VENT (not us but STILL....) | Arthritis Information
On top of this Intervention episode about dealing with pain, is it pain, what is too much pain, what are too many meds....I am hearing another story that is getting to me.
I'm telling you, it seems young preteen/teen girls are the most screwed of all in treatments. I see posts from moms, when the dr. can't figure it out, or when their treatment isn't working, suddenly the girl needs a psychiatrist. Or has 'amplified pain', like it really can't possibly hurt that bad. HOW DO THEY KNOW??????
Hubby knows a guy whose daughter has RSD, some horrible pain thing, any injury keeps hurting and hurting forever, intolerable, uncontrollable. She is in a wheelchair.
Got sent to a 'pain boot camp', where they 'reprogram' you to handle pain. You 'relearn' pain?
Mystery Dx/Jackie Spar/Lyme episode? Same thing she went through. Except she was in real pain, because she had Lyme. They just thought she was crazy, amplified, lying.
Pain boot camp is major PT. In-patient. Mom, off the recliner, you are sleeping at Ronald McDonald House. No witnesses, huh?
Well, the poor RSD girl had to leave the program early. She had a leg injury so severe IT WILL REQUIRE SURGERY. During PT. Imagine. And, if you body amplifies pain from any injury....
The friend she made while there? BROKE HER ARM. During PT. Imagine. And she said it hurt at lunch TWO DAYS before they had an ortho look at it. Imagine your child being in so much pain all over, that she only 'mentions' a broken arm!!!! It doesn't even make her cry!!!!
And they didn't listen to her. Because these kids 'lie' about pain to get out of PT. So she had TWO DAYS OF PT WITH A BROKEN ARM.
It is sickening.
Good Lord, people, 39 people have looked at this and NOBODY has a comment?
Suzanne,
While you're noticing this for pre-teens and teens, I'm seeing this for ALL of us. How many of us don't tell our docs how bad it is? We have some idea they'll say we're caging for drugs or we're the typical 'hysterical woman'.
Why is a man's pain taken more seriously than ours? What was that stat - something like it takes us years for a diagnosis and most of them get it in ONE visit?
This was posted by a friend on a different board.
Or GoGo's TOFU group?
Because the only people hurting are us - not the MD's.
Pip
Men's pain is taken more seriously because, women have HORMONE issues, and teenage girls, well, they're totally freaky, right? Men's hormones just make them horny. Women's hormones make them hysterical, overly sensitive, they make mountains out of molehills, etc., etc., blah, blah, blah. We need more women doctors, I tell ya. A few with A/I issues would be ideal.
Those poor girls.
WHY ARE THERE NO PAIN BOOT CAMPS FOR ADULTS????? If it is such a good idea?????I can only comment from my own experience and it wouldn't help with this thread. I didn't see the intervention episode. Maybe, like me, those 39 others didn't see the episode. I don't usually comment if I haven't seen something or know something about the topic. No one in the chronic pain group that I work with has complained about not being taken seriously. They've complained about having to go to pain management and I think everyone at some time has felt that their pain control isn't adequate. The squeaky wheel, etc. etc. Guess I'll have to look for that particular episode and find out about pain boot camp. I'm sure that the topic will arise with the chronic pain group. Anyone have any specifics on pain boot camp to get me started. Lindy Lindy - this wasn't on Intervention, just the pain issues seemed parallel to me.
This type of 'pain boot camp' was mentioned on a Mystery Diagnosis episode. I'll PM you some more info. Wow pain boot camp sounds scary. I seriously can't imagine sending my child to one of these even if they complained of pain and the doctors found nothing wrong.
Hubby said the dad was very hopeful about the program, because otherwise they were given no hope. They are told there is nothing you can do for that condition. She had something in her spine already, like a stimulator or something? They are desperate for their daughter to walk, run, do everything again like she used to. Apparently, before the injury, some progress was made, but now they are understandably quite upset.
I saw an e-mail where the dad described the program. He said he asked the doctor if it was like holding your hand to a hot, burning stove, feeling the pain but believing it would go away. The doctor said yes, that was accurate, although he had never heard it described that way.
So in that statement, to me, the doctor acknowledges the pain is real! And he just....tortures?....them until they can't process it anymore????
I agree, shykymom, I couldn't put my child through it.
[QUOTE=Suzanne]WHY ARE THERE NO PAIN BOOT CAMPS FOR ADULTS????? If it is such a good idea?????[/QUOTE]
There are. It doesn't sound like a bad idea, if implemented properly.
http://www.rehabpub.com/features/102005/3.asp
*quietly raises a hand*
I've never told my doctors how much things hurt. No one around me was hurting, so *I* figured I was crazy. Even now, it's terribly difficult for me to tell a doctor. They are professionals who have gone through years of schooling to tell me what is or is not wrong with me, and it can be very intimidating. That's something *I* have to learn to get over.
