Re: I can't take it any longer/Rickye

[Guest guest]

For the most part I have to say, " Ditto " ; however, fibro does control my

life. I have been unable to get the help I need and am suffering horribly

from a number of things acting up right now and I can barely move. The only

reason I can be on-line is because I have a lap top that goes to bed with

me.

Tigger

_____

From: Fibromyalgia_Support_Group

[mailto:Fibromyalgia_Support_Group ] On Behalf Of Rickye Pool

Sent: Wednesday, August 01, 2007 5:57 PM

To: Fibromyalgia_Support_Group

Cc: gabesgram2001@...

Subject: Re: I can't take it any longer

Well..if you're still here to read, I wish you well..but I'll have you know

that I have NEVER " doctor hopped " .

We're not all so fortunate to have caring, understanding doctors. Some of us

live in small towns where the doctors may not be as educated or up-to-date

on FMS. In my town, the *only* rheumatologist does not treat FMS.

Fibro is NOT the " center of my life " . I joined this group to learn of new

techniques and ideas on how to deal with my FMS. I'm planning on seeing my

doc (of 10 years) about Lyrica because I've heard such good things about it

from the people here.

I'm learning a lot.

Now that I think of it, I'm planning on emailing this to you, as well as

posting. That way you'll know at least *one* person here is sorry that " I've

made you scream " .

Take care,

Rickye

gabesgram2001 <gabesgram2001@ <mailto:gabesgram2001%40yahoo.com> yahoo.com>

wrote:

I have hung around this board since last spring. I have posted

messages, answered questions, tried to be supportive where I felt I

could be. But I have reached the conclusion that I have to bow

out. I just can't be so wrapped in this illness. I have been

diagnosed with fibro for almost 9 years, have been on disability for

8, and started to get sick about 16 years ago. Actually, I think I

had been developing fibro since childhood because I had some awfully

strange illnesses as a child and on through my early adult years.

I have suffered through the humiliation of coworkers and employers

thinnking I was a hychondriac. I began to get negative reports for

too many absences when it became harder and harder to function. I

was a teacher with a Masters' degree and 20 post-graduate credits,

and at 52 had to leave my teaching position, which I loved, lose my

income with my daughter just getting married and my son in his

sophomore year of college. We needed my income. Fortunately I

qualified for disability through insurance from my employer and

three years later received SSD. That helped the income situation,

but it has been very hard dealing with the loss of my job and the

waste of my education.

I also suffered much in the beginning before I was finally hooked up

with the right Dr. and began treatment. I had no problem being

diagnosed by a rheumatologist, but that rheumy said fibro was

neither her interest nor her specialty, and referred me to a

specialist in Philadelphia for a consultation. The time between the

diagnosis and the referral appt. was two months. I had only 50mg of

Ultram to take at night, but nothing to take during the day. The

Dr. in Phila. took care of that, and referred me to a rheumy in my

area in Delaware because he said I had a very advanced case and

would need aggressive treatment, and there were several Drs. in DE

whose treatment approach he liked. So I began treatment with a Dr.

in Wilmington.

Since then I have learned to manage this awful illness that robs you

of your life. I sympathize with everyone on this board. But what

is getting me totally frustrated and what I cannot take any longer

is all the talk of looking for pain meds and Drs. to prescribe

them. In fact it is making me want to pull my hair out. It is

stressing me out so badly. That is why I am saying I have to bow

out of this board. I do not fault anyone their pain, nor condemn

anyone for it. I know what pain is. I was in San Francisco on

vacation the end of June. The night we were at Fisherman's Wharf it

was cold, windy, and very damp. I experienced pain in my back and

hips so severely that made walking so difficult that I just wanted

to lay on the ground and cry. And I had taken 5 Vicodin in the

course of that day. There was nothing I could do but reach down as

deep as I could, push as hard as I could, focus as much as I could,

and keep saying to myself, " just one more step, just one more step, "

until we got back to the cable car stand.

However, terrible experiences of pain for me are not the norm. You

can't say that I have a milder case of fibro, because I don't. What

I have is a positive attitude, and that didn't come easy either. It

is a decision you have to make, whether fibro is going to control

you, or are you going to control the fibro. When things are really

bad, I take the stronger pain meds and the muscle relaxers,

sometimes doubling the dosage (not for long), go to bed, watch a

movie, read a book, talk to a friend, do something to try to

distract myself from the pain and this illness. I am an avid figure

skating fan and have every figure skating competition on tape back

to the 1988 Olympics, so I will pop in a skating video and watch. I

will eat chocolate or cheesecake, and to heck with watching my diet

for the moment. All the while knowing that this too shall pass. I

forgot to mention heat....a hot tub, a shower, a soak in a bath, a

lavender scented neck wrap that I heat in the microwave feels

wonderful and smells wonderful, spray the room with lavender. If it

is a muscle tension headache, I put an ice pack behind my head and

lay down. There are a lot of things you can do besides take meds.

I had to change rhuemies a few years ago because the first one I had

took an administrative position in a hopital. My new rheumy is

wonderful and very experienced with fibro. She has added a massage

therapist to her staff which is helping a lot. I also like yoga.

It is probably the best thing I have ever done, as well as

swimming. Walking is difficult because my balance is not very good

and I have pain in my hips if I walk too much.

My rheumy will prescribe hydrocodone as long as I keep my appts.

with her on a regular basis. When I see her she gives me a complete

check up, I fill out a check list of what has been going on since my

last visit and we go over that. She asks me what meds I need, etc.

There are no problems. That is why I don't understand why you all

are having so much trouble with Drs.? Where do you live? Are there

not experienced, educated drs. in your area? I do not mean to sound

cynical or sarcastic, but sometimes I want to scream! If I was the

doctor, I would be suspicious too if someone came in who had been

hopping from one dr. to the next wanting pain meds. Fibro causes

pain alright, but there are other treatment options too. You should

get one dr. and stick with that dr. unless he/she is really, really

bad. Who is the dr. who diagnosed you? Are you near a hospital

that has a fibromyalgia center? Many large cities have them.

I do not mean in all sincerity not to offend anyone or step on

anyone's toes. I would just like to encourage everyone to step for

a moment and think. Are you making fibro the center of your life?

