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,

I would venture to say that someone IS addressing your pain! The

medications that you are taking should, hopefully, allow you to " get a handle

on that

pain " . Many medications have a primary and also a secondary purpose. That is

likely in your case. Why not give these meds a few weeks just to see what

does happen? You have nothing to lose!

Carole M.

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oh, more one thing: i'm on meds. possibly the wrong ones. they put me

on zyprexa 10 mg, and my face puffed up like..a pufferfish, and made

me hungry, and sleepy..now they want me to start abilify. i know that

back pain & depression/anxiety goe hand in hand sometimes, but no one

is addressing my back pain!! grrr!!

>

> Hey all,

> Hope everyone is..hanging in there. Not trying to bring any

> negativity, but I managed to wean myself off meds, yes, I have

pain,

> but I've heard of people, even post-surgery (and I mean very few),

who

> are not on meds. The tapering off wasn't as hard as I thought it

would

> be, and now that I'm supposed not addicted..my back pain, is..well

I'm

> feeling what I've been numbing, and even people have done that, and

> after a couple weeks 'gotten used to a certain amount of pain'. If

it

> wasn't for pain, I know I could live w/o painkillers. I'm just

> frustrated right now, because I can't work, people see my face,

think

> I'm psychotic, or just had MAJOR surgery - my WHOLE LIFE IS

AFFECTED

> right now - and my friends don't even want to be around me. Plus,

my

> doctor's are giving me a hard time about meds, they think I don't

need

> them anymore. *sigh*

> I don't know if this post is going to help anyone, even my

venting,

> but I just wanted to vent, anyone else gone through this? I mean I

know

> my back isn't as bad as other's people's but I'm just frustrated..I

> can't seem to be patient at all these days (because of all the

physical

> pain)

>

>

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True, thanks for the advice. It can't get worse, can it? However,

it's not medication directed directly at the source of the pain, but,

it's something that should help me be 'less sensitive in general.'

>

> ,

>

> I would venture to say that someone IS addressing your pain! The

> medications that you are taking should, hopefully, allow you

to " get a handle on that

> pain " . Many medications have a primary and also a secondary

purpose. That is

> likely in your case. Why not give these meds a few weeks just to

see what

> does happen? You have nothing to lose!

>

> Carole M.

>

>

>

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,

I really was not speaking of your being " less sensitive " . I, too, have had

awful back pain over the years due to severe scoliosis. I have learned that

there are second and third uses of drugs, and that some drugs encourage our

making endorphins, etc., that definitely help dull pain. One type of drug for

that is the antidepressant. Please understand that I had not wanted to make

fun of your pain or of what your doctors are giving you. Believe me.

Sincerely,

Carole M.

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Carole,

I didn't take it that way at all. I'm willing to (and am) giving it

a shot..tnx for feedback,

>

> ,

>

> I really was not speaking of your being " less sensitive " . I, too,

have had

> awful back pain over the years due to severe scoliosis. I have

learned that

> there are second and third uses of drugs, and that some drugs

encourage our

> making endorphins, etc., that definitely help dull pain. One type

of drug for

> that is the antidepressant. Please understand that I had not

wanted to make

> fun of your pain or of what your doctors are giving you. Believe

me.

> Sincerely,

> Carole M.

>

>

>

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, that was a really beautiful letter you wrote. You do know so

much more than I about these things! I actually did not want to say what I

knew

about Abilify. My granddaughter, who has bipolar disorder, has had to take

it. I cannot imagine why these meds are being dispensed with no counseling!

Anyway, I could never have said it as you did, ! Thank you!

And, Jill, I do hope that you are able to get to a Pain Clinic. That was

the real answer for me. Even then, it was a " trial and error " system until we

hit on what my MD calls the " right cocktail " . The best of luck to you!

Carole

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This post addresses some issues recently raised by and

Carole M.

Zyprexa (olanzapine) -- the medication could not tolerate --

is technically not an antidepressant. It is used to treat mania in

bipolar disorder but is not FDA-approved for depression per se.