So that first post kinda hit me. Made me think back and remember, and it was kinda scary.
****Enough with the memories!*****
*****Issue 1*********
Would a pain camp work? Yes, as Kelly said, if implemented properly. We have already found and posted articles about how people in chroinc pain's brains are NOT wired properly. Sections of the brain that are NOT supposed to deal with pain, are. And it can amplify it and make it worse.
Of course, if everything that show displayed (girl with broken arm, etc) is true, it was OBVIOUSLY not being conducted right.
***********Issue 2.*******
Men's pain taken "more seriously" than women's. Honestly, this may be our own faults.
Hear me out!
We *DO* have hormonal issues that are much stronger than meds, and we ARE designed to carry certian pains better than a man. Certian COMMON pains. Our abdomen and pelvic area are *way way* stronger than a mans. We typically can tollerate a lot more pain in that area than a man - so sure things go overlooked or undiagnosed. Of course, that's not always the case, it's just an example.
Hormones interfere with *a lot* of your body. More so than we probably even know right now. It seems like every year they discover something else that being pregnant does, or having your period does, etc etc. We tend to endure it and not speak up, because "its only a week" or "it'll pass" etc etc.
We ARE the caregivers, and we DO let ourselves get thrown under the bus. It's in our nature. After decades and decades and decades of this trend, we begin not only to not believe OUR OWN pain, but pain of other women. And people pick up on that, subconsciously or not.
*gets off the soap box* And that's what I think about that. LOL
arriscolwell2008-02-22 17:26:06Okay, I wasn't clear - there was no show about this. Hubby talked to the dad of one of the girls, that is how I know what happened. Yup, sure was. That post took me way back, I gotta be honest.
I can honestly remember being around 11ish, and thinking "I wonder if it's SUPPOSED to feel like this?" Now that I look back on it, I kinda think "HUH? Well, no, no it's not supposed to feel like that...............................at least I don't think so."
**********************************
Seriously though, what 11, 12, 13 ,14 year old child - boy or girl - wants to be in so much pain? There will always be cases of children who are "attention getters" but let's get real here.
Are there enough attention getters, to warrant someone forming a PAIN CAMP??
Me thinks not.
And here's another question -
Why is it so "okay" for a 40-something man/woman to be in so much pain they take narcotics every day to function.
But a 12 year old gets nothing? (not always, I know, but more often than not)
Is this another case of "experience" --- The "They're older and so they know what pain is" sort of speech?
I'm rambling. I'll shush now. lol
That's what I say! Get back to work, find out what is wrong, what is causing the pain! No, this guy says let's teach them to relearn pain, like thinking a hot stove won't burn you?????? But Suzanne, to an extent that theory IS true. They've already proven that.
Granted, I don't think they've learned enough to where they would even KNOW how to retrain someone for pain.
But I KNOW we have posted an article, where they did a study on people with chronic pain. Their brains were NOT firing right. Areas like speech, and motor skills were working on their PAIN, instead of what they were SUPPOSED to be doing.
I think the study was more to explain why people in chronic pain have cognative issues and memory issues, etc etc. But LOOK!! That's exactly the theory. You can retrain your brain to do a lot of things, why not pain?
If our brains are so obviously NOT taking up the pain information properly, causing it to hurt more, why not retrain it? You may not be out of pain, but perhaps you could lower your narcotic intake, or have more relief from simpler methods like water exercise and heating pads.
KWIM????
All I can say is apparently the PTs doing this at this particular location have gotten a little careless/callous??? Broken arm and injury requiring surgery. Supposedly the top children's hospital in the country.
Huge red flag they don't want parents around, in my opinion. I can see how it would be hard to watch, but if you agreed to it, I don't think you would intefere unless you saw obvious signs of danger (which it sounds like needed to be done!). I gotta agree with you there. Something is seriously wrong when DOCTORS don't know they've "assisted" in a child breaking their arm.jesse88---I agree with you on the lack of female docs. I had a female rheumy for quite sometime and she was GREAT!! probably the best doc I ever had--then she moved away to write a book so I got another rheumy--this time a man---and what an ass he was--cocky and just an all around bastard who disguised himself in humor--this made him a little easier to take--I lasted 7 years too long with him. Now I have another female rheumy and she is much much better! It seems to have made a difference in the treatment I have gotten.
My sons pediatric rheumy is also a female---very nice too.
wysone2008-02-22 19:28:46I've never had a male rheumy. 24 years, all female. Serious!!!
I've only had a couple of male PCPs, they were *very* young and - don't take this the wrong way, it just is what it is, I dunno why- they were all gay. I have no idea how we swung that, but there ya go. Maybe I just attract feminine folk!
Justin prefers male doctors. Man to man, ya know? Heh. I have to admit though, his doc when he had his surgery, was AWESOME. I'd go see him ANY DAY. I'd even share gorey details, he was just *that* good of a doctor. It never felt like telling "another guy" anything. KWIM??
