Pain medication

August 22, 1999

In a message dated 08/22/1999 7:40:01 PM Eastern Daylight Time,

DaniGran@... writes:

<<

I too have had problems with my Dr. giving me pain medication. He just

increased my dosage by one, but he added pred. twice a day. Makes me wonder

because my family has a HUGE history of diabetes. I also have high blood

pressure. I don't see why he doesn't just increase the pain medication. I

would rather be taking more of those pills than risking getting diabetes.

le

>>

Same here le...I have only consented to the Pred as a last resort. The

things I saw my mama go through with diabetes kept me from agreeing to the

Pred until now. My pain was unbearable around the clock so I finally had no

choice. I am given one pain pill a day...and it is not enough. It is

obvious to me that the dangerous side effects all these drugs are doing will

cause way more harm to me than an increase in pain meds...but since I am not

the doctor I have no choice. I am resentful at what is happening to me...I

have not lived my life in such a manner that I deserve this rationing of

relief. I don't know if the doctors are unsympathetic ..or afraid of the

powers that be..or just cannot rationally feel someone elses pain so they

negate it. In any event...I took the Pred and my blood sugar has already

begun the rise...what a price I am paying just so I can say I don't take more

than one pain pill a day.

I saw the same thing 2 years ago when my mama was dying of liver

cancer...they were STRICT about giving her Demerol only after the allotted 4

hours had passed no matter how much she cried...I lost faith in the system

then and I have not been disappointed in their continuing anemic attitude

toward treating acute chronic pain.

It seems if you have lived a responsible, ethical, life you are still thrown

in with the ones that haven't when it comes to the dispensation of

drugs...now unfortunate.

Annette

August 23, 1999

> It seems if you have lived a responsible, ethical, life you are still

> thrown

> in with the ones that haven't when it comes to the dispensation of

> drugs...now unfortunate.

Annette,

Right!! It seems to me it's easier to get the darn drugs on the street

then to get pain pills from the Dr. And when we every every right and reason

to take them. That really is upsetting about your mom being doled out pain

med when dying of liver cancer. Good greif. Why not let her be comfortable?

That would make me lose faith too.

Vicki

September 30, 2001

Tonya..Tabithas dr. does prescribe her tylenol w/codeine #3 for when the

pain is real bad..but she is 16. I know alot of doctors don't like

prescribing that because it is addicting and plus can cause constipation.

Have you tried regular tylenol..i wish i knew what to tell you..i feel bad

for Terah.

take care and good luck

karen(tabitha 16..poly)

From: tonyal@...

Reply-

Subject: pain medication

Date: Sun, 30 Sep 2001 19:30:43 -0000

My daughter Terah 5 systemic JRA has been having severe

pain mostly in her fingers and arms, especially at night. One evening

the pain she was having was so severe she cried all night. I tried

everything we gave her warm baths, heating pads, motrin but nothing

worked until I finally gave her tylenol with codine that was left

over from her IV port surgery. We finally got to sleep around 5am and

she slept for 4 hours. I asked her rheumy about prescribing her some

pain medication for times of severe pain but she refused. She would

rather up her steroid dose, which has already made her gain 25 pds.

Does any ones child take anything for pain or can anyone suggest

anything that might relieve severe pain.

Thank you

Tonya

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October 1, 2001

Tonya,

Our rheumy also will not give any pain medication and we, too, have used "left over" medication. The dr says he "rather her (my daughter) feel the pain so that she will know her limitations rather than to give her something and over-do things".

In a way I agree but on the other hand I don't. What I have found to do is call our peditrician (not the rheum.) and tell him the pain that she is in. He's very good about keeping her comfortable.

It works for us-hopefully, you'll have the same luck.

Best Wishes,

October 1, 2001

I'm not at all sure how it is with a lot of doctors, but the rheum. that we have is a professor at a college. He's a very "conservative" doctor and is one that tends to gear away as much as possible from medications due to their side effects.

Rather, he prefers us to do things without medications and is it only then if the pain is still uncontrollable do we give her something stronger. Yes, I've discussed this with her Ped. and he does agree with the Ped. Rheum. but he also see's first-handed the pain that she endures.

What's so ironic, is she rather be in pain than to take medicines. It's nothing for her to "rest" or take a "hot bath". As hard as it is, I have to let her make decisions (and she's only 7 1/2) within reason that is.

For now, all we can do is pray and hope that this horrible disease will be a thing of the past.