I know you are in pain, but you need to be distracted from that

pain. Pain feeds pain. Yes, you need pain medication. I hope and

pray that you find the dr. who will treat you. But stop and take a

look at yourselves and ask the question, what might I be doing to

perpetuate the pain? It is a valid question to ask yourself. And

rather than just sticking on this board, visit some web sites on

fibro. There are dozens of them. Read some of the suggestions

there. Or get some books from the library.

I will pray for you all, and I wish you all the best that life can

give you. I just have to say goodbye. This is not a place where I

belong. I cannot afford to sacrifice my health in order to try to

support others.

Many blessings,

Carley

[Guest guest]

Carley,

Hats off to you for finding other non-medication modalities for controlling

your pain. Massage, yoga, and your other suggestions are certainly viable

options for most people. It is unfortunate, however, that the people who are

discussing medication on this site are causing you such grief. I can understand

you want to help them by offering alternatives, but I wonder if some work on

boundaries might be helpful for you so you don't continue to get so upset by

others' discussions and concerns.

In a spirit of love,

Becca

Tigger wrote:

For the most part I have to say, " Ditto " ; however, fibro does control

my

life. I have been unable to get the help I need and am suffering horribly

from a number of things acting up right now and I can barely move. The only

reason I can be on-line is because I have a lap top that goes to bed with

me.

Tigger

_____

From: Fibromyalgia_Support_Group

[mailto:Fibromyalgia_Support_Group ] On Behalf Of Rickye Pool

Sent: Wednesday, August 01, 2007 5:57 PM

To: Fibromyalgia_Support_Group

Cc: gabesgram2001@...

Subject: Re: I can't take it any longer

Well..if you're still here to read, I wish you well..but I'll have you know

that I have NEVER " doctor hopped " .

We're not all so fortunate to have caring, understanding doctors. Some of us

live in small towns where the doctors may not be as educated or up-to-date

on FMS. In my town, the *only* rheumatologist does not treat FMS.

Fibro is NOT the " center of my life " . I joined this group to learn of new

techniques and ideas on how to deal with my FMS. I'm planning on seeing my

doc (of 10 years) about Lyrica because I've heard such good things about it

from the people here.

I'm learning a lot.

Now that I think of it, I'm planning on emailing this to you, as well as

posting. That way you'll know at least *one* person here is sorry that " I've

made you scream " .

Take care,

Rickye

gabesgram2001 <gabesgram2001@ <mailto:gabesgram2001%40yahoo.com> yahoo.com>

wrote:

I have hung around this board since last spring. I have posted

messages, answered questions, tried to be supportive where I felt I

could be. But I have reached the conclusion that I have to bow

out. I just can't be so wrapped in this illness. I have been

diagnosed with fibro for almost 9 years, have been on disability for

8, and started to get sick about 16 years ago. Actually, I think I

had been developing fibro since childhood because I had some awfully

strange illnesses as a child and on through my early adult years.

I have suffered through the humiliation of coworkers and employers

thinnking I was a hychondriac. I began to get negative reports for

too many absences when it became harder and harder to function. I

was a teacher with a Masters' degree and 20 post-graduate credits,

and at 52 had to leave my teaching position, which I loved, lose my

income with my daughter just getting married and my son in his

sophomore year of college. We needed my income. Fortunately I

qualified for disability through insurance from my employer and

three years later received SSD. That helped the income situation,

but it has been very hard dealing with the loss of my job and the

waste of my education.

I also suffered much in the beginning before I was finally hooked up

with the right Dr. and began treatment. I had no problem being

diagnosed by a rheumatologist, but that rheumy said fibro was

neither her interest nor her specialty, and referred me to a

specialist in Philadelphia for a consultation. The time between the

diagnosis and the referral appt. was two months. I had only 50mg of

Ultram to take at night, but nothing to take during the day. The

Dr. in Phila. took care of that, and referred me to a rheumy in my

area in Delaware because he said I had a very advanced case and

would need aggressive treatment, and there were several Drs. in DE

whose treatment approach he liked. So I began treatment with a Dr.

in Wilmington.

Since then I have learned to manage this awful illness that robs you

of your life. I sympathize with everyone on this board. But what

is getting me totally frustrated and what I cannot take any longer

is all the talk of looking for pain meds and Drs. to prescribe

them. In fact it is making me want to pull my hair out. It is

stressing me out so badly. That is why I am saying I have to bow

out of this board. I do not fault anyone their pain, nor condemn

anyone for it. I know what pain is. I was in San Francisco on

vacation the end of June. The night we were at Fisherman's Wharf it

was cold, windy, and very damp. I experienced pain in my back and

hips so severely that made walking so difficult that I just wanted

to lay on the ground and cry. And I had taken 5 Vicodin in the

course of that day. There was nothing I could do but reach down as

deep as I could, push as hard as I could, focus as much as I could,

and keep saying to myself, " just one more step, just one more step, "

until we got back to the cable car stand.

However, terrible experiences of pain for me are not the norm. You

can't say that I have a milder case of fibro, because I don't. What

I have is a positive attitude, and that didn't come easy either. It

is a decision you have to make, whether fibro is going to control

you, or are you going to control the fibro. When things are really

bad, I take the stronger pain meds and the muscle relaxers,

sometimes doubling the dosage (not for long), go to bed, watch a

movie, read a book, talk to a friend, do something to try to

distract myself from the pain and this illness. I am an avid figure

skating fan and have every figure skating competition on tape back

to the 1988 Olympics, so I will pop in a skating video and watch. I

will eat chocolate or cheesecake, and to heck with watching my diet

for the moment. All the while knowing that this too shall pass. I

forgot to mention heat....a hot tub, a shower, a soak in a bath, a

lavender scented neck wrap that I heat in the microwave feels

wonderful and smells wonderful, spray the room with lavender. If it

is a muscle tension headache, I put an ice pack behind my head and

lay down. There are a lot of things you can do besides take meds.

I had to change rhuemies a few years ago because the first one I had

took an administrative position in a hopital. My new rheumy is

wonderful and very experienced with fibro. She has added a massage

therapist to her staff which is helping a lot. I also like yoga.

It is probably the best thing I have ever done, as well as

swimming. Walking is difficult because my balance is not very good

and I have pain in my hips if I walk too much.

My rheumy will prescribe hydrocodone as long as I keep my appts.

with her on a regular basis. When I see her she gives me a complete

check up, I fill out a check list of what has been going on since my

last visit and we go over that. She asks me what meds I need, etc.