Abilify (aripriprazole)is even more popular these days for

preventing rapid cycling in bipolar disorder. (Generally, " rapid

cycling " means switching between depression and mania -- or

hypomania -- at least as often as every few months.) Like Zyprexa,

Abilify is classified as an atypical antipsychotic. It is also used

to " dial down " the delusions and hallucinations that may torment

people with schizophrenia.

It is true that certain antidepressants are sometimes used for the

kind of pain that results specifically from an " overly sensitized "

nervous system. As you probably know, having such pain is not the

same as being a hypersensitive or overly sensitive person. Rather,

this " nerve pain " is a physiologic phenomenon, very common in those

of us who have been through one or more scoliosis surgeries or

revisions. But only a specific type of antidepressant, one of the so-

called tricyclics (prototype: imipramine), is prescribed for such

pain. The dose is much smaller than the effective dose for

depression. For instance, a friend of mine had trouble sleeping

because of leg pain resulting from diabetic neuropathy. She was

greatly helped by just 10 mg of Elavil, taken each night around her

bedtime. Nerve pain may also be treated with certain

anticonvulsants, e.g., Neurontin.

As I understand it, 's doctor(s) have her on a different

regimen entirely. I am not sure there is evidence that a drug like

Abilify raises endorphin levels or otherwise helps serious back

pain. Also, , do you have any idea what might be causing

your pain? Pain management specialists are likely to prescribe very

different remedies for " muscle pain " and " nerve pain " respectively.

Many of us are likely to have complex pain syndromes involving

multiple mechanisms. For instance, a surgeon has recently cut

through multiple layers of tissue in our backs, plus we have

inflammation from early arthritic changes, plus the pain of

irritated nerve roots has in turn caused additional irritation,

inducing a vicious downward spiral. In addition, we not be healing

normally after surgery or may have some unanticipated problem with

newly implanted hardware.

As I see it, , your primary symptom is not being addressed

at all. This would -- and should -- upset any of us! There is no

excuse for allowing anyone with persistent pain to go on suffering.

Regrettably, however, the undermedication of pain is all too common.

This is why the APF and other organizations recently urged concerned

individuals to fax or email their representatives in Congress,

asking them to attend a hearing on proposed legislation to improve

the treatment of pain in the U.S. (My own representative wrote back

to explain why she favoreed an even stronger bill.)

Many physicians are afraid of ecouraging addiction by prescribing

narcotics. In reality, the rate of addiction is about .01 percent --

that's one one-hundredth of one percent, or 1 in 10,000 -- among

patients who receive opiates for pain and who have no history of

drug addiction. Even those who do have a history of substance abuse

or addiction may need to take prescription narcotics, under very

close and careful medical supervision, if their pain is sufficiently

severe.

Physicians may also be intimidated by tight federal regulations and

the reported zealotry of some Drug Enforcement Administration

efforts. It is also unfortunate that so many of us -- doctors and

patients alike -- have been exposed to so many erroneous and

sensationalistic press reports about the most useful and effective

long-acting narcotics, particularly OxyContin. When someone with

terrible back pain is enabled to function better in daily life --

sometimes to function at all -- by a medication such as OxyContin,

MSContin, or methadone, responsibly prescribed by the surgeon or

pain management specialist, this is a very good and merciful thing.

It has nothing to do with the world of black market trafficking and

intentional alteration of long-acting drugs for the purpose of

getting a " quick hit " and an artificial " high. "

, I do not know your history. I trust that you know why you

are receiving potent antipsychotic mood stabilizers. I also trust

you are satisfied that these are appropriate drugs for your

particular condition. Regarding your untreated pain, you may just

need to be very insistent and persistent, bugging your doctors for

appropriate treatment or a more specialized referral until they come

throug for you. In today's health care system, we all have to be our

own advocates. Sometimes this means being a real squeaky wheel or

even a pain in the gluteus maximus to our doctors. I do know how

difficult this can be, especially when you are already debilitated

by chronic pain.

I am so sorry to hear about your recent and current ordeal. Please

try not to let anyone, including those with MD credentials, frighten

or guilt-trip you about needing pain medication, simply out of their

own ignorance or fear. I wish you the very best and hope you will

soon be able to access the help you need and deserve.