Sincerely,

October 1, 2001

,

What??? I am afraid that I would be looking for another Doctor if I had one

that would suggest that my child feel the pain to know his limitations! I am

incensed! I have seen Rob respond to his limitations when in pain - and as

parents who have well schooled ourselves on the affects of all medications to

the point that I am not likely to give Rob pain med unless he is having a really

bad day. I wonder how long that Doctor would go without pain medication if he

were the one suffering. I'm glad you have a pediatrician who has a clearer

understanding. Sorry if I have butted in where I shouldn't - I just can't

imagine my reaction if Rob's rheumy suggested such a thing.

Val

Rob's Mom

In a message dated Mon, 1 Oct 2001 12:23:32 PM Eastern Daylight Time,

KAmitchemalways@... writes:

> Tonya,

>

> Our rheumy also will not give any pain medication and we, too, have used " left

over " medication. The dr says he " rather her (my daughter) feel the pain so that

she will know her limitations rather than to give her something and over-do

things " .

>

> In a way I agree but on the other hand I don't. What I have found to do is

call our peditrician (not the rheum.) and tell him the pain that she is in. He's

very good about keeping her comfortable.

>

> It works for us-hopefully, you'll have the same luck.

>

> Best Wishes,

>

>

>

October 1, 2001

,

Here I am again butting in where I probably shouldn't - and Rob and I are still

fairly new at dealing with this - but it is my understanding that the pain is a

clear indicator of inflammation - and the inflammation - or the immune system's

over - response that is attacking their joints and bones will not only cause the

pain they are having - but can also cause permanent damage to the joints.

Teaching a child to accept the limitations and deal with the disease and not

fight the possible outcome saddens me. I would not for one minute sit back and

deal with the horrible side affects that my little guy is coping with were it

not with the understanding that not only are we preventing the pain that had him

immobile on the couch for days, but we are also combating the possibility of

permanent damage to these still forming and growing joints. No, I don't give

Rob medication for pain often - his high steriod dose limits his need for it.

And yes, I do try warm baths, etc to see if that will resolve his stiffness a

nd pain. I am not crazy about medications or their side affects and each of us

as parents need to make choices for our children, and I am all for allowing

children to take part in the decision making process - though I think most

children, especially young ones don't like taking medication - and I think it

will be a long time before Rob will be able to make those choices.

I hope I haven't offended you, you have to trust your instincts and what you see

in your child and make the decision right for your family - and i respect that.

But I still think I would get a second opinion with another rheumatologist.

Sincerely,

Val

Rob's Mom (3, systemic)

In a message dated Mon, 1 Oct 2001 12:55:55 PM Eastern Daylight Time,

KAmitchemalways@... writes:

> I'm not at all sure how it is with a lot of doctors, but the rheum. that we

have is a professor at a college. He's a very " conservative " doctor and is one

that tends to gear away as much as possible from medications due to their side

effects.

>

> Rather, he prefers us to do things without medications and is it only then if

the pain is still uncontrollable do we give her something stronger. Yes, I've

discussed this with her Ped. and he does agree with the Ped. Rheum. but he also

see's first-handed the pain that she endures.

>

> What's so ironic, is she rather be in pain than to take medicines. It's

nothing for her to " rest " or take a " hot bath " . As hard as it is, I have to let

her make decisions (and she's only 7 1/2) within reason that is.

>

> For now, all we can do is pray and hope that this horrible disease will be a

thing of the past.

>

> Sincerely,

>

>

>

October 1, 2001

You're not butting in. The rhuem. will be retiring soon therefore we will be getting another doctor to take his place. Being that we live in a small town, we have to drive for at least 5 hours to get to the ped. rheum..

Don't misunderstand me, I DO NOT let my daughter suffer nor would I sit back and let that happen. The doctor does control the pain/inflammation with MTX and Celebrex and that tends to help a lot. She also takes tylenol when she can't stand it any longer and SHE will ask for it.

She was a "premmie" baby so she has a prior history of problems. Personally, I don't care to add any more problems on.

As for letting her make her own decisions-it HAS to be that way-or for her it does. She has had to overcome, just as the rest of these children, many obstacles. She does not have the choice about taking her MTX or Celebrex, but anything else I will let her tell me. Trust me, she will ask (as the last resort-ha).

I think I will be getting a lot of heat from everyone, but as you said, we know what's best for our child. Yes, it tears my heart out to watch the disease take over and she wants nothing more than to be like her older brother and sister. They are never sick, never have to take medications and are able to carry on in the daily lives without any struggle. I know somehow-some way, I will see that day come for her and what a celebration that will be. Until then, we'll do the best that we can do.

