Re: Uncle! I gave in and took the oxycontin/Aase Marit

[Guest guest]

Hi again ,

This medication is first and foremost made for the treatment of

chronic pain. So when the doctor starts it, he should really be

prepared to prescribe it all the time. At least that is how I am

thinking about it... If he just wanted to give you something for an

" acute " problem right now (or in January), he should rather have

chosen something short acting, not OxyContin...

At least that is my opinion... Any of you others, what do you think??

Am I right???

Also , I also would like to say " Contratulations!!! " ... I also

thought it was so awful having to use medication, I wouldn't touch

the stuff... Finally my Rheumatologist talked me into it... Now I

know differently than I did back then. It is really not necessary

today to live with debilitating pain. It is really a waste of a life

that could be really good... Another way of thinking about it,

but.... I really think it is a valid point today. Today we do have

knowledge about modern treatment of chronic pain, and we have got

much better medications than just a few years back, with fewer side

effects etc. It is really no point in " toughing it out " anymore. I

think that many of the old ways of thinking about pain medication,

the ways that often provoke us, also are amongst the ones that makes

it so difficult for us to get to the point where we are willing to

take help... It is a huge step, but it is a step towards a better

life, IMHO...

I also recommend that you are a bit patient now when you are starting

it. Don't give up on the medication even if you experience some

adverse effects at first. You may feel a bit unwell, tired and maybe

even a bit drowsy at first. But it normally passes. You may also need

a higher dose than you have started with (I have no idea how much you

are trying out now), in order to get decent pain relief. So it may

take a while to get it right. For me it also felt really funny at

first when I started with a continuous release medication, I was

really not used to getting the effect that way, it felt weird... But

also such a relief after being on medication that only lasted 3 hours

for a long time... And then I was supposed to take three dosages a

day, so I got pain relief 9 hours out of 24 hours. Then you have to

wait and wait until you can't take it anymore, then take your

medication and " Phew... " for a little while, then back to square one.

It is really not a good way of living each day. That way OxyContin

and it's like are so much better for us with EDS...

Aase Marit

>Hi Aase,

>Thanks so much for your informative and kind letter. It will really help me

>advice wise and the proper way to take the Oxycontin.Plus the benefits, I'm

>so tired of hurting everywhere, I just gave in and took it today. I've had

>it since Jan. but hadn't touched the stuff yet. Will the Dr. give it to me

>all the time if it works or will they cut it off? Thanks again for your

>letter!

>Sincerely, S.

> Re: Uncle! I gave in and took the oxycontin

>

>

>> Hi ,

>>

>> I have been on OxyContin now for almost three years. I have really

>> experienced very little side effects. At first I did experience a bit

>> of nausea, itching and feeling tired, but it soon passed. It did not

>> last longer than maximum a month, I think. I do experience problems

>> with constipation from it now, but a stool softener makes a

>> difference. Also I do have some problems urinating, which I had way

>> before any medications that could cause it, but it seem to be a bit

>> worse on OC though.

>>

>> In my opinion the help I get from it in dealing with my chronic pain

>> far outweighs the side effects... But, there is one thing I really

>> think is important. That is to take it all the time. Not only when

>> things are unbearable. That is not the right use for this kind of

> > medication. If things get to that point, it also works way too slow.

>>

>> The reason for the need to take it all the time is most importantly

>> that what you need it to do, is to break the vicious circle of

>> chronic pain where the pain more or less accumulates and you just

>> can't get proper relief. Do you understand what I mean? The OC really

>> helps with that, and if you take it regularly, you need a much lower

>> dose and you won't be on that pain roller coaster anymore. It is a

>> totally different situation, one you really can't understand fully

>> until you have been on a continuous release medication for quite a

>> while and see what difference it makes in your all over pain- and

>> function level... And quality of life... Most people also have a

>> fast acting medication, e.g. Oxycodone immideate release, but I chose

>> not to go that route. Sometimes I really regret it, because when I

>> have my really bad days, it feels like nothing touches the pain at

>> all. But I am sure it would have been even worse without the OC. What

>> I do take on such days is Vioxx and/or Tylenol in addition to the OC.

