RE: Pain Management. Seeking recommendations.

[Guest guest]

I am on morphine and will let you know that I do feel tired the minute I

sit down, but so long as I'm busy I'm fine. I know what you're dealing with,

as I had the same experience with the Fentanyl Patches. Anything opiate

based is going to make you feel more tired, you just have to see if you can

overcome that feeling or lower your dose. That's the hard part, as a lower

dose usually will make you suffer more pain, so you're sort of in a catch

22.

My body is so screwed up that I can't sleep most nights, but once 5:00 AM

rolls around I can sleep un-interrupted for 8-9 hours! I also know for a

fact that cold, cool & damp or wet weather kills me, and I feel as good as

I'm going to in the summer when it is hot, at least 85 or better. Even in

the summer rain or " off " days where it is dreary & cool hurt me.

Hope this gives you some insight. Kirk.

2008/5/20 Darv :

> Since I was diagnosed with Still's I have been taking Norco to control

> pain.

> The obvious problem was that this is a short term pain killer (less than 4

> hours). I started to flare again this year during my usual time but the

> pain was much worse. Especially in the AM. It was taking me close to 2

> to 3 hours before I could loosen up enough to get ready for work. As long

> as I kept mobile, I was ok. Meetings and long sit times were quite

> painful. I needed something more.

>

> After some consideration, I opted for Fentanyl patches in part to protect

> my

> stomach. I am taking 25ug/h and it's working fairly well thus far but I do

> get a lot of fatigue and some drugged feeling. I am wondering if there is

> anyone here taking Fentanyl and if so, do the side effects get better?

>

> Does anyone recommend other medications over Fentanyl (this would mean you

> would have tried Fentanyl)?

>

> Thanks

>

> Darv

>

>

[Guest guest]

I tried Morphine and at first it was great. I didn't get the high feeling

that I got from the Norco and the pain was totally gone. I even had quite

a bit of energy. Problem was that three days later I had bloated up like

a balloon that was on the verge of popping. I had to go to the ER where

they pumped me full of strong pain killers, laxatives, and a good two shots

of Ativan. I wanted to try the morphine again but they pushed me towards

methadone. The one person I trust suggested the patch as it was easier on

the stomach, liver and lasted a full three days.

I found out today that the third day isn't covered quite as well as the

other two.

I think it will take me a while to get used to the patches. I will give it

couple of weeks. Hopefully I will come around. They have significantly

lowered my pain and I am on a relatively low dose. If the disorientation

and fatigue continue, I will have to stop and perhaps try the methadone.

This for someone that swore they'd never ever do drugs.

Sigh.

Thanks for replying.

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of Kirk Bonanny

Sent: Monday, May 19, 2008 11:37 PM

To: Stillsdisease

Subject: Re: Pain Management. Seeking recommendations.

I am on morphine and will let you know that I do feel tired the minute I

sit down, but so long as I'm busy I'm fine. I know what you're dealing with,

as I had the same experience with the Fentanyl Patches. Anything opiate

based is going to make you feel more tired, you just have to see if you can

overcome that feeling or lower your dose. That's the hard part, as a lower

dose usually will make you suffer more pain, so you're sort of in a catch

22.

My body is so screwed up that I can't sleep most nights, but once 5:00 AM

rolls around I can sleep un-interrupted for 8-9 hours! I also know for a

fact that cold, cool & damp or wet weather kills me, and I feel as good as

I'm going to in the summer when it is hot, at least 85 or better. Even in

the summer rain or " off " days where it is dreary & cool hurt me.

Hope this gives you some insight. Kirk.

2008/5/20 Darv <darvin@... <mailto:darvin%40comcast.net> >:

[Guest guest]

Darv, I've never experienced a " high " feeling from morphine, but have from

dilaudid....but I may have not described the morphine pump well enough. The

pump is implanted in my abdomen, totally inaccessible to me, and only

accessible by the Dr's with the electronic device that controls it. The

morphine does not go into my bloodstream, instead it goes into a catheter

that was inserted into the base of my spine. The only pain it controls is

the spinal pain, nothing else. Outside of that I have OxyContin but try to

only use it when the pain becomes really unbearable as it not only causes

constipation (which can be so bad one wants to die rather than go to the

bathroom..(I can add more, but won't for fear of offending a few

people...just " think " like I do and you'll get it)) and it also causes my to

be rather irritable and " shortens my fuse " .

