Any Decent Pain Groups?

[CaliforniaMama]

Originally Posted by Jebediah

It's not only the physical pain that can be harmful but the effect being in pain has on the mind.

I'll give an Amen to that!

I have the dubious pleasure of being one of those "back problem" people, but that is only one of my incredibly insane list of issues. Like my doctor likes to say, I've got a lot going on, but none of it life-threatening . . . she doesn't add the "yet" yet . . .

While I can't yet totally relate to the intensity, I have days when I'm consumed by the worry of just how bad it will get. I'm just starting to comprehend what it means to have a connective tissue disease . . .

I admit that I want to stop and watch everyone in a motorized chair. Not out of some perverse curiosity, but because I want to know how to do it when I get there. I guess in my mind it's not an "if" but a "when."

You would not believe how triumphant I felt when I did a kiddie amusement park with my kids without my chair. Don't underestimate the level of pain some of "back problem" people deal with. The pain is invisible to all but the closest and I feel like a poser in my chair, but most of the time it is the only way to be able to endure an outing . . .

God, why don't they get this pain thing figured out? It's only science . . .

Edit~okay, so now I have read the whole thread. There's so much here, so much going on, so much to say. I think those of us in advanced levels of pain have a lot to say to the medical community and to the community at large. Why isn't there more talk about it? Not just the bitch sessions, but the real constructive nuts and bolts and dynamics of pain itself. Sure we can spend our entire waking life focusing on our health, on the foods, on the exercise, on the mental and self-healing, but that seems almost narcissitic to me.

There's more to pain than the living with it, enduring it, accepting it. I get a little consumed by it. I want to talk about it ad nauseum. There are so many different types of pain that come from different places ~ there are a lot of nuances and the doctors just don't get it.

I think a lot of friends disappear because they just don't know how to act, what to say, what is needed, what helps, what is invasive or offensive. I go to a place to assemble meals for the month (they go home, to the freezer, and I have food for a month) with another friend in chronic pain. We chuckle because we are both too young to be in this situation and we call ourselves the disabled brigade. The staff are sweet and help us out as much as they can . . . it helps having the company. I get too tired of asking for help when I'm by myself. With the two of us the staff are more attentive. It's nice.

It seems like people get embarrassed asking about what's going on with the all the medical issues. There are too many and they don't really understand all the complexities. They really only want the bottom line and I don't blame them, but since it is my life (and yours), I do want to focus on the intricacies of it all.

It is good to talk ~ not just to vent, but to compare notes, see what crops up. It has been good reading this thread and learn that I'm not the only one who has trouble with the pain meds . . . if I'm not the only one, then why won't the doc listen???? It drives me nuts. Worse than the rude people . . .