Re: Complaint Day!

[Guest guest]

Sorry Ray...oh we hate those bad flare days don't we. WIsh I could

help...

Having one too. Commiserating with you and thinking and praying for you.

I have a new problem though .All of a sudden my pain meds are bothering

me.

I have never had a problem re getting, dizzy, or " knocked-out " from

that. Now all of a sudden I am.Can't stay awake when I take them.

Anyone care to venture a guess why?

Lyn

~~~~~~~~He who laughs, lasts~~~~~~~

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[Guest guest]

Never had that problem Lyn. Pretty much don't get dizzy from pain meds

unless its codeine or similar, which also makes me nauseated. To tell

the truth I've only been taking pain meds since July. Didn't know what

a difference in my life they would make. Was always afraid of side

effects and possible addiction. Currently on Wygesic (tylenol &

Darvon), with Serzone. Also take Ambien to sleep. No Ambien, no sleep.

Ray

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Ray in Virginia

[Guest guest]

Thanks Ray, never had this problem either. Weird, very weird. It's like

when you first start taking them and they hit you hard. Hate this

drugged out feeling. But it is a choice between that and pain..guess

what I will take?LOL!

I no longer worry about addiction. I will take care of that when and if

I ever go into remission...and will be glad to do so. SIde effects..same

way. Worry later. I need the meds so I feel I have no choice and the

worry gets me no where fast !

Lyn

~~~~~~~~He who laughs, lasts~~~~~~~

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[Guest guest]

Lyn, I understand about needing the meds and forget the side effects.

We are often trapped by the side effects because we haven't been given

much choice with the meds. There are lots more meds out there that a

doc could prescribe for you that won't have the same side-effects, or

possibly none. Ask your doc. And don't worry about addiction, from my

readings here and elsewhere, addiction is extremely rare in truly

chronic pain patients. I believe you definitely fall into that

category! Wouldn't worry about addiction any more. Seek relief!

Ray

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Ray in Virginia

[Guest guest]

Ray, I have been on the same pain meds for a year! Thats what is

bothering me, that why am I reacting to them now?

Thanks for the reassurance. I get so very tired of well meaning

relatives telling me I am an addict. Like I have said before...if I

could only give them 5 minutes of the pain.

Say, a woman on my RA list got Arava today. It must have hit the

shelves. Will that help you at all?

By the way, if I haven't told you lately...you are a very wonderfu and

supportive friend. Thank you.

Lyn

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[Guest guest]

Lyn,

I have this happen to me at times, no matter what pain med I'm taking. I

don't know what causes it, I figure it might be hormonal, food related,

sleep/not enough sleep related, or just the phase of the moon! :-) It goes

away though so I don't worry about it. I just take it as it comes.

Currently I'm still having a horrible time staying awake although it's

subsided somewhat since I dropped one med (Ken, it's the

trazadone....stopped it completely over two weeks ago. Like you said, made

a big difference). The sleepiness is related to the amount of pain med I'm

sure, and possibly because I'm not sleeping as well as I was when I was

taking the traz. for sleep. I see the doc in a week and a half so will go

over it more in depth then. LIke you, I figure I'd rather be sleepy than in

totaly agony.

Also, I don't worry about addiction. I used to, gawd I was so anxious about

it ALL the time, so much that I never was getting the relief I could get

from the med. This past summer was really a huge turning point for me with

this issue. I finally started taking ENOUGH of the pain meds. Almost NO

chronic pain patients who truly need the narcotics get addicted. There's

all kinds of studies and papers written about this. And I figure that even

if I DID get addicted, so what? It's better than being in so much agony.

Actually, our bodies may become dependent on having the drug in them but

that's not addiction as normally defined. We're not abusing the meds nor

are we drug seekers, THAT is what gets the addiction label, among other

things. I don't even worry about tolerance anymore. My Dr. has reassured

me so many times that if I become tolerant, as I have a couple times, then

we'll just switch to something else! So that worry is out the window.

If the effects you're feeling last for a few days or so I'd probably call

the doc. Otherwise, just figure that you may have the same thing I do, for

whatever reason.

CUL!