>>

>> Good luck!!!

>>

>>

>> Aase Marit

>>

>> >Hi ALL,

>> >After spending all day yesterday in bed with my shoulder, spine,

>> >knees and hip hurting. The left deltoid the most. I finally gave in

>> >and took my first oxycontin. I know I wrote about a month ago about

>> >the OXY topic and you all gave me great advice. Being the nurse

>> >whimp I am about pills I never tried it until today. So what should

>> >I expact to feel side effect wise?

>>

>>

>>

>> To learn more about EDS, visit our website: http://www.ceda.ca

>>

>>

[Guest guest]

Aase,

You are " absolutely right " that it shouldn't be prescribed for the

short-term.

There are many other more appropriate pain medications for 'ACUTE' pain

injuries which cause short-term discomfort.

J:O)hn

> This medication is first and foremost made for the treatment of

> chronic pain. So when the doctor starts it, he should really be

> prepared to prescribe it all the time. At least that is how I am

> thinking about it... If he just wanted to give you something for an

> " acute " problem right now (or in January), he should rather have

> chosen something short acting, not OxyContin...

> At least that is my opinion... Any of you others, what do you think??

> Am I right???

[Guest guest]

Aase Marit,

I just found your second letter. What great info. Yes my Doc gave me the

oxycontin back in Jan to start with PT. He gave me Percocet post-op. And

like a fool I just kept with the Percocet, rather than switching to the

Oxycontin. I never kept up and took the Percocet around the clock, but was

always in pain, constant pain. I was just too afraid of the Oxy until today

when I said enough is enough. Take it. You are so right we deserve a better

quality of life through pain management. Thanks so much for your insight.

Sincerely, S.

Re: Uncle! I gave in and took the oxycontin

> >

> >

> >> Hi ,

> >>

> >> I have been on OxyContin now for almost three years. I have really

> >> experienced very little side effects. At first I did experience a bit

> >> of nausea, itching and feeling tired, but it soon passed. It did not

> >> last longer than maximum a month, I think. I do experience problems

> >> with constipation from it now, but a stool softener makes a

> >> difference. Also I do have some problems urinating, which I had way

> >> before any medications that could cause it, but it seem to be a bit

> >> worse on OC though.

> >>

> >> In my opinion the help I get from it in dealing with my chronic pain

> >> far outweighs the side effects... But, there is one thing I really

> >> think is important. That is to take it all the time. Not only when

> >> things are unbearable. That is not the right use for this kind of

> > > medication. If things get to that point, it also works way too slow.

> >>

> >> The reason for the need to take it all the time is most importantly

> >> that what you need it to do, is to break the vicious circle of

> >> chronic pain where the pain more or less accumulates and you just

> >> can't get proper relief. Do you understand what I mean? The OC really

> >> helps with that, and if you take it regularly, you need a much lower

> >> dose and you won't be on that pain roller coaster anymore. It is a

> >> totally different situation, one you really can't understand fully

> >> until you have been on a continuous release medication for quite a

> >> while and see what difference it makes in your all over pain- and

> >> function level... And quality of life... Most people also have a

> >> fast acting medication, e.g. Oxycodone immideate release, but I chose

> >> not to go that route. Sometimes I really regret it, because when I

> >> have my really bad days, it feels like nothing touches the pain at

> >> all. But I am sure it would have been even worse without the OC. What

> >> I do take on such days is Vioxx and/or Tylenol in addition to the OC.

> >>

> >> Good luck!!!

> >>

> >>

> >> Aase Marit

> >>

> >> >Hi ALL,

> >> >After spending all day yesterday in bed with my shoulder, spine,

> >> >knees and hip hurting. The left deltoid the most. I finally gave in

> >> >and took my first oxycontin. I know I wrote about a month ago about

> >> >the OXY topic and you all gave me great advice. Being the nurse

> >> >whimp I am about pills I never tried it until today. So what should

> >> >I expact to feel side effect wise?