October 1, 2001

All I can say is YIKES! Feel the pain? I think I would let my ped know that this is how this rhuemy feels. Doesn't make sense to me. My drs have all said the goal here is to get my son pain free. I even asked the rhuemy at one point if it is realistic to hope and work toward him being pain free and she said absolutely! I really would challenge my dr on this if I were you. When my son was still having pain even after being prescribed Celebrex, thats when we added Sulfasalazine to his meds. The rhuemy said there are many meds out there to try. Thats why all of the kids here take so many different ones. What works for one may not for another. It makes me mad that the dr said to leave that child in pain. Michele

-----Original Message-----From: KAmitchemalways@... [mailto:KAmitchemalways@...]Sent: Monday, October 01, 2001 11:21 AM Subject: Re: pain medicationTonya, Our rheumy also will not give any pain medication and we, too, have used "left over" medication. The dr says he "rather her (my daughter) feel the pain so that she will know her limitations rather than to give her something and over-do things". In a way I agree but on the other hand I don't. What I have found to do is call our peditrician (not the rheum.) and tell him the pain that she is in. He's very good about keeping her comfortable. It works for us-hopefully, you'll have the same luck. Best Wishes, For links to websites about arthritis and JRA, visit: http://www.geocities.com/Heartland/Village/8414/Links.html

October 1, 2001

Must say that I agree with all you have said here. Michele (Chris' mom)

Re: pain medication

,

Here I am again butting in where I probably shouldn't - and Rob and I are

still fairly new at dealing with this - but it is my understanding that the

pain is a clear indicator of inflammation - and the inflammation - or the

immune system's over - response that is attacking their joints and bones

will not only cause the pain they are having - but can also cause permanent

damage to the joints. Teaching a child to accept the limitations and deal

with the disease and not fight the possible outcome saddens me. I would not

for one minute sit back and deal with the horrible side affects that my

little guy is coping with were it not with the understanding that not only

are we preventing the pain that had him immobile on the couch for days, but

we are also combating the possibility of permanent damage to these still

forming and growing joints. No, I don't give Rob medication for pain often

- his high steriod dose limits his need for it. And yes, I do try warm

baths, etc to see if that will resolve his stiffness a

nd pain. I am not crazy about medications or their side affects and each of

us as parents need to make choices for our children, and I am all for

allowing children to take part in the decision making process - though I

think most children, especially young ones don't like taking medication -

and I think it will be a long time before Rob will be able to make those

choices.

I hope I haven't offended you, you have to trust your instincts and what you

see in your child and make the decision right for your family - and i

respect that. But I still think I would get a second opinion with another

rheumatologist.

Sincerely,

Val

Rob's Mom (3, systemic)

In a message dated Mon, 1 Oct 2001 12:55:55 PM Eastern Daylight Time,

KAmitchemalways@... writes:

> I'm not at all sure how it is with a lot of doctors, but the rheum. that

we have is a professor at a college. He's a very " conservative " doctor and

is one that tends to gear away as much as possible from medications due to

their side effects.

>

> Rather, he prefers us to do things without medications and is it only then

if the pain is still uncontrollable do we give her something stronger. Yes,

I've discussed this with her Ped. and he does agree with the Ped. Rheum. but

he also see's first-handed the pain that she endures.

>

> What's so ironic, is she rather be in pain than to take medicines. It's

nothing for her to " rest " or take a " hot bath " . As hard as it is, I have to

let her make decisions (and she's only 7 1/2) within reason that is.

>

> For now, all we can do is pray and hope that this horrible disease will be

a thing of the past.

>

> Sincerely,

>

>

>

October 2, 2001

Not on a regular basis, Tonya. 's regular meds pretty well control

his arthritis pain. When they used to not, we did go the route of

raising the dose of prednisone and then tapering and raising again. We

also added another DMARD along the way. It finally all seemed to balance

out for him.

There was only one time when he needed extra pain medicine, when he got

hurt and his ribs were causing, I'd guess, excruciating pain. We went to

the emergency room and they gave us some codeine for him to take. That

helped lots.

I do understand your dilemma though. used to be very short, very

overweight, and walked like a little old man. It was mostly temporary.

We can look back at pictures now and smile about it but it was very hard

when we were going through it. Not just for Josh but for me, too. He's

still small but lost the extra steroid weight as he was able to

decrease. Very gradually. Some of the clothes he wears now, that appear

loose, were very tight in the past. He got very bloated on high doses

but at least he was able to move around and not be in a lot of pain.

