All over body pain/ Shayna

[Guest guest]

Hi Shayna,

Can you please tell me what side effects from the Fentanyl outweighed

the amount of pain relief you were receiving? And how many years were you on

Fentanyl? How much Fentanyl were you on?

Thanks!!

Hugs,

Ann-Marie

shaynapearl wrote:

Pain has always been my worst symptom. I, too, have pain all over my

body. I was on fentanyl for several years (it's a cousin of oxycontin;

they are both morphine derivatives). After awhile, I felt that the

side effects outweighed the amount of help I was getting from it. (I

know everyone gets different side effects and different amounts of

pain relief). I still have hydrocodone and morphine on hand to get me

through particularly bad days or days when I want to do more than I

usually can (like go to a wedding or something). But generally, I've

[Guest guest]

Hi Ann-Marie,

I was on fentanyl for about 2 years. It's hard to remember the dose

for sure, but I think my maximum was a 200mcg patch.

Before I started the fentanyl, I was almost totally bedridden and in

extremely intense pain. I was in too much pain to do much of anything,

but the more I stayed in bed, the more I atrophied and the less I

could do. Also, my body was so sensitive that even the contact of my

body on the bed made the pain worse. So it was a downward cycle.

At first, the fentanyl decreased the pain enough that I could start

getting out of bed more. It allowed me to begin physical and

occupational therapy. I gradually built up muscle and that helped me

stay out of bed even longer. This broke the downward cycle. So

fentanyl was a blessing at first.

However, once I was able to function more, the side effects of

fentanyl started to interfere with further improvement. The side

effects that troubled me most were: decreased lung capacity, increased

mental fogginess (which decreased my ability to work and to write).

Also, I slept 12 or more hours/day on fentanyl, including naps, and I

wanted to be awake and functioning more of the time.

Interestingly, when I got off fentanyl, the side effects went away

but my pain level did not increase. Somehow I maintained the gains

that fentanyl had helped me achieve.

That's my long answer!!!

Hugs,

Shayna

>

> Pain has always been my worst symptom. I, too, have pain all over my

> body. I was on fentanyl for several years (it's a cousin of oxycontin;

> they are both morphine derivatives). After awhile, I felt that the

> side effects outweighed the amount of help I was getting from it. (I

> know everyone gets different side effects and different amounts of

> pain relief). I still have hydrocodone and morphine on hand to get me

> through particularly bad days or days when I want to do more than I

> usually can (like go to a wedding or something). But generally, I've

>

>

>

[Guest guest]

Shayna,

I am having a problem with my pain at the moment and have started taking

Pregablin (Lyrica) 6 weeks ago.

I saw my pain management Dr yesterday and he wants to double my dose to

6oomg a day.

My major problem with this disease is the amount of pain I have especially

in the legs. I have in the past tried Neurontin with no success. The

problem with trying all sorts of things like these is that my major side

effect is usually massive brain fogginess (off with the pixies).

He did say if that we had no success with the Lyrica we have some other

avenues we could go down.

They say I now have a diagnisis of Chronic Pain Syndrome as well as Mito,

they need to help that first. I had a brain MRI yesterday also to check for

seizure activity, if normal at least we have the test on file for future

reference to.

I have never tried the opiates before so I suppose they could be next?

Hugs

Wanda

>

>Reply-To:

>To:

>Subject: Re: All over body pain/ Shayna

>Date: Sun, 23 Apr 2006 18:33:30 -0000

>

>Hi Ann-Marie,

>I was on fentanyl for about 2 years. It's hard to remember the dose

>for sure, but I think my maximum was a 200mcg patch.

>

>Before I started the fentanyl, I was almost totally bedridden and in

>extremely intense pain. I was in too much pain to do much of anything,

>but the more I stayed in bed, the more I atrophied and the less I

>could do. Also, my body was so sensitive that even the contact of my

>body on the bed made the pain worse. So it was a downward cycle.

>

>At first, the fentanyl decreased the pain enough that I could start

>getting out of bed more. It allowed me to begin physical and

>occupational therapy. I gradually built up muscle and that helped me

>stay out of bed even longer. This broke the downward cycle. So

>fentanyl was a blessing at first.

>

>However, once I was able to function more, the side effects of

>fentanyl started to interfere with further improvement. The side

>effects that troubled me most were: decreased lung capacity, increased

>mental fogginess (which decreased my ability to work and to write).

>Also, I slept 12 or more hours/day on fentanyl, including naps, and I

>wanted to be awake and functioning more of the time.

>

>Interestingly, when I got off fentanyl, the side effects went away

>but my pain level did not increase. Somehow I maintained the gains

>that fentanyl had helped me achieve.

>

>That's my long answer!!!