There are no problems. That is why I don't understand why you all

are having so much trouble with Drs.? Where do you live? Are there

not experienced, educated drs. in your area? I do not mean to sound

cynical or sarcastic, but sometimes I want to scream! If I was the

doctor, I would be suspicious too if someone came in who had been

hopping from one dr. to the next wanting pain meds. Fibro causes

pain alright, but there are other treatment options too. You should

get one dr. and stick with that dr. unless he/she is really, really

bad. Who is the dr. who diagnosed you? Are you near a hospital

that has a fibromyalgia center? Many large cities have them.

I do not mean in all sincerity not to offend anyone or step on

anyone's toes. I would just like to encourage everyone to step for

a moment and think. Are you making fibro the center of your life?

I know you are in pain, but you need to be distracted from that

pain. Pain feeds pain. Yes, you need pain medication. I hope and

pray that you find the dr. who will treat you. But stop and take a

look at yourselves and ask the question, what might I be doing to

perpetuate the pain? It is a valid question to ask yourself. And

rather than just sticking on this board, visit some web sites on

fibro. There are dozens of them. Read some of the suggestions

there. Or get some books from the library.

I will pray for you all, and I wish you all the best that life can

give you. I just have to say goodbye. This is not a place where I

belong. I cannot afford to sacrifice my health in order to try to

support others.

Many blessings,

Carley

[Guest guest]

It appears that I need to clarify some comments made in my original

message. It is not discussions about medications that bother me.

It is the discussions that never end by the same people on this

board. It also bothered me very much that a major interest

regarding Lyrica was the " high, " the " buzz, " the " euphoric

feeling. " Talk like that is definitely not a very good

representation of Fibromyalgia patients. Talk like that would most

definitely cause Drs. to be hesitant to prescribe pain medication.

The discussion then proceeded to medical marijuana and then even

heroin was mentioned. I know that the heroin was mentioned in jest

(I hope). But what if a new person to the group saw that right off

the bar. What kind of impression would that make? In fact what

kind of impression would the whole discussion I described in the

first paragraph make to someone new to the group. It disgusted me

and I have been around for a while.

I know that there is a very big controversy regarding prescribing

narcotic medication to people with chronic pain. I also know there

are many ways people have manipulated doctors and pharmacies in

order to get prescription narcotics. All of this does nothing but

harm those who really need the medications. Doctors are monitored

very carefully regarding the prescriptions they write for narcotic

medication. It has to be shown justification. I believe I stated

in my previous message that my Dr. will prescribe hydrocodone for me

as long as I keep my regularly scheduled appointments. She also

knows that on average that 1 prescription written for 40 tablets

with 2 refills will last me 6 months. I only use this medication

for severe pain in very severe situations. I also use it when I am

traveling, because that is not a normal circumstance and my body

reacts to the change. But the most I will take is 2 in one day.

I have had fibro for almost 9 years and I have been taking Ultram

for almost all of that time. Ultram is a relative of the opiate

family of drugs. It is used extensively for treatment of fibro. I

know that people react differently to medications. Ultram doesn't

make me totally pain free, but it works well enough that I can

function. I try to always take the minimum amount of pain

medication, and use other ways to manage the pain if I can. The

more pain medication you use, the more pain medication you will need

on down the road.

I do not have a problem discussing medication. I have responded a

number of times on this board to questions asked about different

medications. What bothers me is what I perceive to be a persistent

search for drs. who will prescribe narcotic pain medication. That

causes me to begin to ask serious questions about what is going on,

and that is what I can't take anymore.

I would welcome discussions about healthy ways to manage this

illness, about positive things people have done that has helped

them. Discussions about topics that are going to support others,

lift them up and not drag them down. I dropped in on another

message board today to see what it was like, and I can tell you I

saw nothing of what I have seen on this board.

So, in conclusion, it is not that discussing medications that upsets

me. It is what is being discussed disgusts me. There is a big

difference.

[Guest guest]

I have tried not to reply to this discussion, but now I find I must add my 2

cents. I have based my life on not judging people. Who am I to tell people

how to lead their lives? After all, how perfect have I been at managing my

own?

That being said, I feel you take a rather harsh attitude regarding the way

others manage their pain. I have been in pain for a very long time. I have

been prescribed all the low level pain relievers and anti-inflamatories

which never worked. It has taken me a very long time to have hydrocodone

prescibed for me.

I know the problem doctors have—I worked for a doctor who was visited by the

DEA for prescribing too many pain pills. Alas, he was not my doctor. I had

decided that I should not mix my professional life with my personal life.

He prescribed too many painkillers because he was a compassionate man who

wanted to help people. He did not have any other reason or make any extra

money because he was trying to relieve the pain of his patients. Yet he

still had to deal with the censure of the government.

From experience I can say that the " high, " the " buzz, " the " euphoric

feeling " will, unfortunately, probably not last for these people (although I

wish it would). I do not begrudge them a few days or weeks or months or

years of feeling wonderful. Most of us have spent a very long time feeling

horrible.

I understand the frustration of many of the people in this group. I told my

doctor of 12 years many times that different pain medication she prescribed

did not even touch my pain. She eventually sent me to a pain clinic after

my pain became extreme. At the pain clinic I received hydrocodone.

However, it took me several months of complaining that the drugs I had been

given by my primary care doctor did not work to get that prescription. The

hydrocodone does not take away my pain, it only takes the edge off.

There are times that I am half out of my mind with the pain. Given the

opportunity, I would probably try any drug I could get my hands on for

relief (even if it was an illegal one). At times like that, I feel what is

harm when my quality of life has dwindled to dealing with out of control

pain? Who does it hurt but me? Why should I not be allowed to do whatever

it takes to make my life more livable?

I cannot work, hold a book, use a pencil to work puzzles, sew, crossstitch,

quilt, or cook—the pasttimes I used to enjoy. Why not--Because this ailment

has taken away my ability to use my hands effectively. Now I have to depend

on my husband to do almost everything, because I cannot do the things that

used to bring me joy. Believe me I have tried the yoga, the relaxation

tapes, meditation, aroma therapy—everything that I hear about. I fear

nothing is going to take the pain and stiffness of my hands away. Nothing

is going to give me back my dexterity. I will probably never be able to

type without pain. I have to type messages with stops and starts and

sometimes I lose my train of thought—fibro fog.