Best,

>

> ,

>

> I really was not speaking of your being " less sensitive " . I,

too, have had

> awful back pain over the years due to severe scoliosis. I have

learned that

> there are second and third uses of drugs, and that some drugs

encourage our

> making endorphins, etc., that definitely help dull pain. One

type of drug for

> that is the antidepressant. Please understand that I had not

wanted to make

> fun of your pain or of what your doctors are giving you. Believe

me.

> Sincerely,

> Carole M.

>

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Dear ,

Thank you so much for the time and thought you put into this post! I'm sure

this has helped a lot of people with questions about different medications.

Could you give a little more information about the legislation on pain

medications hearing? Has it already taken place?

I agree completely with you that so many doctors are afraid to prescribe

narcotics because they hear stories, many of them unfortunately true, about

physicians who have been to hell and back because their treatment of pain in

their patients was misunderstood by non-medical people in power positions. I

know doctors who decided it was easier to avoid writing narcotic prescriptions

in most cases, and not at all to the chronic patient. I saw those same doctors

refuse to give patients who were for some reason referred to them when they had

to be hospitalized, the narcotic medications that they routinely took outside

the hospital. Add withdrawal to some other problem or illness and the

hospitalization was even worse than it had to be for the poor patient. It was

the worse possible case scenario and the nursing staff, there with the poor

patient for 12 hours at the time, had their hands tied in so many cases. Just

awful!

But, as in every profession, there are the bad apples. The doctors who do

abuse narcotics themselves, and/or write copious narcotic prescriptions to

patients with no medical need for them. And often they are written to people the

doctor doesn't actually lay their eyes, much less their hands, on. So the

legislators hear about these few and hopefully far between, and jump up and down

and make new laws regulating perfectly safe drugs that are the very life-blood

for the pain patient. So....... where is the sane and reasonable solution?

Goodness- I didn't mean to veer off into this so deeply. As I noted in an

earlier response, I am now the happy owner of a lap top and can read all the

posts and rant away in response. I'm like a child with a new toy- the new will

soon wear off and I won't be writing a novelette to every post. Anyway, my cat

has just jumped on top of me, joining one of my three dogs on the bed, so I

guess it's time to sign off!

I would appreciate the information about that hearing if you have a minute to

write.

Thank you!

Bea

Rasche <feistyfounder@...> wrote:

This post addresses some issues recently raised by and

Carole M.

Zyprexa (olanzapine) -- the medication could not tolerate --

is technically not an antidepressant. It is used to treat mania in

bipolar disorder but is not FDA-approved for depression per se.

Abilify (aripriprazole)is even more popular these days for

preventing rapid cycling in bipolar disorder. (Generally, " rapid

cycling " means switching between depression and mania -- or

hypomania -- at least as often as every few months.) Like Zyprexa,

Abilify is classified as an atypical antipsychotic. It is also used

to " dial down " the delusions and hallucinations that may torment

people with schizophrenia.

It is true that certain antidepressants are sometimes used for the

kind of pain that results specifically from an " overly sensitized "

nervous system. As you probably know, having such pain is not the

same as being a hypersensitive or overly sensitive person. Rather,

this " nerve pain " is a physiologic phenomenon, very common in those

of us who have been through one or more scoliosis surgeries or

revisions. But only a specific type of antidepressant, one of the so-

called tricyclics (prototype: imipramine), is prescribed for such

pain. The dose is much smaller than the effective dose for

depression. For instance, a friend of mine had trouble sleeping

because of leg pain resulting from diabetic neuropathy. She was

greatly helped by just 10 mg of Elavil, taken each night around her

bedtime. Nerve pain may also be treated with certain

anticonvulsants, e.g., Neurontin.

As I understand it, 's doctor(s) have her on a different

regimen entirely. I am not sure there is evidence that a drug like

Abilify raises endorphin levels or otherwise helps serious back

pain. Also, , do you have any idea what might be causing

your pain? Pain management specialists are likely to prescribe very

different remedies for " muscle pain " and " nerve pain " respectively.