>

>Hugs,

>Shayna

>

> >

> > Pain has always been my worst symptom. I, too, have pain all over my

> > body. I was on fentanyl for several years (it's a cousin of oxycontin;

> > they are both morphine derivatives). After awhile, I felt that the

> > side effects outweighed the amount of help I was getting from it. (I

> > know everyone gets different side effects and different amounts of

> > pain relief). I still have hydrocodone and morphine on hand to get me

> > through particularly bad days or days when I want to do more than I

> > usually can (like go to a wedding or something). But generally, I've

> >

> >

> >

[Guest guest]

I too suffer from severe pain all over the body. If I

use the muscles, I hurt. I have taking Neurontin, but

no luck. I did find though when my lactose was high,

so was the pain.

--- wanda ramsdell jordyalan@...> wrote:

> Shayna,

>

> I am having a problem with my pain at the moment and

> have started taking

> Pregablin (Lyrica) 6 weeks ago.

> I saw my pain management Dr yesterday and he wants

> to double my dose to

> 6oomg a day.

> My major problem with this disease is the amount of

> pain I have especially

> in the legs. I have in the past tried Neurontin with

> no success. The

> problem with trying all sorts of things like these

> is that my major side

> effect is usually massive brain fogginess (off with

> the pixies).

> He did say if that we had no success with the Lyrica

> we have some other

> avenues we could go down.

> They say I now have a diagnisis of Chronic Pain

> Syndrome as well as Mito,

> they need to help that first. I had a brain MRI

> yesterday also to check for

> seizure activity, if normal at least we have the

> test on file for future

> reference to.

> I have never tried the opiates before so I suppose

> they could be next?

>

> Hugs

> Wanda

>

>

>

> >

> >Reply-To:

> >To:

> >Subject: Re: All over body pain/ Shayna

> >Date: Sun, 23 Apr 2006 18:33:30 -0000

> >

> >Hi Ann-Marie,

> >I was on fentanyl for about 2 years. It's hard to

> remember the dose

> >for sure, but I think my maximum was a 200mcg

> patch.

> >

> >Before I started the fentanyl, I was almost totally

> bedridden and in

> >extremely intense pain. I was in too much pain to

> do much of anything,

> >but the more I stayed in bed, the more I atrophied

> and the less I

> >could do. Also, my body was so sensitive that even

> the contact of my

> >body on the bed made the pain worse. So it was a

> downward cycle.

> >

> >At first, the fentanyl decreased the pain enough

> that I could start

> >getting out of bed more. It allowed me to begin

> physical and

> >occupational therapy. I gradually built up muscle

> and that helped me

> >stay out of bed even longer. This broke the

> downward cycle. So

> >fentanyl was a blessing at first.

> >

> >However, once I was able to function more, the side

> effects of

> >fentanyl started to interfere with further

> improvement. The side

> >effects that troubled me most were: decreased lung

> capacity, increased

> >mental fogginess (which decreased my ability to

> work and to write).

> >Also, I slept 12 or more hours/day on fentanyl,

> including naps, and I

> >wanted to be awake and functioning more of the

> time.

> >

> >Interestingly, when I got off fentanyl, the side

> effects went away

> >but my pain level did not increase. Somehow I

> maintained the gains

> >that fentanyl had helped me achieve.

> >

> >That's my long answer!!!

> >

> >Hugs,

> >Shayna

> >

> > >

> > > Pain has always been my worst symptom. I, too,

> have pain all over my

> > > body. I was on fentanyl for several years (it's

> a cousin of oxycontin;

> > > they are both morphine derivatives). After

> awhile, I felt that the

> > > side effects outweighed the amount of help I was

> getting from it. (I

> > > know everyone gets different side effects and

> different amounts of

> > > pain relief). I still have hydrocodone and

> morphine on hand to get me

> > > through particularly bad days or days when I

> want to do more than I

> > > usually can (like go to a wedding or something).

> But generally, I've

> > >

> > >

> > > [Non-text portions of this message have been

> removed]

> > >

> >

> >

> >

> >

>

>

_________________________________________________________________

> Like your next flight on us? Velocity NAB Credit

> Card

>

http://a.ninemsn.com.au/b.aspx?URL=http%3A%2F%2Fadsfac%2Enet%2Flink%2Easp%3Fcc%3\

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>

>

__________________________________________________

[Guest guest]

Thanks Irene for the reply

Wanda

>

>Reply-To:

>To:

>Subject: RE: Re: All over body pain/ Shayna

>Date: Mon, 24 Apr 2006 20:34:36 -0700 (PDT)

>

>I too suffer from severe pain all over the body. If I

>use the muscles, I hurt. I have taking Neurontin, but

>no luck. I did find though when my lactose was high,

>so was the pain.

>

>--- wanda ramsdell jordyalan@...> wrote:

>

> > Shayna,

> >

> > I am having a problem with my pain at the moment and

> > have started taking

> > Pregablin (Lyrica) 6 weeks ago.

> > I saw my pain management Dr yesterday and he wants

> > to double my dose to

> > 6oomg a day.

