Pain specialist

[Guest guest]

Hi. My name is Katy and I'm 48. I've been a member of this group but

have not visited it for a long time. I have RA along with

myelodysplasia, a blood condition sometimes called pre-leukemia). I

had sudden onset in January 1997. Went to bed thinking I was coming

down with the flu or something and woke up the next morning and my

whole body from head to toe (including jaws) was so painful I could

not move. After 4 months of being bedridden and running 104 temps and

going downhill fast I was admitted to the hospital for blood

transfusions (I had no iron in my blood) and high doses of steroids

by IV. At first they thought I had Stills Disease because my RA

factor was negative, and still is. After going thru all the medical

treatments, we have finally found something that works for me and

keeps me out of bed and functinal. I've already had both hips

replaced, a year apart one in 1999 and the other in 2000. Not sure

if the hips deteriorated so fast because of the RA, the several high

dose steroid iv treatments or both. I was on 20 mg of Prednisone

daily for so long and have finally been able to taper it down to 5mg

a day. Needless to say, I have developed osteoporosis because of the

Prednisone. Right now I am taking 25mg inject of MTX weekly. Daily

meds are 5mgPrednisone, 20mg Paxil at bedtime, 10mg Amitryptiline at

night and I take 500mg of Hydrea every 3 days which is a chemo drug

for the blood disease. For pain, every day I take 40 mg of Oxycontin

3 times a day and if I need it 2 Norco 1 to 3 times a day). I am on

5 vials of Remicade every 8 weeks. My progress has been gradual but

I am now able to take care of myself, do house chores, shopping and

even drive now. If I pace myself and take rest periods thru out the

day (my fatigue is still horrible) I do very well compared to how I

was even three years ago. Now, the problem I'm facing. With all the

negative publicity about oxycontin and the government breathing down

doctors necks, I am scheduled to see a pain specialist next week. I

think the insurance company is also behind it because the oxycontin

is costing over $400 a month (which I cannot possibly afford if I

didn't have a RX card). The insurance company has to authorize the

doctor to write it for me or they won't pay for it at all. I know

I'm seeing the pain specialist to see if there are any alternatives

to the oxycontin and I am scared to death that they are going to take

me off of it and I'm going to end up an invalid again and be in

constant pain. Before I started taking the oxycontin, I couldn't

even hold a coffee cup or pull up my underwear because of the pain in

my thumbs and hands. And then I'm afraid that if they do take me off

the oxycontin and see that I really do need it and put me back on it,

it isn't going to work any more. I watched the Oprah show the other

day about prescription drug addicts and then I started wondering if

I'm addicted to it. I've been taking it for 3 years. What if I am

addicted to it but I still need it for the pain. I am so afraid of

having that pain again. I don't think I could have survive going

thru all that again. Since I've been on pain medication for so long,

I have built a resistance to it because my 2nd hip surgery was so

painful and had a difficult time getting relief from the doses they

were giving me that the nurse couldn't believe I could be in as much

pain as I was after giving me so much of whatever she was giving me.

Now I'm afraid to have any kind of surgery at all. Maybe I just have

a low tolerance to pain (although I didn't before all this

happened). Has anyone here experienced any of this? Have you seen a

pain specialist and what do they do? I know they like to get you off

of pain medication if they can. Believe me, I really do wish I

didn't have to take pain medication to function. Before getting

sick, I would suffer for hours with a headache before I would even

take Tylenol. What will I do if I am addicted to this medicine but I

still need it for the pain? I have taken Vioxx and still do when I

get really really bad but I'm supposed to stay off these kind of

medications unless I really need it because the other anti-

inflammatories resulted in my developing a huge bleeding ulcer. Am I

just being Paranoid about all this? Please advise me if anyone can.

Sorry this is so long but I really don't have anyone else to talk to

that can understand what I'm talking about. Thanks, Katy