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 . . .

*Sends loving and healing energy to you*
I am sorry you are going through this & will reply more to your post. It is great to have you here to talk with. Not that it is great that you are in pain... nope, nope.

BTW, it is a bad sprain, not a break or fracture.

We have a lot of the opposite problems... it will be interesting to discuss it. But, I have to go vote in a few.

The Drs. don't address it more, IMO, because it is not fully understood. I am very fortunate to have a great osteopath/Gen. Prac. who is very up-front about the stuff he/ & the rest don't have down. He is a great Dr. & friend.

[CaliforniaMama]

You know, I just keep thinking of all the great advances that have been made, things like MRIs and new types of CAT scans and whatnot, so why the heck can't they take a good look at the nerves and figure out how to calm them down, or at least figure out some better ways to block the signals?

I got so frustrated with my visit to pain management. My primary basically said, I told you not to go.

All PM told me was: sleep on the floor because harder is better and forget surgery because they never really know where the pain is coming from no matter what the MRI says.

Gee, thanks guys.

I seriously do not know how you have endured. Well, I imagine it is pure grit and determination. Between the appointments and disrupted life and limitations and pain, it leaves little room for anything else.

But then I have my kids to keep things in perspective, like my 7 year old shooting my 3 year old in the eye with a nerf dart. I was so pissed. We had just been playing, supervised, and the damn guns had been put away, I turn around to answer the phone and SHRIEK! So, I bandanged 7 year olds eyes so he had to be blind for a day . . .

It has been a long road... I am on my fourth pain Dr. (& he is no winner).
But, my (immediate) family is very supportive & I have a great GP. Makes all the difference. You hang in there and keep looking.
My three year old jumped off the bead onto his head, onto tile yesterday... visions of brain damage (not that he does not have that as a three-year-old boy already). He is as ok as he can be. I hate not being the one to pick him up.

[CaliforniaMama]

The other night when I was perusing instead of sleeping, I came across this site on pain: http://www.jr2.ox.ac.uk/bandolier/bo...ag/index2.html

The really sad thing is that when they talk about a painkiller being effective, the benchmark is 50% pain reduction. So, if we are in blinding pain, I guess that takes us down to barely tolerable pain?

Gee, watch me jump for joy :P

Still, it was interesting reading, especially when it gets into how to read statistics and discovering that gee, the reason why pain blocks don't work on most people is because they really just don't work on most people.

I cancelled my pain block appointment. With the luck I've had with medical treatment, I'd probably have an allergic reaction to the durn stuff.

Now all I have to do is convince my Primary that I really am having reactions to my pain meds and to convince her to try something else. The Oxford site explained just why I am reacting and what is going on, so at least I know it is not my imagination!

But, weirdly, the Chinese herbs I'm taking, stuff I can't even pronounce, seems to be doing the most good of anything I've tried in the last two years.

And I'm not even taking it for my back! Strangely, it has gotten me to the point of actually being able to drive this week. That is a HUGE triumph for me.

You are lucky that your family is so supportive. That makes a big difference. Plus having a great GP. I didn't know there were any out there.

Now, rumors have it that our insurance is changing, so who knows how that will affect everything . . .

You think the things a 3 year old does is scary, wait until he is 7! My crazy son keeps trying to jump from higher and higher structures. I'm just waiting for one of those bones to go *snap*. Somedays I think he is an Evil Kneivil (?) in the making.

I hear you... it is starting with Finn already.

I know I will never be pain free. I never have been, so I have a very different outlook on my pain management than most patients. My Drs. find it refreshing, so they tell me.

I will not, cannot, drive. The risk of my having a spasm and harming someone else is too high... one I will not take. Between the meds I take, the feeling lost in my legs, the lack of sleep and the spasms... just no.
Not my right to do that. I see people like me at the Dr. who have driven themselves and wonder how they can bring themselves to take the chance... what are they thinking?... just can't fathom it.

As for my family, supportive-vs-controlling, flip a coin.

[limey]

Originally Posted by rkzenrage

I...
As for my family, supportive-vs-controlling, flip a coin.