Ruthie

From: lynmari@... (Lynda Gottschalk)

Thanks Ray, never had this problem either. Weird, very weird. It's like

when you first start taking them and they hit you hard. Hate this

drugged out feeling. But it is a choice between that and pain..guess

what I will take?LOL!

I no longer worry about addiction. I will take care of that when and if

I ever go into remission...and will be glad to do so. SIde effects..same

way. Worry later. I need the meds so I feel I have no choice and the

worry gets me no where fast !

Lyn

[Guest guest]

Lyn, thank you for the compliment. I consider you a friend also. I am

enjoying getting to know folks on the list. As to Arava or any of the

newer meds on the market or about to go on the market, I have no idea

how I would do on them. Changing meds is always difficult for me. I

haven't found anything to date that works as well as the Feldene

(piroxicam) does for me. When I go off of it, to try something else, I

have to go back on it because of intensifying of pain and inflammation.

I pray that someone will discover the " magic bullet " for Reiters. Until

then, we will just have to wait and see what works for others and for

me.

As to addiction, I would discount your relatives statements. Seems

to me that their might be something on this subject in our archives from

Darwent about chronic pain and addiction. The statistics are

overwhelming against the probability of addiction by chronic pain

patients. Just print out some of the research and hand it to them when

they say anything...no comment, just the paper. I refuse to get into

discussions with folks who have no experience and no knowledge, just bad

opinions with no facts. I seethe, but I keep silent. They can't argue

with medical facts from respected research facilities. Everyone's got

an opinion most of which end up putting some of the blame on me for my

own medical situation. However, I didn't ask for this disease, and I am

not responsible for having it or any of its consequences. I will not

own any guilt for having this disease, nor should you about having your

" alphabet soup " or diseases.

Ray

----------------------------------------------------

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14278868@...

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Ray in Virginia

[Guest guest]

Ruthie, thanks for supporting my belief that chronic pain patients

seldom, if ever, become addicted to pain medications. Only, you said it

so much better than I ever could! Thanks for sharing your experience in

taking these meds with Lyn. One of the great things about this list is

the experiences of others confirm our own experiences and help us to

understand our situations much better.

Ray

----------------------------------------------------

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* Page me online through my Personal Communication Center:

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* Send me E-mail Express directly to my computer screen

14278868@...

For downloading ICQ at http://www.icq.com/

Ray in Virginia

[Guest guest]

Thanks Ray...good ideas!

Lyn

~~~~~~~~He who laughs, lasts~~~~~~~

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[Guest guest]

Thanks to you too Ruthie...agreed on the addiction issue.

Never thought of lack of sleep...haven't been sleeping as much as usual

so maybe that is why the meds are bothering me.

Hate this fighting to stay awake when I am awake business though.

I am thinking of accepting their offer to go on the morphine pump. Heard

very good things about pain control on this. Anyone here use it?

Lyn

~~~~~~~~He who laughs, lasts~~~~~~~

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[Guest guest]

>

>patients. Just print out some of the research and hand it to them when

>they say anything...no comment, just the paper. I refuse to get into

>discussions with folks who have no experience and no knowledge, just bad

>opinions with no facts. I seethe, but I keep silent. They can't argue

>with medical facts from respected research facilities.

Ray, I think I'll do just that and make sure I have the printouts ready the

next time my sister is around. Last Fall, when I called her, FINALLY, on

the abusive behavior she was displaying while drunk and told her I could no

longer deal with her when she was drinking she countered with comments that

I was a drug addict. She's a pharmacy tech but has NO formal training

whatsoever in that field. Her education is in graphic arts for heaven's

sake! I let the comment go but I have to say it happened when I was still

struggling with the acceptance that I needed these drugs to help me. I

talked w/my doc not long after this incident and told her what sis said and

the Dr. said something I have kept as my mantra, so to say, when/if I hear

folks talk about addiction in chronic pain patients. The doc said, " Just

ignore it as much as you can, let it go in one ear and out the other, AND

always consider the source. " Still and all it's not easy and even though I

kept my mouth shut I really, as you put it, seethed and guess I still do

when I think of it! (seethe, seethe)

CUL,

Ruthie

===========================

Ruthie Cunliffe K2ZQ

ruthie@...

http://www.cunliffegroup.com/ruthie/

Oh, no! Not ANOTHER learning experience!