> >>

> >>

> >>

> >> To learn more about EDS, visit our website: http://www.ceda.ca

> >>

> >>

[Guest guest]

Aase,

I forgot to say he started me on 10 mg twicw a day,every 12 hours of the

oxycontin. I do have chronic mod-severe pain in my knees, my right hip and

lower spine. The left shouder is acute/ cronic. The right shoulder seems to

be on the mend. I hope I'm not rambling here, I feel a little spacey and

happy for a change. I haven't been able to type this much in ages.

Sincerely, S.

Re: Uncle! I gave in and took the oxycontin

> >

> >

> >> Hi ,

> >>

> >> I have been on OxyContin now for almost three years. I have really

> >> experienced very little side effects. At first I did experience a bit

> >> of nausea, itching and feeling tired, but it soon passed. It did not

> >> last longer than maximum a month, I think. I do experience problems

> >> with constipation from it now, but a stool softener makes a

> >> difference. Also I do have some problems urinating, which I had way

> >> before any medications that could cause it, but it seem to be a bit

> >> worse on OC though.

> >>

> >> In my opinion the help I get from it in dealing with my chronic pain

> >> far outweighs the side effects... But, there is one thing I really

> >> think is important. That is to take it all the time. Not only when

> >> things are unbearable. That is not the right use for this kind of

> > > medication. If things get to that point, it also works way too slow.

> >>

> >> The reason for the need to take it all the time is most importantly

> >> that what you need it to do, is to break the vicious circle of

> >> chronic pain where the pain more or less accumulates and you just

> >> can't get proper relief. Do you understand what I mean? The OC really

> >> helps with that, and if you take it regularly, you need a much lower

> >> dose and you won't be on that pain roller coaster anymore. It is a

> >> totally different situation, one you really can't understand fully

> >> until you have been on a continuous release medication for quite a

> >> while and see what difference it makes in your all over pain- and

> >> function level... And quality of life... Most people also have a

> >> fast acting medication, e.g. Oxycodone immideate release, but I chose

> >> not to go that route. Sometimes I really regret it, because when I

> >> have my really bad days, it feels like nothing touches the pain at

> >> all. But I am sure it would have been even worse without the OC. What

> >> I do take on such days is Vioxx and/or Tylenol in addition to the OC.

> >>

> >> Good luck!!!

> >>

> >>

> >> Aase Marit

> >>

> >> >Hi ALL,

> >> >After spending all day yesterday in bed with my shoulder, spine,

> >> >knees and hip hurting. The left deltoid the most. I finally gave in

> >> >and took my first oxycontin. I know I wrote about a month ago about

> >> >the OXY topic and you all gave me great advice. Being the nurse

> >> >whimp I am about pills I never tried it until today. So what should

> >> >I expact to feel side effect wise?

> >>

> >>

> >>

> >> To learn more about EDS, visit our website: http://www.ceda.ca

> >>

> >>

[Guest guest]

Hi ,

I started off with 20 mg twice a day. But after a very short period,

maybe a month, he upped my dosage to a total of max. 4 20 mg pills a

day. I have been on the same dosage ever since... When I have my

" normal " level of pain, I most often take one in the morning, one

somewhere between noon and 4 p.m. and then one in the evening. That

way I do something with the increasing pain level that I get during

the day. I guess the pain level rises during the day because of

activity and strain on the joints.

I know one person who also was on it for a while. She has days which

aren't that bad, is my impression, but she has really bad days too

where her pain escalates. She has been on a lot of meds during the

years, but always short acting meds. She started off with 10 mg

pills like you, twice a day. She wasn't happy with OC at all, and

changed to other meds after a while. I think that maybe the dosage

just wasn't right, because it is not like it is not an effective pain

medication...

But there is a difference, and that is that you haven't used pain

meds that much, so I guess that your body is not used to them at all,

so it will need a period to adjust to it. I had been on pain meds for

years before starting OC. I was on short acting different ones until

two years before the OC. Then I started on something called DHC

(dihydrocodeine continus), a medication which they use quite a lot in

the UK as I have heard. It was not approved here, but our equivalent

to the FDA gave a dispensation to import it for me, after my pain

clinic doc applied. When I was on that I had to use meds for

breakthrough pain all the time though, something I don't do now. So I

guess that even if I felt a huge relief after starting it, because it

did " flatten out " the pain level going up and down all the time with

the short acting meds. But at the same time quite a bit of the same

problems remained, since I needed so much medication for breakthrough

pain. OxyContin really changed it, it really was a new life, I can't

say anything else...