> > My major problem with this disease is the amount of

> > pain I have especially

> > in the legs. I have in the past tried Neurontin with

> > no success. The

> > problem with trying all sorts of things like these

> > is that my major side

> > effect is usually massive brain fogginess (off with

> > the pixies).

> > He did say if that we had no success with the Lyrica

> > we have some other

> > avenues we could go down.

> > They say I now have a diagnisis of Chronic Pain

> > Syndrome as well as Mito,

> > they need to help that first. I had a brain MRI

> > yesterday also to check for

> > seizure activity, if normal at least we have the

> > test on file for future

> > reference to.

> > I have never tried the opiates before so I suppose

> > they could be next?

> >

> > Hugs

> > Wanda

> >

> >

> >

> > >

> > >Reply-To:

> > >To:

> > >Subject: Re: All over body pain/ Shayna

> > >Date: Sun, 23 Apr 2006 18:33:30 -0000

> > >

> > >Hi Ann-Marie,

> > >I was on fentanyl for about 2 years. It's hard to

> > remember the dose

> > >for sure, but I think my maximum was a 200mcg

> > patch.

> > >

> > >Before I started the fentanyl, I was almost totally

> > bedridden and in

> > >extremely intense pain. I was in too much pain to

> > do much of anything,

> > >but the more I stayed in bed, the more I atrophied

> > and the less I

> > >could do. Also, my body was so sensitive that even

> > the contact of my

> > >body on the bed made the pain worse. So it was a

> > downward cycle.

> > >

> > >At first, the fentanyl decreased the pain enough

> > that I could start

> > >getting out of bed more. It allowed me to begin

> > physical and

> > >occupational therapy. I gradually built up muscle

> > and that helped me

> > >stay out of bed even longer. This broke the

> > downward cycle. So

> > >fentanyl was a blessing at first.

> > >

> > >However, once I was able to function more, the side

> > effects of

> > >fentanyl started to interfere with further

> > improvement. The side

> > >effects that troubled me most were: decreased lung

> > capacity, increased

> > >mental fogginess (which decreased my ability to

> > work and to write).

> > >Also, I slept 12 or more hours/day on fentanyl,

> > including naps, and I

> > >wanted to be awake and functioning more of the

> > time.

> > >

> > >Interestingly, when I got off fentanyl, the side

> > effects went away

> > >but my pain level did not increase. Somehow I

> > maintained the gains

> > >that fentanyl had helped me achieve.

> > >

> > >That's my long answer!!!

> > >

> > >Hugs,

> > >Shayna

> > >

> > > >

> > > > Pain has always been my worst symptom. I, too,

> > have pain all over my

> > > > body. I was on fentanyl for several years (it's

> > a cousin of oxycontin;

> > > > they are both morphine derivatives). After

> > awhile, I felt that the

> > > > side effects outweighed the amount of help I was

> > getting from it. (I

> > > > know everyone gets different side effects and

> > different amounts of

> > > > pain relief). I still have hydrocodone and

> > morphine on hand to get me

> > > > through particularly bad days or days when I

> > want to do more than I

> > > > usually can (like go to a wedding or something).

> > But generally, I've

> > > >

> > > >

> > > > [Non-text portions of this message have been

> > removed]

> > > >

> > >

> > >

> > >

> > >

> >

> >

>_________________________________________________________________

> > Like your next flight on us? Velocity NAB Credit

> > Card

> >

>http://a.ninemsn.com.au/b.aspx?URL=http%3A%2F%2Fadsfac%2Enet%2Flink%2Easp%3Fcc%\

3DNAT030%2E23080%2E0%26clk%3D1%26creativeID%3D34301&_t=754983092&_r=emailtagline\

&_m=EXT

> >

> >

>

>

>__________________________________________________

>

[Guest guest]

Hi Wanda,

I've never tried Lyrica. I'm not up on all the different meds and

techniques that have been developed in the past few years. It's

possibile they might recommend opiates, but I wouldn't be surprised if

they have other ideas before trying that. In any case, my experience

has been that everyone responds to different pain meds differently. I

think we each have to do a bit of trial and error.

In any case, I wish you the best of luck. I know the process can be

very frustrating. I would be very interested in updates on how it's

going and if you're finding anything that helps (or ruling out things

that don't help).

Hugs,

Shayna

> > >

> > > Pain has always been my worst symptom. I, too, have pain all over my

> > > body. I was on fentanyl for several years (it's a cousin of

oxycontin;

> > > they are both morphine derivatives). After awhile, I felt that the

> > > side effects outweighed the amount of help I was getting from it. (I

> > > know everyone gets different side effects and different amounts of

> > > pain relief). I still have hydrocodone and morphine on hand to

get me

> > > through particularly bad days or days when I want to do more than I

> > > usually can (like go to a wedding or something). But generally, I've

> > >

> > >

> > >