Take care,

Georgina

tonyal@... wrote:

>

> My daughter Terah 5 systemic JRA has been having severe

> pain mostly in her fingers and arms, especially at night. One evening

> the pain she was having was so severe she cried all night. I tried

> everything we gave her warm baths, heating pads, motrin but nothing

> worked until I finally gave her tylenol with codine that was left

> over from her IV port surgery. We finally got to sleep around 5am and

> she slept for 4 hours. I asked her rheumy about prescribing her some

> pain medication for times of severe pain but she refused. She would

> rather up her steroid dose, which has already made her gain 25 pds.

> Does any ones child take anything for pain or can anyone suggest

> anything that might relieve severe pain.

>

> Thank you

> Tonya

October 2, 2001

Hi,

This is a very interesting thread. And I'm back again, with more input.

I guess it all depends on who you see or talk to. Everyone has an

opinion. Our pediatrician, at our followup the ER told us to schedule,

warned me about taking the codeine that the ER doctors (who I

guess may not treat as many children as adults?) prescribed for his rib

pain. He said it was extremely important not to go over and above what

the rheumatologist regularly prescribed for Josh's arthritis treatment,

since he (having chronic pain) would be more likely to develop an

addiction to pain relievers than someone who doesn't have a chronic pain

condition.

It's been a while so I don't remember his exact comments about it but he

said something or other about his brain being wired differently and

having a different pain threshold because of his JRA and to give him

anything that might be habit forming might be too dangerous. Josh didn't

use the whole bottle of codeine we were given. He didn't even take it as

often as the label said he could. Just enough to keep him comfortable

while it hurt when he was trying to breathe and function regularly. It

wasn't refillable. If the pain had continued we would have seen the

doctor again but still, he wasn't happy about them giving us, what? A

narcotic? He said Josh may be dealing with pain for a very long time,

more pain than someone without arthritis, and it takes more and more of

the same drug to relieve the same amount of pain, or different drugs

when it no longer works to relieve the pain. It wasn't a great big issue

for us at the time because the pain was from an injury. While playing,

Josh and his sister ran straight into one another. She didn't get hurt

but he got winded and hurt his ribs. Didn't break them supposedly but

bruised them. It wasn't like he was going to be taking it for his

regular pain.

Well, that's our experience.

Take Care,

Georgina

> " Tepper, Michele " wrote:

>

> All I can say is YIKES! Feel the pain? I think I would let my ped know

> that this is how this rhuemy feels. Doesn't make sense to me. My drs

> have all said the goal here is to get my son pain free. I even asked

> the rhuemy at one point if it is realistic to hope and work toward him

> being pain free and she said absolutely! I really would challenge my

> dr on this if I were you. When my son was still having pain even after

> being prescribed Celebrex, thats when we added Sulfasalazine to his

> meds. The rhuemy said there are many meds out there to try. Thats why

> all of the kids here take so many different ones. What works for

> one may not for another. It makes me mad that the dr said to leave

> that child in pain. Michele

>

> -----Original Message-----

> From: KAmitchemalways@...

> Tonya,

> Our rheumy also will not give any pain medication and we,

> too, have used " left over " medication. The dr says he

> " rather her (my daughter) feel the pain so that she will

> know her limitations rather than to give her something and

> over-do things " .

> In a way I agree but on the other hand I don't. What I have

> found to do is call our peditrician (not the rheum.) and

> tell him the pain that she is in. He's very good about

> keeping her comfortable.

> It works for us-hopefully, you'll have the same luck.

> Best Wishes,

>

October 3, 2001

Hello..me again..lol

Well Tabitha only uses her tylenol w/codeine when her pain is extreme but

she hasn't needed it in months.. She is pretty good at judging when she

needs it. She knows now when it is just old arthur picking on her but alot

of time she has muscle spasms..she doesn't do well with muscle

relaxers..makes her belly nauseous(SP). So she just takes one of the

tylenols and it works.

Naporsyn works pretty good for her when it comes to her arthur pain

mostly..so she takes it 3 times a day.

Pain wise..she doesn't complain alot..sometimes i think maybe it is in

remission but then i look at her joints and i know that it isn't. I guess

she is just use to the pain..

I always wish she would go into remission but so far she hasn't. With the

poly i don't think it is a very high successful rate. Her arthritis has

taken a toll on her body though..She has little bitty arms doesn't have even

enough strength in her hands to squeeze a clothes pin..it has really made

her joints in her fingers go bad. But she still loves to write and type. Her

arms is what i am worried about..she can't stretch them out like she use

to..but as always..our kids learn to accomodate their lives and every day

routines to their limitations. God Bless them all!

:- )

P.S. sorry for rambling but i am going through this sad thing with Tabitha

and just needed to get it off my chest.

From: Georgina <gmckin@...>

Reply-

Subject: Re: pain medication

Date: Tue, 02 Oct 2001 17:35:11 -1000