Many of us are likely to have complex pain syndromes involving

multiple mechanisms. For instance, a surgeon has recently cut

through multiple layers of tissue in our backs, plus we have

inflammation from early arthritic changes, plus the pain of

irritated nerve roots has in turn caused additional irritation,

inducing a vicious downward spiral. In addition, we not be healing

normally after surgery or may have some unanticipated problem with

newly implanted hardware.

As I see it, , your primary symptom is not being addressed

at all. This would -- and should -- upset any of us! There is no

excuse for allowing anyone with persistent pain to go on suffering.

Regrettably, however, the undermedication of pain is all too common.

This is why the APF and other organizations recently urged concerned

individuals to fax or email their representatives in Congress,

asking them to attend a hearing on proposed legislation to improve

the treatment of pain in the U.S. (My own representative wrote back

to explain why she favoreed an even stronger bill.)

Many physicians are afraid of ecouraging addiction by prescribing

narcotics. In reality, the rate of addiction is about .01 percent --

that's one one-hundredth of one percent, or 1 in 10,000 -- among

patients who receive opiates for pain and who have no history of

drug addiction. Even those who do have a history of substance abuse

or addiction may need to take prescription narcotics, under very

close and careful medical supervision, if their pain is sufficiently

severe.

Physicians may also be intimidated by tight federal regulations and

the reported zealotry of some Drug Enforcement Administration

efforts. It is also unfortunate that so many of us -- doctors and

patients alike -- have been exposed to so many erroneous and

sensationalistic press reports about the most useful and effective

long-acting narcotics, particularly OxyContin. When someone with

terrible back pain is enabled to function better in daily life --

sometimes to function at all -- by a medication such as OxyContin,

MSContin, or methadone, responsibly prescribed by the surgeon or

pain management specialist, this is a very good and merciful thing.

It has nothing to do with the world of black market trafficking and

intentional alteration of long-acting drugs for the purpose of

getting a " quick hit " and an artificial " high. "

, I do not know your history. I trust that you know why you

are receiving potent antipsychotic mood stabilizers. I also trust

you are satisfied that these are appropriate drugs for your

particular condition. Regarding your untreated pain, you may just

need to be very insistent and persistent, bugging your doctors for

appropriate treatment or a more specialized referral until they come

throug for you. In today's health care system, we all have to be our

own advocates. Sometimes this means being a real squeaky wheel or

even a pain in the gluteus maximus to our doctors. I do know how

difficult this can be, especially when you are already debilitated

by chronic pain.

I am so sorry to hear about your recent and current ordeal. Please

try not to let anyone, including those with MD credentials, frighten

or guilt-trip you about needing pain medication, simply out of their

own ignorance or fear. I wish you the very best and hope you will

soon be able to access the help you need and deserve.

Best,

>

> ,

>

> I really was not speaking of your being " less sensitive " . I,

too, have had

> awful back pain over the years due to severe scoliosis. I have

learned that

> there are second and third uses of drugs, and that some drugs

encourage our

> making endorphins, etc., that definitely help dull pain. One

type of drug for

> that is the antidepressant. Please understand that I had not

wanted to make

> fun of your pain or of what your doctors are giving you. Believe

me.

> Sincerely,

> Carole M.

>

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Bea,

I have read both of your recent posts, and just wanted you to know that you,

like , have helped our cause immensely because of your ability to

state it so well!

I think that you should run, not walk, to the American Pain Foundation site

(.org) and join! Their goal is our goal! As my own doctor has told me, we

who need the pain meds never get a " buzz " like those who misuse drugs! We are

fighting pain! We are not filling our " off time " with casual drug use!