Now I try to take my mind off pain by watching TV. Although I enjoy certain

shows, it gets boring quickly.

I wish I could travel. Even a short trip in the car to the doctor causes me

tremendous pain. Whether someone takes me or I drive myself, it takes 2 or

3 days for me to get back to my normal self. The doctor and I theorize that

it is the vibration and stopping and starting motion that causes the pain to

escalate.

I cannot shop or go for a walk because it is very painful for me to walk or

just to stand.

Everyone handles things differently. If you are able to push through the

pain, (which believe me I did for years) I applaud you. If alternative

methods of dealing with pain work for you, you should be grateful. If you

have a doctor that understands what you are going through, you are extremely

lucky.

As for me, I am just trying to deal with one day at a time. If someone new

happens to read a post where I am complaining about not getting the drugs I

need to handle pain or my wish for something, anything, that will help me

get through the day, maybe that person is not yet ready to join a message

board where people feel free to express how they feel without the fear of

rejection. Maybe this new person’s condition has not reached that level. I

hope it never does.

I am sorry if anything I have said was hurtful to anyone, I know what it is

to be sensitive. I am glad I got this off my chest however because I have

been trying to learn to stand up for myself and I may as well start here.

I am sorry this message became so lengthy. However, this is another example

of the freedom we have. We can read the emails or not as we wish.

Heartfelt best wishes for a pain free day,

Ann

_____

From: Fibromyalgia_Support_Group

[mailto:Fibromyalgia_Support_Group ] On Behalf Of

gabesgram2001

Sent: Thursday, August 02, 2007 4:37 AM

To: Fibromyalgia_Support_Group

Subject: Re: I can't take it any longer/Rickye

It appears that I need to clarify some comments made in my original

message. It is not discussions about medications that bother me.

It is the discussions that never end by the same people on this

board. It also bothered me very much that a major interest

regarding Lyrica was the " high, " the " buzz, " the " euphoric

feeling. " Talk like that is definitely not a very good

representation of Fibromyalgia patients. Talk like that would most

definitely cause Drs. to be hesitant to prescribe pain medication.

The discussion then proceeded to medical marijuana and then even

heroin was mentioned. I know that the heroin was mentioned in jest

(I hope). But what if a new person to the group saw that right off

the bar. What kind of impression would that make? In fact what

kind of impression would the whole discussion I described in the

first paragraph make to someone new to the group. It disgusted me

and I have been around for a while.

I know that there is a very big controversy regarding prescribing

narcotic medication to people with chronic pain. I also know there

are many ways people have manipulated doctors and pharmacies in

order to get prescription narcotics. All of this does nothing but

harm those who really need the medications. Doctors are monitored

very carefully regarding the prescriptions they write for narcotic

medication. It has to be shown justification. I believe I stated

in my previous message that my Dr. will prescribe hydrocodone for me

as long as I keep my regularly scheduled appointments. She also

knows that on average that 1 prescription written for 40 tablets

with 2 refills will last me 6 months. I only use this medication

for severe pain in very severe situations. I also use it when I am

traveling, because that is not a normal circumstance and my body

reacts to the change. But the most I will take is 2 in one day.

I have had fibro for almost 9 years and I have been taking Ultram

for almost all of that time. Ultram is a relative of the opiate

family of drugs. It is used extensively for treatment of fibro. I

know that people react differently to medications. Ultram doesn't

make me totally pain free, but it works well enough that I can

function. I try to always take the minimum amount of pain

medication, and use other ways to manage the pain if I can. The

more pain medication you use, the more pain medication you will need

on down the road.

I do not have a problem discussing medication. I have responded a

number of times on this board to questions asked about different

medications. What bothers me is what I perceive to be a persistent

search for drs. who will prescribe narcotic pain medication. That

causes me to begin to ask serious questions about what is going on,

and that is what I can't take anymore.

I would welcome discussions about healthy ways to manage this

illness, about positive things people have done that has helped

them. Discussions about topics that are going to support others,

lift them up and not drag them down. I dropped in on another

message board today to see what it was like, and I can tell you I

saw nothing of what I have seen on this board.

So, in conclusion, it is not that discussing medications that upsets

me. It is what is being discussed disgusts me. There is a big

difference.

[Guest guest]

Rickye,

I'm with you when it comes to the talk about medications. I do

believe this could be harmful to others in pain and seeking relief.

It seemed as if it was all in jest but we can't take chances that

everyone interprets it that way. In some states, Dr's are given jail

sentences in some states for prescribing narcotics to help relieve

pain. A good rule to follow is to not write anything in an e-mail

that you wouldn't like to see on the front page of the newspaper! I

know that is an exaggeration but we must be careful not to hurt

others seeking legitimate relief.

Margaret B

> It appears that I need to clarify some comments made in my original

> message. It is not discussions about medications that bother me.

> It is the discussions that never end by the same people on this

> board. It also bothered me very much that a major interest

> regarding Lyrica was the " high, " the " buzz, " the " euphoric

> feeling. " Talk like that is definitely not a very good

> representation of Fibromyalgia patients. Talk like that would most

> definitely cause Drs. to be hesitant to prescribe pain medication.

>

> The discussion then proceeded to medical marijuana and then even

> heroin was mentioned. I know that the heroin was mentioned in jest

> (I hope). But what if a new person to the group saw that right off

> the bar. What kind of impression would that make? In fact what

> kind of impression would the whole discussion I described in the

> first paragraph make to someone new to the group. It disgusted me

> and I have been around for a while.

>

> I know that there is a very big controversy regarding prescribing

> narcotic medication to people with chronic pain. I also know there

> are many ways people have manipulated doctors and pharmacies in

> order to get prescription narcotics. All of this does nothing but

> harm those who really need the medications. Doctors are monitored

> very carefully regarding the prescriptions they write for narcotic

> medication. It has to be shown justification. I believe I stated

> in my previous message that my Dr. will prescribe hydrocodone for me

> as long as I keep my regularly scheduled appointments. She also

> knows that on average that 1 prescription written for 40 tablets

> with 2 refills will last me 6 months. I only use this medication

> for severe pain in very severe situations. I also use it when I am

> traveling, because that is not a normal circumstance and my body

> reacts to the change. But the most I will take is 2 in one day.