Nothing outside of dilaudid will take out the headaches, and you aren't

going to see that stuff outside of a " resort " too often...so I tend to

suffer through them most of the time. Either that or smash ice packs off of

my head until I'm damn near knocked unconscious!

Just wanted to add this, Kirk.

2008/5/21 Darv :

> I tried Morphine and at first it was great. I didn't get the high

> feeling

> that I got from the Norco and the pain was totally gone. I even had quite

> a bit of energy. Problem was that three days later I had bloated up like

> a balloon that was on the verge of popping. I had to go to the ER where

> they pumped me full of strong pain killers, laxatives, and a good two shots

> of Ativan. I wanted to try the morphine again but they pushed me towards

> methadone. The one person I trust suggested the patch as it was easier on

> the stomach, liver and lasted a full three days.

>

> I found out today that the third day isn't covered quite as well as the

> other two.

>

> I think it will take me a while to get used to the patches. I will give it

> couple of weeks. Hopefully I will come around. They have significantly

> lowered my pain and I am on a relatively low dose. If the disorientation

> and fatigue continue, I will have to stop and perhaps try the methadone.

> This for someone that swore they'd never ever do drugs.

>

> Sigh.

>

> Thanks for replying.

>

> From: Stillsdisease <Stillsdisease%40yahoogroups.com>[mailto:

> Stillsdisease <Stillsdisease%40yahoogroups.com>]

> On Behalf Of Kirk Bonanny

> Sent: Monday, May 19, 2008 11:37 PM

> To: Stillsdisease <Stillsdisease%40yahoogroups.com>

> Subject: Re: Pain Management. Seeking recommendations.

>

> I am on morphine and will let you know that I do feel tired the minute I

> sit down, but so long as I'm busy I'm fine. I know what you're dealing

> with,

> as I had the same experience with the Fentanyl Patches. Anything opiate

> based is going to make you feel more tired, you just have to see if you can

> overcome that feeling or lower your dose. That's the hard part, as a lower

> dose usually will make you suffer more pain, so you're sort of in a catch

> 22.

> My body is so screwed up that I can't sleep most nights, but once 5:00 AM

> rolls around I can sleep un-interrupted for 8-9 hours! I also know for a

> fact that cold, cool & damp or wet weather kills me, and I feel as good as

> I'm going to in the summer when it is hot, at least 85 or better. Even in

> the summer rain or " off " days where it is dreary & cool hurt me.

> Hope this gives you some insight. Kirk.

>

> 2008/5/20 Darv <darvin@... <darvin%40comcast.net> <mailto:

> darvin%40comcast.net <darvin%2540comcast.net>> >:

>

>

[Guest guest]

I've been given Dilaudid two or three times. I felt like I was on some

strange yo-yo ride. One second awake, the next asleep, then awake. Over

and over for hours. I now refuse the stuff and demand they use Demerol

when I am hospitalized. Dr's resist until I tell them how horrible the

Dilaudid makes me feel and how little rest I get. Fortunately I don't have

access to Demerol because it works too damn good for me.

I am getting better with the Fentanyl now that I am on my second patch. It

did leave some irritation on my skin but no biggie. It makes me a bit

tired but that seems to be passing with longer I am on it. The biggest

drawback is that it makes me sweat quite a bit. But at least the pain is

for the first time in a long time, manageable.

Thus far, nothing has clogged me up like the morphine did. That was the

most painful stomach problem I ever had. The pain was so bad I was about

to pass out.

Thanks again for the feedback.

Darv

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of Kirk Bonanny

Sent: Wednesday, May 21, 2008 4:11 PM

To: Stillsdisease

Subject: Re: Pain Management. Seeking recommendations.

Darv, I've never experienced a " high " feeling from morphine, but have from

dilaudid....but I may have not described the morphine pump well enough. The

pump is implanted in my abdomen, totally inaccessible to me, and only

accessible by the Dr's with the electronic device that controls it. The

morphine does not go into my bloodstream, instead it goes into a catheter

that was inserted into the base of my spine. The only pain it controls is

the spinal pain, nothing else. Outside of that I have OxyContin but try to

only use it when the pain becomes really unbearable as it not only causes

constipation (which can be so bad one wants to die rather than go to the

bathroom..(I can add more, but won't for fear of offending a few

people...just " think " like I do and you'll get it)) and it also causes my to

be rather irritable and " shortens my fuse " .