But they are two sides of the same coin. My mother needs my increasing support, I want to offer support, she sees some of that as control, I don't want to take control, but I do want to offer support . It's hard on both sides of the fence, as I'm sure you know, rk.

I don't know man... I can support my mom without telling her what to do, how to do it and when to.

[limey]

Originally Posted by rkzenrage

I don't know man... I can support my mom without telling her what to do, how to do it and when to.

I've been thinking about this ... isn't it a "support ... control" continuum, with the parties involved almost inevitably having different views on where the switch happens?

Imagine this series of scenarios:
A person who is incontinent, and unaware of the fact that they are sitting in soiled clothes
A person who hasn't washed for weeks and smells of BO
A person who says they haven't washed their hair for years but you wouldn't know if they hadn't said
A person who doesn't take a shower as often as you do
There is, isn't there, a point where any one of us would step in and tell this person (let's assume we care about this person) to wash more often? But I expect the point varies for each of us, as it would if we were the person described above.

Is it the triple "advice" that bugs you, rk, "what to do, how to do it and when to"? Can you ask her to tone it down a little? I'd like some pointers, as I know I can come over bossy and that's not how I mean stuff at all .

I have no problem with comments on how I smell when I do... though it is embarrassing when I cannot shower by myself. If I smell it is a fact, as long as it is done with compassion I am ok with it "do you need help bathing? I will help you." is fine. Just telling me I smell is not... that is just cruelty for cruelty sake to make one feel better about themselves at another's expense. I know when I smell, I am not an idiot.
This is not the kind of stuff I am talking about. It is hard to explain. It is micro-managing our lives, trying to butt-into things that have nothing to do with my illness or things that I have a handle on, but she just does not like how I handle them.
I am a very different person than she is, she has a hard time with that... often. For some reason she takes it personally... it makes no damn sense.

They think my wrist may be a torn tendon now... I wonder what the next guess will be?
Getting a bit worried about these five kidney stones. I have not started to pass them yet. I do not want them to get too large to do so.

[CaliforniaMama]

Originally Posted by rkzenrage

I know I will never be pain free.

Five years ago I thought that's how it would be for me for the rest of my life. At the beginning of this year, when the pain escalated, I questioned how I could continue to function this way.

But now that it is easing I'm actually more anxious about it.

In that state of constant, intense pain, it becomes such a reality it is the lens through which I saw the world. Now my world has changed . . . again.

In your shoes, I would be reading that and saying "yeah, but give me that change, I'll take it!" I wish I could. I wish whatever miraculous (or not) thing that is going in me could be duplicated.

If I were rich, I would dump tons of money into research of the nervous system, how pain works, etc. Oh how I love to rant about the medical system . . .

Originally Posted by rkzenrage

As for my family, supportive-vs-controlling, flip a coin.

That's a toughie, all right. But you know, I tell my husband all the time that I don't like how he does things and there is nothing wrong with him!

It is hard to live in close proximity and not see that someone could be doing something differently, better, more efficiently . . .

We've practiced so much open communication in our relationship and when we've talked it all out and all is said and done, it gets back to square one: what do I want him to do? Hell, I don't know! I just want it to feel right!

Mars & Venus... we function very differently. As long as it does not directly affect my life or something I do on a regular basis I could care less what she does or how she does it.
Guys don't worry about how it feels, we worry about how it works.

[CaliforniaMama]

Originally Posted by rkzenrage

Guys don't worry about how it feels, we worry about how it works.

Or doesn't, as the case may be . . .

[limey]

rk, I hope my last post didn't seem tactless to you, I was not thinking of you in your situation when I put up those examples, but more of myself as someone wishing to offer support without being controlling: and perhaps that focus made me tactless - if so, I'm sorry for that.
I am grappling with support issues respecting my mother and will, I think, start another thread about that, rather than hijack yours ... but I'd be grateful for your input if/when you feel like it (obviously).
Meanwhile, I'm still sending you positive stuff from across the briney ...

[limey]

I've been away for a bit - but you don't seem to have posted much recently either rk - are you all right?