>

> I have had fibro for almost 9 years and I have been taking Ultram

> for almost all of that time. Ultram is a relative of the opiate

> family of drugs. It is used extensively for treatment of fibro. I

> know that people react differently to medications. Ultram doesn't

> make me totally pain free, but it works well enough that I can

> function. I try to always take the minimum amount of pain

> medication, and use other ways to manage the pain if I can. The

> more pain medication you use, the more pain medication you will need

> on down the road.

>

> I do not have a problem discussing medication. I have responded a

> number of times on this board to questions asked about different

> medications. What bothers me is what I perceive to be a persistent

> search for drs. who will prescribe narcotic pain medication. That

> causes me to begin to ask serious questions about what is going on,

> and that is what I can't take anymore.

>

> I would welcome discussions about healthy ways to manage this

> illness, about positive things people have done that has helped

> them. Discussions about topics that are going to support others,

> lift them up and not drag them down. I dropped in on another

> message board today to see what it was like, and I can tell you I

> saw nothing of what I have seen on this board.

>

> So, in conclusion, it is not that discussing medications that upsets

> me. It is what is being discussed disgusts me. There is a big

> difference.

>

>

>

[Guest guest]

I just wanted to say how good the timing of your post was for me personally

Ann.. it made me feel much better to know I was not completely alone.

From: Ann Gott

To: Fibromyalgia_Support_Group

Sent: Thursday, August 02, 2007 5:00 AM

Subject: RE: I can't take it any longer/Rickye

I have tried not to reply to this discussion, but now I find I must add my 2

cents. I have based my life on not judging people. Who am I to tell people

how to lead their lives? After all, how perfect have I been at managing my

own?

[Guest guest]

Margaret,

I think you are attributing an email to me that I didn't write. I did not

write the post down below.

Margaret Badner wrote:

Rickye,

I'm with you when it comes to the talk about medications. I do

believe this could be harmful to others in pain and seeking relief.

It seemed as if it was all in jest but we can't take chances that

everyone interprets it that way. In some states, Dr's are given jail

sentences in some states for prescribing narcotics to help relieve

pain. A good rule to follow is to not write anything in an e-mail

that you wouldn't like to see on the front page of the newspaper! I

know that is an exaggeration but we must be careful not to hurt

others seeking legitimate relief.

Margaret B

> It appears that I need to clarify some comments made in my original

> message. It is not discussions about medications that bother me.

> It is the discussions that never end by the same people on this

> board. It also bothered me very much that a major interest

> regarding Lyrica was the " high, " the " buzz, " the " euphoric

> feeling. " Talk like that is definitely not a very good

> representation of Fibromyalgia patients. Talk like that would most

> definitely cause Drs. to be hesitant to prescribe pain medication.

>

> The discussion then proceeded to medical marijuana and then even

> heroin was mentioned. I know that the heroin was mentioned in jest

> (I hope). But what if a new person to the group saw that right off

> the bar. What kind of impression would that make? In fact what

> kind of impression would the whole discussion I described in the

> first paragraph make to someone new to the group. It disgusted me

> and I have been around for a while.

>

> I know that there is a very big controversy regarding prescribing

> narcotic medication to people with chronic pain. I also know there

> are many ways people have manipulated doctors and pharmacies in

> order to get prescription narcotics. All of this does nothing but

> harm those who really need the medications. Doctors are monitored

> very carefully regarding the prescriptions they write for narcotic

> medication. It has to be shown justification. I believe I stated

> in my previous message that my Dr. will prescribe hydrocodone for me

> as long as I keep my regularly scheduled appointments. She also

> knows that on average that 1 prescription written for 40 tablets

> with 2 refills will last me 6 months. I only use this medication

> for severe pain in very severe situations. I also use it when I am

> traveling, because that is not a normal circumstance and my body

> reacts to the change. But the most I will take is 2 in one day.

>

> I have had fibro for almost 9 years and I have been taking Ultram

> for almost all of that time. Ultram is a relative of the opiate

> family of drugs. It is used extensively for treatment of fibro. I

> know that people react differently to medications. Ultram doesn't

> make me totally pain free, but it works well enough that I can

> function. I try to always take the minimum amount of pain

> medication, and use other ways to manage the pain if I can. The

> more pain medication you use, the more pain medication you will need

> on down the road.

>

> I do not have a problem discussing medication. I have responded a

> number of times on this board to questions asked about different

> medications. What bothers me is what I perceive to be a persistent

> search for drs. who will prescribe narcotic pain medication. That

> causes me to begin to ask serious questions about what is going on,

> and that is what I can't take anymore.

>

> I would welcome discussions about healthy ways to manage this

> illness, about positive things people have done that has helped

> them. Discussions about topics that are going to support others,

> lift them up and not drag them down. I dropped in on another

> message board today to see what it was like, and I can tell you I

> saw nothing of what I have seen on this board.

>

> So, in conclusion, it is not that discussing medications that upsets

> me. It is what is being discussed disgusts me. There is a big

> difference.

>

>

>

[Guest guest]

Rickye,

Whoops! Sorry! Perhaps if the person who writes the letters signed

their name at the end, it would help.

Margaret B

> Margaret,

>

> I think you are attributing an email to me that I didn't write.

> I did not write the post down below.

>

> Margaret Badner wrote:

> Rickye,

> I'm with you when it comes to the talk about medications. I do

> believe this could be harmful to others in pain and seeking relief.

> It seemed as if it was all in jest but we can't take chances that

> everyone interprets it that way. In some states, Dr's are given jail

> sentences in some states for prescribing narcotics to help relieve

> pain. A good rule to follow is to not write anything in an e-mail

> that you wouldn't like to see on the front page of the newspaper! I

> know that is an exaggeration but we must be careful not to hurt

> others seeking legitimate relief.

>

> Margaret B

[Guest guest]

Just a note, Ann. Somehow my name got attached to the subject line. *I did

not* write the original post that chastised everyone here for talking about

doctors and pain meds. I just want to clear that up!

As for you, I'm sorry this dreaded disease has taken so much from you. My

heart goes out to you.

*soft hugs*

Rickye

Partions of post have been edited. -Jennie

[Guest guest]

It's okay Margaret. You're right--signatures would be great!

Rickye

Margaret Badner wrote:

Rickye,

Whoops! Sorry! Perhaps if the person who writes the letters signed

their name at the end, it would help.