Nothing outside of dilaudid will take out the headaches, and you aren't

going to see that stuff outside of a " resort " too often...so I tend to

suffer through them most of the time. Either that or smash ice packs off of

my head until I'm damn near knocked unconscious!

Just wanted to add this, Kirk.

[Guest guest]

Darv,

I am the same way on Dilaudid. When i was in teh hospital in the fall

for kidney stones, they gave me Demerol at first, which worked great,

just needed it more often than they would like. So they gave me

Dialudid right before shift change. The poor nurse that came on with

me. She pretty much had to stay in my room teh whole time. I was

wretching and super, super, super, super sweaty. They had the air on

60 and they had me laying on a bunch of ice packs. THis went on for

about 8 hours and finally I was back to normal. It was horrible and i

will never take Dilaudid again. Definitely Demerol all the way.

Houston, Texas

[Guest guest]

Wow....while I have felt " light headed " initially when receiving dilaudid,

I have never felt as you describe, and I'm on a high dose when I'm on it

(4mg/every 3 hrs)... One thing I found out is that I can think incredibly

" clearly " when on it, which strikes me as odd. One example is that I love to

play Chess with a few of my friends, and one of my friends is incredibly

good, a few hundred points better than me...yet while in the resort he

couldn't touch me and I was able to literally " SEE " the board like I never

was able to do before or when I'm not in the resort. I though maybe I

miraculously improved overnight but was shut down when I played him a week

later at home.......the next time I was in, smoked him but good again.

Go figure. Kirk

2008/5/22 Darv :

> I've been given Dilaudid two or three times. I felt like I was on some

> strange yo-yo ride. One second awake, the next asleep, then awake. Over

> and over for hours. I now refuse the stuff and demand they use Demerol

> when I am hospitalized. Dr's resist until I tell them how horrible the

> Dilaudid makes me feel and how little rest I get. Fortunately I don't have

> access to Demerol because it works too damn good for me.

>

> I am getting better with the Fentanyl now that I am on my second patch. It

> did leave some irritation on my skin but no biggie. It makes me a bit

> tired but that seems to be passing with longer I am on it. The biggest

> drawback is that it makes me sweat quite a bit. But at least the pain is

> for the first time in a long time, manageable.

>

> Thus far, nothing has clogged me up like the morphine did. That was the

> most painful stomach problem I ever had. The pain was so bad I was about

> to pass out.

>

> Thanks again for the feedback.

>

> Darv

>

> From: Stillsdisease <Stillsdisease%40yahoogroups.com>[mailto:

> Stillsdisease <Stillsdisease%40yahoogroups.com>]

> On Behalf Of Kirk Bonanny

> Sent: Wednesday, May 21, 2008 4:11 PM

> To: Stillsdisease <Stillsdisease%40yahoogroups.com>

> Subject: Re: Pain Management. Seeking recommendations.

>

> Darv, I've never experienced a " high " feeling from morphine, but have from

> dilaudid....but I may have not described the morphine pump well enough. The

> pump is implanted in my abdomen, totally inaccessible to me, and only

> accessible by the Dr's with the electronic device that controls it. The

> morphine does not go into my bloodstream, instead it goes into a catheter

> that was inserted into the base of my spine. The only pain it controls is

> the spinal pain, nothing else. Outside of that I have OxyContin but try to

> only use it when the pain becomes really unbearable as it not only causes

> constipation (which can be so bad one wants to die rather than go to the

> bathroom..(I can add more, but won't for fear of offending a few

> people...just " think " like I do and you'll get it)) and it also causes my

> to

> be rather irritable and " shortens my fuse " .

> Nothing outside of dilaudid will take out the headaches, and you aren't

> going to see that stuff outside of a " resort " too often...so I tend to

> suffer through them most of the time. Either that or smash ice packs off of

> my head until I'm damn near knocked unconscious!

> Just wanted to add this, Kirk.

>

>

[Guest guest]

Hi Kirk

I smiled when I read how you see the chess board so clearly. If dilaudid

did produce this effect I could do with some as my husband and I play a game

called Up word and it doesn't matter how hard I try I don't win very often.

I would love to play and wipe the board with him. I think it is a bit over

the top for me to go to the hospital to prove a point tho don't you.

Hope life is not too bad at the moment.

Best wishes

Joan U.K.