got there.

I think who ever is working with the person, knows that person best and

is the most qualified to handle problems. Hope this helps.

Donna

PS I don't think Doctors are successful in getting rid of all the

symptoms. It often causes more problems. Especially with this group of

people and meds.