Margaret B

> Margaret,

>

> I think you are attributing an email to me that I didn't write.

> I did not write the post down below.

>

> Margaret Badner wrote:

> Rickye,

> I'm with you when it comes to the talk about medications. I do

> believe this could be harmful to others in pain and seeking relief.

> It seemed as if it was all in jest but we can't take chances that

> everyone interprets it that way. In some states, Dr's are given jail

> sentences in some states for prescribing narcotics to help relieve

> pain. A good rule to follow is to not write anything in an e-mail

> that you wouldn't like to see on the front page of the newspaper! I

> know that is an exaggeration but we must be careful not to hurt

> others seeking legitimate relief.

>

> Margaret B

[Guest guest]

Ann,

I loved your heartfelt message! I don’t think anyone could have

said it better. I have days when I can read and days I can’t. Sometimes I

look at all of my craft stuff and want to cry because it sits there and I

sit here. Of course, sometimes I do cry. Yesterday and today have been

relatively good days. However, after sweeping my laundry room I have

spasming muscles and here I sit again. I’m working on going into remission

but until then, I’m still in need of things to get me through day to day and

sometimes week to you, you know how it goes. It was only a couple of days

ago I was a total mess. I try really hard to only take pain meds at night

so I can at least get some sleep. The only exception is when I’m either

having a migraine or extreme back spasms. We all do the best we can. We

are all different. I just hope my journey to remission is a success so that

I can help all of you.

Big hugs,

Jane

******************************************************

Subject: RE: I can't take it any longer/Rickye

I have tried not to reply to this discussion, but now I find I must add my 2

cents. I have based my life on not judging people. Who am I to tell people

how to lead their lives? After all, how perfect have I been at managing my

own?

That being said, I feel you take a rather harsh attitude regarding the way

others manage their pain. I have been in pain for a very long time. I have

been prescribed all the low level pain relievers and anti-inflamatories

which never worked. It has taken me a very long time to have hydrocodone

prescibed for me.

I know the problem doctors have—I worked for a doctor who was visited by the

DEA for prescribing too many pain pills. Alas, he was not my doctor. I had

decided that I should not mix my professional life with my personal life.

He prescribed too many painkillers because he was a compassionate man who

wanted to help people. He did not have any other reason or make any extra

money because he was trying to relieve the pain of his patients. Yet he

still had to deal with the censure of the government.

From experience I can say that the " high, " the " buzz, " the " euphoric

feeling " will, unfortunately, probably not last for these people (although I

wish it would). I do not begrudge them a few days or weeks or months or

years of feeling wonderful. Most of us have spent a very long time feeling

horrible.

I understand the frustration of many of the people in this group. I told my

doctor of 12 years many times that different pain medication she prescribed

did not even touch my pain. She eventually sent me to a pain clinic after

my pain became extreme. At the pain clinic I received hydrocodone.

However, it took me several months of complaining that the drugs I had been

given by my primary care doctor did not work to get that prescription. The

hydrocodone does not take away my pain, it only takes the edge off.

There are times that I am half out of my mind with the pain. Given the

opportunity, I would probably try any drug I could get my hands on for

relief (even if it was an illegal one). At times like that, I feel what is

harm when my quality of life has dwindled to dealing with out of control

pain? Who does it hurt but me? Why should I not be allowed to do whatever

it takes to make my life more livable?

I cannot work, hold a book, use a pencil to work puzzles, sew, crossstitch,

quilt, or cook—the pasttimes I used to enjoy. Why not--Because this ailment

has taken away my ability to use my hands effectively. Now I have to depend

on my husband to do almost everything, because I cannot do the things that

used to bring me joy. Believe me I have tried the yoga, the relaxation

tapes, meditation, aroma therapy—everything that I hear about. I fear

nothing is going to take the pain and stiffness of my hands away. Nothing

is going to give me back my dexterity. I will probably never be able to

type without pain. I have to type messages with stops and starts and

sometimes I lose my train of thought—fibro fog.

Now I try to take my mind off pain by watching TV. Although I enjoy certain

shows, it gets boring quickly.

I wish I could travel. Even a short trip in the car to the doctor causes me

tremendous pain. Whether someone takes me or I drive myself, it takes 2 or

3 days for me to get back to my normal self. The doctor and I theorize that

it is the vibration and stopping and starting motion that causes the pain to

escalate.

I cannot shop or go for a walk because it is very painful for me to walk or

just to stand.

Everyone handles things differently. If you are able to push through the

pain, (which believe me I did for years) I applaud you. If alternative

methods of dealing with pain work for you, you should be grateful. If you

have a doctor that understands what you are going through, you are extremely

lucky.

As for me, I am just trying to deal with one day at a time. If someone new

happens to read a post where I am complaining about not getting the drugs I

need to handle pain or my wish for something, anything, that will help me

get through the day, maybe that person is not yet ready to join a message

board where people feel free to express how they feel without the fear of

rejection. Maybe this new person’s condition has not reached that level. I

hope it never does.

I am sorry if anything I have said was hurtful to anyone, I know what it is

to be sensitive. I am glad I got this off my chest however because I have

been trying to learn to stand up for myself and I may as well start here.

I am sorry this message became so lengthy. However, this is another example

of the freedom we have. We can read the emails or not as we wish.

Heartfelt best wishes for a pain free day,

Ann

_____

From: Fibromyalgia_ <mailto:Fibromyalgia_Support_Group%40yahoogroups.com>

Support_Group

[mailto:Fibromyalgia_ <mailto:Fibromyalgia_Support_Group%40yahoogroups.com>

Support_Group ] On Behalf Of

gabesgram2001

Sent: Thursday, August 02, 2007 4:37 AM

To: Fibromyalgia_ <mailto:Fibromyalgia_Support_Group%40yahoogroups.com>

Support_Group

Subject: Re: I can't take it any longer/Rickye

It appears that I need to clarify some comments made in my original

message. It is not discussions about medications that bother me.

It is the discussions that never end by the same people on this

board. It also bothered me very much that a major interest

regarding Lyrica was the " high, " the " buzz, " the " euphoric

feeling. " Talk like that is definitely not a very good

representation of Fibromyalgia patients. Talk like that would most

definitely cause Drs. to be hesitant to prescribe pain medication.