You are not rambling at all... To one of your other posts, it

seems like your doctor did think as several of us do, that you need

pain management in general.... The document posted about OC, was

really great!!! It also said just the things I said to you. It is

meant for long term pain management, not for short periods. People

who need short term pain management, need other types of medication

than this. Your body does react with making you feel a bit spacey at

first, but I do think it will soon get better. The document also said

that you should not drive a car on OC. I do, and I have documentation

that it is quite safe from the pain clinic. You need to be careful at

first though, until you get to know your reactions to the medication.

I am as clear headed as I possibly can be on OC. And as one pain doc

said to me, what really is dangerous, is driving in severe pain, not

with the medication. Because when you are in non-stop pain as we are,

that affects your concentration much more than being on medication

does...

It really feels kind of weird how the medication feels like it just

sucks up the pain. It feels like it goes straight to the pain and

sucks it up rather than go to your brain and make you feel spacey. Of

course I do know that it works on pain signals from the brain, but it

is sort of as if it by being busy with that, doesn't make you spacey.

By saying that I am not counting how you feel right know, because

right now your body is not used to getting this medication. You have

to live with feeling spacey and maybe even euphoric when the

medication is new to your body. I think that it quite soon will go

away, if you just stick with it. You others, don't you think that is

most often the case? I think that our bodies quite soon build the

tolerance needed to take away these side effects which we don't want.

I have thought of that so many times, I really can't understand how

people use drugs to feel the way all of us hate so much. It is also

quite weird how people who misuse OC, get really drugged by it. Of

course they probably use a lot, and they also crush it so they get it

all at once, but I do think that if you take this kind of medication

without having the pain, you will get these other effects. Maybe I am

wrong, but...

I was told by a pharmacist not long after I started it, to really be

careful and not take any chances with my meds, because they already

then (just after approval) were getting popular amongst drug users

(abusers)...

When you just get used to the medication, I am sure that you will see

that you suddenly can do things you haven't been able to in quite a

while. E.g. sit and type (look who's talking, he-he)... Or go

shopping... Or go to work without having the constant distraction of

the pain... At the same time it is important to learn to listen to

your body in a different way, since some of the pain signals which

are useful, aren't there in the same way as before...

I just had a phone call from the home services, from the boss

there... I have not known her that long, since she started new in a

year or so ago. She called me now offering to help me get more help,

because she understood that things hasn't been that easy here lately.

I have had help only once every two weeks for years, but the past

year or two it has really not been going that well. I got by for a

long time by pulling myself together and do much at a time now and

then when I could manage doing it (and had to do it), but that does

not work anymore. Even small things seem huge, and I feel I live in a

constant mess because of it. But I have such a hard time taking that

kind of help. I guess it is about exactly the same thing as starting

to use meds. She wants to get me a personal assistant instead of

home services. Yuck... But it will be a better choice, because with

one you are the boss, and you decide what the person shall do. So it

would make a huge difference... Oh well...

Oh well... We always have some challenges to deal with. And it is a

process, that is for sure, to come to terms with different things...

But we do learn as we go, and sometimes we just have to take our time

to get to the point where we are ready for different things, doesn't

really matter what it is, if it is a wheelchair, pain management or

taking help to get things done in your home etc..... But it is my

experience that something good always comes out of it, and being able

to take a huge step when you need to, does in itself make you feel a

lot better, because you are able to take control over your life and

not let the EDS be in control.

Now I am going to pull myself together and get out of this recliner.

There are so much things I need to do this weekend, it is not fun at

all....

Aase Marit

>I forgot to say he started me on 10 mg twicw a day,every 12 hours of the

>oxycontin. I do have chronic mod-severe pain in my knees, my right hip and

>lower spine. The left shouder is acute/ cronic. The right shoulder seems to

>be on the mend. I hope I'm not rambling here, I feel a little spacey and

>happy for a change. I haven't been able to type this much in ages.

>Sincerely, S.