Thank you for your time and energy. I'm sure that many people will fare

better because of these great posts,

Sincerely,

Carole

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Dear Carole,

Thank you so much for your kind words- I clicked on 'send' after what I felt

was possibly an over-the-top rant of personal feelings and for a moment wanted

to pull the post back and redo it. So I feel better. I will do as you said and

go to the Pain Foundation site. I saw it referenced in the post by

and planned to find out more. We all do need to stand together in our fight to

keep our doctors protected who work in the pain management field, or we may wake

up one day to find their offices closed. That is such a real fear to me it's

hard to even express the degree of feelings I have. I know everyone else must

have the same concerns. You are so right about the difference in our experience

with the drugs and the 'recreational' users' experiences. People can't

understand why I seem " normal " while taking such high powered medications. Of

course I don't tell just anyone that I'm even on meds, but those close to me

know. I've actually had a smart person say " it must

be nice to go around in la-la land all day " ! Others seem to think that it

would be impossible for me to have any pain, like a headache, or pain when I

broke my toe. There is huge need for education. I had to quit watching 'House'

on Fox because of the way they handled the doctor's chronic pain on the show. It

was a horrible example of pain meds being misused and pain misjudged by other

'professionals'. I know they just play doctors on TV. But it is the mindset of

most of America.

Hoping everyone has a great day!

Bea

Bea,

I have read both of your recent posts, and just wanted you to know that you,

like , have helped our cause immensely because of your ability to

state it so well!

I think that you should run, not walk, to the American Pain Foundation site

(.org) and join! Their goal is our goal! As my own doctor has told me, we

who need the pain meds never get a " buzz " like those who misuse drugs! We are

fighting pain! We are not filling our " off time " with casual drug use!

Thank you for your time and energy. I'm sure that many people will fare

better because of these great posts,

Sincerely,

Carole

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Dear , Beverly, and Carole and those that replied to my

earlier posts. THANK YOU OH SO MUCH! I replied earlier with a long

post but when I hit the send button it took forever and finally an

error page came up. Therefore I do not think it went through. I

have cable internet so I believe it was the server on the other

end.

Anyhow, after reading your posts, I think that I will be sending a

letter to my state representatives and I am considering writing my

full story down and send it to the local paper for consideration of

print. When I do, I am also going to send it to the doctors that I

have been to years past just to educate them. If it possibly helps

out one person futuristically, then it will be more than worth the

trouble!

For those whom have fear of becoming addicted to the medication I am

going to say this. I made myself go a week without my medication

when I was fearing of being addicted. I do smoke cigarettes and am

addicted to nicotine and know what addiction is. The only thing

that I had to contend with was the physical withdrawals of the

medication. I had a bad headache and my pain was throughout my

whole body and seemed magnified. This could have been just me being

use to lesser pain and previously having a higher tolerance for the

pain or my pain just plainly increasing in that time frame. I spoke

to my pharmacist about the possibility of addiction. He stated that

yes there would be a good possibility that your body will be

dependent on the pain medication and when stopped you could

encounter withdrawal symptoms. He stated that that can be easily

dealt with when the time comes that my pain is gone. He stated that

the addiction comes when you don't need the meds and want the meds

to get a high. Truthfully I don't know what kind of high you get

off of pain meds. They can make you sleepy and foggy brained which

is a side effect I don't like. Sometimes I take a vivarin (I don't

drink coffee) just to get some pep back and not be sleepy.

Anyway, I would like to put out a request to you with scoliosis. I,

as I am sure many others, would like to hear your story regarding

your scoliosis and the impact it has made in your life. I don't

know about others, but in my case, I would like to hear details. It

may give insight to some of us whom are finally beginning to receive

treatment and options that we may explore or trials that we may be

up against. Perhaps tell us some of what your neurological problems

are and what has and what has not helped you. THANK YOU SO MUCH

EVERYONE! The only true stories I have heard are the success

stories that the doctors put up on their web sites to bring in more

business.

>

> Bea,

> I have read both of your recent posts, and just wanted you to

know that you,

> like , have helped our cause immensely because of your

ability to

> state it so well!

>

> I think that you should run, not walk, to the American Pain

Foundation site

> (.org) and join! Their goal is our goal! As my own doctor has

told me, we

> who need the pain meds never get a " buzz " like those who misuse

drugs! We are

> fighting pain! We are not filling our " off time " with casual

drug use!

>

> Thank you for your time and energy. I'm sure that many people

will fare

> better because of these great posts,

>

> Sincerely,

>

> Carole

>

>

>

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