The discussion then proceeded to medical marijuana and then even

heroin was mentioned. I know that the heroin was mentioned in jest

(I hope). But what if a new person to the group saw that right off

the bar. What kind of impression would that make? In fact what

kind of impression would the whole discussion I described in the

first paragraph make to someone new to the group. It disgusted me

and I have been around for a while.

I know that there is a very big controversy regarding prescribing

narcotic medication to people with chronic pain. I also know there

are many ways people have manipulated doctors and pharmacies in

order to get prescription narcotics. All of this does nothing but

harm those who really need the medications. Doctors are monitored

very carefully regarding the prescriptions they write for narcotic

medication. It has to be shown justification. I believe I stated

in my previous message that my Dr. will prescribe hydrocodone for me

as long as I keep my regularly scheduled appointments. She also

knows that on average that 1 prescription written for 40 tablets

with 2 refills will last me 6 months. I only use this medication

for severe pain in very severe situations. I also use it when I am

traveling, because that is not a normal circumstance and my body

reacts to the change. But the most I will take is 2 in one day.

I have had fibro for almost 9 years and I have been taking Ultram

for almost all of that time. Ultram is a relative of the opiate

family of drugs. It is used extensively for treatment of fibro. I

know that people react differently to medications. Ultram doesn't

make me totally pain free, but it works well enough that I can

function. I try to always take the minimum amount of pain

medication, and use other ways to manage the pain if I can. The

more pain medication you use, the more pain medication you will need

on down the road.

I do not have a problem discussing medication. I have responded a

number of times on this board to questions asked about different

medications. What bothers me is what I perceive to be a persistent

search for drs. who will prescribe narcotic pain medication. That

causes me to begin to ask serious questions about what is going on,

and that is what I can't take anymore.

I would welcome discussions about healthy ways to manage this

illness, about positive things people have done that has helped

them. Discussions about topics that are going to support others,

lift them up and not drag them down. I dropped in on another

message board today to see what it was like, and I can tell you I

saw nothing of what I have seen on this board.

So, in conclusion, it is not that discussing medications that upsets

me. It is what is being discussed disgusts me. There is a big

difference.

[Guest guest]

I finally chose to stand up for myself, then tongue-lash the wrong person.

Thank you for your compassionate words, they made me cry. Most of the

people I know say how do you feel and then are in the middle of another

subject before I answer. I feels good for someone to validate my problems.

Thank you and Sorry for the False Identification.

'

Ann

_____

From: Fibromyalgia_Support_Group

[mailto:Fibromyalgia_Support_Group ] On Behalf Of Rickye Pool

Sent: Thursday, August 02, 2007 5:15 PM

To: Fibromyalgia_Support_Group

Subject: RE: I can't take it any longer/Rickye

Just a note, Ann. Somehow my name got attached to the subject line. *I did

not* write the original post that chastised everyone here for talking about

doctors and pain meds. I just want to clear that up!

As for you, I'm sorry this dreaded disease has taken so much from you. My

heart goes out to you.

*soft hugs*

Rickye

Partions of post have been edited. -Jennie

[Guest guest]

I have also felt alone through this thread. Great to have the support of a

fellow “bad girl” LOL.

Have a great night.

Ann

_____

From: Fibromyalgia_Support_Group

[mailto:Fibromyalgia_Support_Group ] On Behalf Of Pegasus

Realm

Sent: Thursday, August 02, 2007 3:34 PM

To: Fibromyalgia_Support_Group

Subject: Re: I can't take it any longer/Rickye

I just wanted to say how good the timing of your post was for me personally

Ann.. it made me feel much better to know I was not completely alone.

From: Ann Gott

To: Fibromyalgia_ <mailto:Fibromyalgia_Support_Group%40yahoogroups.com>

Support_Group

Sent: Thursday, August 02, 2007 5:00 AM

Subject: RE: I can't take it any longer/Rickye

I have tried not to reply to this discussion, but now I find I must add my 2

cents. I have based my life on not judging people. Who am I to tell people

how to lead their lives? After all, how perfect have I been at managing my

own?

[Guest guest]

Jane,

Thank you for your kind words. I cry sometimes also. It seems when I am

down something comes along to “kick” me (figuratively). I hope someday they

come out with the magic pill, then we can all feel good and start worry

about what flavor ice cream we want at Baskin Robbins 31 Flavors instead of

whether we are going to be able to sleep tonight.

Your email helped me to feel better tonight. It was a blessing.

Thank you,

Ann

_____

From: Fibromyalgia_Support_Group

[mailto:Fibromyalgia_Support_Group ] On Behalf Of Mike & Jane

Gagner

Sent: Thursday, August 02, 2007 6:01 PM

To: Fibromyalgia_Support_Group

Subject: RE: I can't take it any longer/Rickye

Ann,

I loved your heartfelt message! I don’t think anyone could have

said it better. I have days when I can read and days I can’t. Sometimes I

look at all of my craft stuff and want to cry because it sits there and I

sit here. Of course, sometimes I do cry. Yesterday and today have been

relatively good days. However, after sweeping my laundry room I have

spasming muscles and here I sit again. I’m working on going into remission

but until then, I’m still in need of things to get me through day to day and

sometimes week to you, you know how it goes. It was only a couple of days

ago I was a total mess. I try really hard to only take pain meds at night

so I can at least get some sleep. The only exception is when I’m either

having a migraine or extreme back spasms. We all do the best we can. We

are all different. I just hope my journey to remission is a success so that

I can help all of you.

Big hugs,

Jane

******************************************************

Subject: RE: I can't take it any longer/Rickye

I have tried not to reply to this discussion, but now I find I must add my 2

cents. I have based my life on not judging people. Who am I to tell people

how to lead their lives? After all, how perfect have I been at managing my

own?

That being said, I feel you take a rather harsh attitude regarding the way

others manage their pain. I have been in pain for a very long time. I have

been prescribed all the low level pain relievers and anti-inflamatories

which never worked. It has taken me a very long time to have hydrocodone

prescibed for me.

I know the problem doctors have—I worked for a doctor who was visited by the

DEA for prescribing too many pain pills. Alas, he was not my doctor. I had

decided that I should not mix my professional life with my personal life.

He prescribed too many painkillers because he was a compassionate man who

wanted to help people. He did not have any other reason or make any extra

money because he was trying to relieve the pain of his patients. Yet he

still had to deal with the censure of the government.

