Re: Rant about pain control, was: Re: why is noone answering my posts?

December 2, 2008

Hi...

This is exactly my issue! My Rheumatologist keeps saying I am doing better but

everything is really about pain control. I can't do anything without having

" consequences " which really isn't a life. Then I'm told to " take it easy " which

if I take it any more easy I might as well not get out of bed. I was under the

impression that RA was controllable in terms of having some kind of productive

lifestyle which doesn't involve only reading and watching movies and trying not

to move. Open to suggestions?

Stan

December 2, 2008

Marie,

Sadly, I think many rheumatologists don't inquire about and treat

their patients' pain very well. Since your primary sounds useless,

too, maybe you could ask for a referral to a pain management clinic?

Good luck tomorrow.

Not an MD

On Tue, Dec 2, 2008 at 11:00 AM, Marie Miley-

<mrussell@...> wrote:

> <<what do you take now for your RA marie?>>

>

> I am currently taking Enbrel weekly, depo medrol injections monthly, and

> tramadol, though the doctor will only give me about half as much tramadol as

> I really need. She thinks I am currently doing " wonderfully " . I suppose if

> you define spending most of your days alternating between the couch and the

> hot tub as wonderful, she's right.

>

> The Enbrel worked better for the joint pain and stiffness than anything else

> I have tried- outside of Vioxx- for a while. In my own personal experience,

> RA is like the Borg from Star Trek- you can slow it down for a bit with

> something new, but it learns and adapts. Lately, it seems to have spread out

> to every muscle in my body- for the past three weeks I have felt as though I

> had a terrible flu- exhausted and hurting absolutely everywhere. Some days

> it's all I can do to make it upstairs to go to bed. Nothing more than my own

> hardheadedness keeps me from giving up and sleeping all night on the couch.

> My husband and I have decided to sell our two story house and move into a

> ranch with a first floor laundry when the housing market recovers, but for

> now I am going to sleep in my own bed even if I have to be half carried up

> the stairs each night to do so!

>

> I see the rheumy tomorrow and I plan to have a serious discussion about pain

> control with her. For all the talk about how no one has to live in pain

> these days, in my experience actually getting pain medication is a

> challenge. Took me 5 and a half years to get the tramadol- and then, only

> half as much as I need to dampen the pain enough to function somewhere close

> to normally. When I asked for the slow-release tramadol, the doctor told me

> that it is only for people who have pain every day. I told her I did, and

> she replied " no you don't " . And she's better than my primary doctor- he told

> me that " tramadol is a very bad drug " and he doesn't like to prescribe it.

> End of discussion. Yet I know of people getting ridiculous amounts of very

> potent painkillers on a regular basis. How does this happen?

>

> No one wants me snowed on painkillers less than I do- I just want something

> so I can remain productive. What in the world do I need to say to these

> doctors?

>

> ~Marie

December 2, 2008

When I got tired of being abused by my past " Rummy " , taking meds away from

me because one part of a blood test showed a possibility of a problem, I

went back to my original Rheumy. I told him that I wasn't being treated well

at all and not young enough to worry about painkiller addiction, and had cut

almost all my meds, he immediately got me scripts for Morphine for pain,

Lodine for inflammation, and reintroduced the rest of my meds. I was much

improved within a month and still am doing very well in the way he's

treating me. Of course I still have major issues, but they are manageable

and he works with me in all that I say I need. The only thing we can't get

fixed is the state law on Morphine controls. I would love to get a 3 month

supply but laws keep him from doing that for me. It's all in the way you and

your doctor work together.

SPEAK UP and your docs may hear you. After all, they work for you, not you

for them! And don't feel that you're obligated to play by their rules, or

what others think.

Dennis in eastexas

On Tue, Dec 2, 2008 at 11:00 AM, Marie Miley- <mrussell@...

> wrote:

> <<what do you take now for your RA marie?>>

>

> I am currently taking Enbrel weekly, depo medrol injections monthly, and

> tramadol, though the doctor will only give me about half as much tramadol as

> I really need. She thinks I am currently doing " wonderfully " . I suppose if

> you define spending most of your days alternating between the couch and the

> hot tub as wonderful, she's right.

>

> The Enbrel worked better for the joint pain and stiffness than anything

> else I have tried- outside of Vioxx- for a while. In my own personal

> experience, RA is like the Borg from Star Trek- you can slow it down for a

> bit with something new, but it learns and adapts. Lately, it seems to have

> spread out to every muscle in my body- for the past three weeks I have felt

> as though I had a terrible flu- exhausted and hurting absolutely everywhere.

> Some days it's all I can do to make it upstairs to go to bed. Nothing more

> than my own hardheadedness keeps me from giving up and sleeping all night on

> the couch. My husband and I have decided to sell our two story house and

> move into a ranch with a first floor laundry when the housing market

> recovers, but for now I am going to sleep in my own bed even if I have to be

> half carried up the stairs each night to do so!

>

> I see the rheumy tomorrow and I plan to have a serious discussion about

> pain control with her. For all the talk about how no one has to live in pain