[Guest guest]

>

>

>Ruthie, thanks for supporting my belief that chronic pain patients

>seldom, if ever, become addicted to pain medications. Only, you said it

>so much better than I ever could! Thanks for sharing your experience in

>taking these meds with Lyn. One of the great things about this list is

>the experiences of others confirm our own experiences and help us to

>understand our situations much better.

>Ray

Thanks Ray. Although I really can't take all the credit for this. Last

Summer was my last struggle with this issue and I FINALLY took it to a

chronic pain support group online that I'd been off and on involved in since

December '97. EVERYONE there was so supportive, so helpful and a fount of

information! Somewhere I read a good article about opiod receptors in

chronic pain patients and how they differ from those who are not in chronic

pain. If I find the URL I'll pass it on. It was terrific! This last

struggle was the one that really got me to break through to acceptance of

the need for these meds, not temporarily, not just enough to take the edge

off, but totally and completely a part of my life now. Whatta relief that

was!

CUL,

Ruthie

[Guest guest]

From: lynmari@... (Lynda Gottschalk)

Thanks to you too Ruthie...agreed on the addiction issue.

Never thought of lack of sleep...haven't been sleeping as much as usual

so maybe that is why the meds are bothering me.

Hate this fighting to stay awake when I am awake business though.

I am thinking of accepting their offer to go on the morphine pump. Heard

very good things about pain control on this. Anyone here use it?

Lyn

The fighting to stay awake is wearing on me also. I will talk in depth with

the doc next week about it. The best weapon I have against it is to do

something that keeps me a bit active but not so much that my pain level

moves up. If I do things like read or sometimes just browsing the web, and

listening to music, that kind of activity, I fall asleep. Drives me nuts!

The morphine pump, from everyone I've ever talked to, is a real good thing.

There's adjustments and all that, as there is with anything I suppose, but

the chronic pain group online that I was active with had a number of folks

who were using the pump and related all their experiences with it. Overall

I got the message that they were much better ON the pump than off it. I

will see if I can pop over into that group and get a few of the folks to

join the list and relay their experiences. Or if they prefer, I'll pass

along their email addresses to you if you wish.

CUL,

Ruthie

===========================

Ruthie Cunliffe K2ZQ

ruthie@...

http://www.cunliffegroup.com/ruthie/

Oh, no! Not ANOTHER learning experience!

[Guest guest]

Lyn

the only reason I would want to come off my predisone is because I hate how

they make me feel emotionally, But I am no martyr. I take them everyday.

Anyone that would rather suffer for no reason is a lot sicker than they

thought. no offense to anyone

Angie

[Guest guest]

Good for you Ruthie...I guess I will have to learn to be more graphic!

Lyn

~~~~~~~~He Who Laughs,Lasts~~~~~~~~

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[Guest guest]

Call blocking sounds wonderful, but I can't block out my entire family

even if it sounds heavenly!!

I really don't want to hurt people feelings and with my family that

would do it. Then I would have a whole 'nother set of problems!

Lyn

~~~~~~~~He Who Laughs,Lasts~~~~~~~~

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[Guest guest]

Angie I wasn't talking about you...really I had no idea you were even on

prednisone. And it certainly doesn't apply in your case if it makes you

sick! No offense????

Lyn

~~~~~~~~He Who Laughs,Lasts~~~~~~~~

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[Guest guest]

From: lyn55@... (Lyn Gottschalk)

Call blocking sounds wonderful, but I can't block out my entire family

even if it sounds heavenly!!

I really don't want to hurt people feelings and with my family that

would do it. Then I would have a whole 'nother set of problems!

Lyn

-------

Does everyone in your family intentionally block their numbers so that no

one with caller ID can see them? That is who is blocked out with the method

I use. Usually the folks that have something to hide, telemarketers come to

mind, block their number.

CUL,

Ruthie

===========================

Ruthie Cunliffe K2ZQ

ruthie@...

http://www.cunliffegroup.com/ruthie/

Oh, no! Not ANOTHER learning experience!

[Guest guest]

no offense taken Lyn I was just making a comment. I hate it but I need it so

what is a person to do. I am not a martyr in any way shape or form I have been

through enough already and look for relief. anyone that willingly suffers in

my book is a fool.

Angie