Re:morphine?TJ long.....sorry

[Guest guest]

I know I'm way behind on this and that this conversation has probbly been

over for some time but I forgot to ask to go off list while in the hospital and

am just catching up now even though I came home again a week ago yesterday. I

read a few but had too many e-mails. I just read in one post that someone

mentioned to their dr that most Edsers on the group are on MS Contin. I am on

Oxy Contin 80mg twice a day with percocet for breakthrough plus some other drugs

for spasms and stuff that are supposed to help with pain. I'm not exactly sure

how long I've been on the long acting pills but I think 3 1/2 years. When it

was first talked about it was brought up by my pain specialist (who also has

EDs) and we set a cap for how high I would go and if I had no relief at that I

wuld be weened down and put on something else. I was told that he wanted to be

careful about how high a dose I could have since I am young (am only 31 now, so

I am nothing like your son Cindy). He said that he would not keep going until I

had good pain relief because he did not want me to be 40-45 with aout of control

pain and there be nothing that can even ease it a bit. After my long

conversation with him he call my physiatrist and he had a similar conversation

wtih me, he also told me how if i was given pills for break through how I had to

be careful with them and to not tell people what pills I was on because as

street pills they had a very high value and people may try to steal or buy them

from me. He them explained the difference between being addicted and dependant.

He said that I would be dependant on this drug because it builds up in your

body. You do not get a high from it and it is not meant to take your pain all

away but to make it more tolerable. He then did my pain level chart with me.

My family dr is my primary perscribing physician because she is close and I see

her the most, I do not see my physiatrist(Dr ) anymore because he did not

want me to get my shoulderblade fused but I did what both my shoulder surgeon

and I thought was best for me. It felt like Dr stopped trying to do what

was best for me and started using me as a research project. I was afraid to

tell him I had the fusion even though I knew then and still know it was the best

thing for me to do. I ended up letting the time run out that you could go

without a referal. My pain specialist and my family Dr came up with an

agreement he would research the pills for my pain and my dr would take his

advice and if she didn't agree they would talk and work it out together. She

broke the agreement I think in the first month so he has nothing to do with my

pain now. He is teaching me some other ways do deal with it, he's trying to

teach me self hypnosis right now. I am going to ask my family dr to find me a

pain specialist in London hopefully one who has some knowledge of EDS. I have

had a hard time with controlling my pain for awhile but a few months ago both my

IT Bands flipped over and became stuck and both my hips were stuck out of joint.

Shortly after that my pain reached a whole new level and I have had no control

whatsoever since then. wheni went in the hospital for my hip May 26 I asked the

Dr who was reduciing my hip what he would give me for pain before I was admitted

and before he reduced it (the way they use puts me to sleep and I am really out

of it for awhile so I forget to ask questions and if I ask they come out

allwrong). I was on 60 oxyconti twice a day and he put it up to 80mg twice a

day plus 2 percocet every 4 hours for breakthrough. I go see my family Dr Mon

and I will see if she is going to keep it at that, I really hope so. When I was

at the 60mg my pain level was 8 1/2 to 9 and the 80mg has put me to 7 1/2 to 8.

It may not sound like much but every little bit helps. A friend of mine who is

on long acting pills on doses that sound high asked her dr if onxycontin was

viable option for her and she had tried the MS Contin but it made her very very

itch. He told her the oxycontin was stronger. If anyone understands any of

this please tell me and I'm sorry to bring back something you have probably

already stopped talking about. Also I am not trying to say my pain is worse

then anyones or my pills stronger I just want to undrstand things. Saying what

my pain level is I was actually empathising with Dylan, I have no desire to do

anything. I try to find a way to be semi comfortable and if I find a position I

stay in it as long as I can.I just hope that when i fianlly get my IT Bands

removed I will have some relief, the dr wasn't really giving me a lot of hope.

When i finally have my shoulderblade refused and whatever wor done on the front

I know I will have some relief as I did last time. I just wonder what he will

do to my right shoulder because his biggest fear is me having both shoulders

completely fused or ne all fused and one half. It scares me too but I will try

anything.

I'm sorry once again my e-mail ran on forever. I'm sure you're all glad I don't

post often or you would all have eye problems or more eye problems. I'm sure as

I get back into reading steady and nnot just glancing through my e-mails will be

shorter because I will know what's going on.