From experience I can say that the " high, " the " buzz, " the " euphoric

feeling " will, unfortunately, probably not last for these people (although I

wish it would). I do not begrudge them a few days or weeks or months or

years of feeling wonderful. Most of us have spent a very long time feeling

horrible.

I understand the frustration of many of the people in this group. I told my

doctor of 12 years many times that different pain medication she prescribed

did not even touch my pain. She eventually sent me to a pain clinic after

my pain became extreme. At the pain clinic I received hydrocodone.

However, it took me several months of complaining that the drugs I had been

given by my primary care doctor did not work to get that prescription. The

hydrocodone does not take away my pain, it only takes the edge off.

There are times that I am half out of my mind with the pain. Given the

opportunity, I would probably try any drug I could get my hands on for

relief (even if it was an illegal one). At times like that, I feel what is

harm when my quality of life has dwindled to dealing with out of control

pain? Who does it hurt but me? Why should I not be allowed to do whatever

it takes to make my life more livable?

I cannot work, hold a book, use a pencil to work puzzles, sew, crossstitch,

quilt, or cook—the pasttimes I used to enjoy. Why not--Because this ailment

has taken away my ability to use my hands effectively. Now I have to depend

on my husband to do almost everything, because I cannot do the things that

used to bring me joy. Believe me I have tried the yoga, the relaxation

tapes, meditation, aroma therapy—everything that I hear about. I fear

nothing is going to take the pain and stiffness of my hands away. Nothing

is going to give me back my dexterity. I will probably never be able to

type without pain. I have to type messages with stops and starts and

sometimes I lose my train of thought—fibro fog.

Now I try to take my mind off pain by watching TV. Although I enjoy certain

shows, it gets boring quickly.

I wish I could travel. Even a short trip in the car to the doctor causes me

tremendous pain. Whether someone takes me or I drive myself, it takes 2 or

3 days for me to get back to my normal self. The doctor and I theorize that

it is the vibration and stopping and starting motion that causes the pain to

escalate.

I cannot shop or go for a walk because it is very painful for me to walk or

just to stand.

Everyone handles things differently. If you are able to push through the

pain, (which believe me I did for years) I applaud you. If alternative

methods of dealing with pain work for you, you should be grateful. If you

have a doctor that understands what you are going through, you are extremely

lucky.

As for me, I am just trying to deal with one day at a time. If someone new

happens to read a post where I am complaining about not getting the drugs I

need to handle pain or my wish for something, anything, that will help me

get through the day, maybe that person is not yet ready to join a message

board where people feel free to express how they feel without the fear of

rejection. Maybe this new person’s condition has not reached that level. I

hope it never does.

I am sorry if anything I have said was hurtful to anyone, I know what it is

to be sensitive. I am glad I got this off my chest however because I have

been trying to learn to stand up for myself and I may as well start here.

I am sorry this message became so lengthy. However, this is another example

of the freedom we have. We can read the emails or not as we wish.

Heartfelt best wishes for a pain free day,

Ann

_____

From: Fibromyalgia_ <mailto:Fibromyalgia_Support_Group%40yahoogroups.com>

Support_Group@ <mailto:Support_Group%40yahoogroups.com> yahoogroups.com

[mailto:Fibromyalgia_ <mailto:Fibromyalgia_Support_Group%40yahoogroups.com>

Support_Group@ <mailto:Support_Group%40yahoogroups.com> yahoogroups.com] On

Behalf Of

gabesgram2001

Sent: Thursday, August 02, 2007 4:37 AM

To: Fibromyalgia_ <mailto:Fibromyalgia_Support_Group%40yahoogroups.com>

Support_Group@ <mailto:Support_Group%40yahoogroups.com> yahoogroups.com

Subject: Re: I can't take it any longer/Rickye

It appears that I need to clarify some comments made in my original

message. It is not discussions about medications that bother me.

It is the discussions that never end by the same people on this

board. It also bothered me very much that a major interest

regarding Lyrica was the " high, " the " buzz, " the " euphoric

feeling. " Talk like that is definitely not a very good

representation of Fibromyalgia patients. Talk like that would most

definitely cause Drs. to be hesitant to prescribe pain medication.

The discussion then proceeded to medical marijuana and then even

heroin was mentioned. I know that the heroin was mentioned in jest

(I hope). But what if a new person to the group saw that right off

the bar. What kind of impression would that make? In fact what

kind of impression would the whole discussion I described in the

first paragraph make to someone new to the group. It disgusted me

and I have been around for a while.

I know that there is a very big controversy regarding prescribing

narcotic medication to people with chronic pain. I also know there

are many ways people have manipulated doctors and pharmacies in

order to get prescription narcotics. All of this does nothing but

harm those who really need the medications. Doctors are monitored

very carefully regarding the prescriptions they write for narcotic

medication. It has to be shown justification. I believe I stated

in my previous message that my Dr. will prescribe hydrocodone for me

as long as I keep my regularly scheduled appointments. She also

knows that on average that 1 prescription written for 40 tablets

with 2 refills will last me 6 months. I only use this medication

for severe pain in very severe situations. I also use it when I am

traveling, because that is not a normal circumstance and my body

reacts to the change. But the most I will take is 2 in one day.

I have had fibro for almost 9 years and I have been taking Ultram

for almost all of that time. Ultram is a relative of the opiate

family of drugs. It is used extensively for treatment of fibro. I

know that people react differently to medications. Ultram doesn't

make me totally pain free, but it works well enough that I can

function. I try to always take the minimum amount of pain

medication, and use other ways to manage the pain if I can. The

more pain medication you use, the more pain medication you will need

on down the road.

I do not have a problem discussing medication. I have responded a

number of times on this board to questions asked about different

medications. What bothers me is what I perceive to be a persistent

search for drs. who will prescribe narcotic pain medication. That

causes me to begin to ask serious questions about what is going on,

and that is what I can't take anymore.

I would welcome discussions about healthy ways to manage this

illness, about positive things people have done that has helped

them. Discussions about topics that are going to support others,

lift them up and not drag them down. I dropped in on another

message board today to see what it was like, and I can tell you I

saw nothing of what I have seen on this board.

So, in conclusion, it is not that discussing medications that upsets

me. It is what is being discussed disgusts me. There is a big

difference.