(I gotta stop using that KWIM thing...SORRY!! lol)
Katie,
Was that good doctor you are talking about a cabana boy??!! That is HILARIOUS though! I remember a long cover story in the LA Times a while ago about 'desensitizing camps' where they sent kids who couldn't 'bond' correctly after being adopted. Abused kids. All kinds of trust issues. The parents couldn't take it any more and resorted to these camps. Well...they killed a couple of the kids making them go thru the 'birth process' (smothering/suffocating) them. I can't see who said 'bad ideas disguised as good science) but they were right on. Where is the 'humanity' in these ideas - like this and the one Suzanne wrote about.
Katie - I agree totally about how we women are doing this to ourselves. We have to stand up and stop apologizing for what we feel.
But, as usual, I respectfully disagree about how the pain works in all this. Coming from the 'other side' I think the pain is sooooo high for some people that their brains really do start working over time to process what they're feeling. But that doesn't mean they are desensitized...it means they're in a HELL OF A LOT OF PAIN.
Sorry,
Pip
The birthing process. They had a CSI about that once. LOL I love my TV education.......
Who were you disagreeing with on how the pain works? If it was me, I think you might have misunderstood what I was saying....
I'm disagreeing with everybody...as usual.
But the sentence should have read "But that doesn't mean they are oversensitized...it means they're in a HELL OF A LOT OF PAIN. Not desentized as I wrote.
Do you remember that article that someone posted? About how they did the scans on people with chronic pain and their brains were like "WOAH!"
Even at rest there was far too much "pain" activity.
That should read - even at rest and IN NO PAIN, their brains still showed "pain" activity.I remember it and others like it - I'm saying that I think Suzanne is more on the money than those researchers. :-) People know they are in pain. Heck, amputee's have 'phantom pains' for limbs that aren't even there. But for people like us...I'm just questioning that whole assumption.
I've been studying that HPA axis thing. It's like 'something' (myco's in some research - your milage may vary) attack the Hippocampus and thalamus (spelling) and start changing the receptors on cells. Some cells become hormone resistant to insulin, some to adrenalen (spelling) some to estrogen. When they become resistant it's like somebody rekeyed the house and the hormomes can't get in. If they can't get in...they can't communicate. And if they can't communicate everything starts breaking down. So, add in things that influence reuptake in the brain...like norepheon (spelling) and epinephren and serotonin (which is implicated in mood, depression, aggression)...I'm just saying I think we do feel that much pain and being women try to buck up because we've had kids and when some white coat says it can't be that bad we question ourselves instead of the fact that they have no idea what we feel because women are more at 'risk' because of the hormone connnection.
I'm babbling again, aren't I?
Pip
"Heck, amputee's have 'phanom pains' for limbs that aren't even there."
EXACTLY!!! How is that NOT your brain misfiring in some way?? That limb doesn't EXSIST anymore, how can you feel pain in it? Cause you've had such a horrible pain, or such chronic pain, that your brain is confused and over loaded. I'm not saying you're not in *any* pain, just that your brain is so overworked it CAN'T process it all, and it just makes it worse and worse and wose.
Then I definitely should stop babbling. Thank you tho, for your kindness.
Katie - how much of phantom pain is emotional shock/stress? Like when people have a near death experience - or even a serious 'man I almost died' car accident - they relive the scene or trauma over and over trying to process it and get caught in a loop.
I think you're saying part of our pain cycle is the loop - break the loop or cycle and you can stop or lower the pain. This would tie into the recent studies on laughter etc. and behavioral retraining to help break the cycle.
But I'm saying that part of our pain is PAIN. Almost every one of us with severe onsets remember being hit by the RA bus. And we fear being hit by that bus again in a flare or whatnot. I remember my one rheumy patting my hand and laughing (trying to be comforting) and saying 'it will get better in a few years' and thinking, at the time, 'will it get better or will I just be used to it?' It was only about 2 months later I'd have described myself as being 'stupified' by the pain. You can't fight, you can't think, you can't question your doctors when you're in that amount of pain.
So, I imagine Suzanne is right - these kids in these camps get put in those camps by well meaning family members who are trying to help them 'break the cycle' but are in so much in pain that when they add in more pain they can't even feel it. Isn't that what happens to torture victims?
I had a class in college - some intro to psych - and remember being amazed when they told us that hypochondriac's actually feel real pain. So, even that 'phantom limb' being gone makes the person crazy with pain or whatever. The nerves are still active. They are working. They obviously are not working correctly - but it still HURTS.
I just think the cell receptor's are mis-aligned, for whatever reason, and raising the pain threshold is not the way to fix the problem. What they need to do is work on ways to lower the pain.
Pip
P.S. This also explains why we are constantly told it's in our heads or they think we're caging for drugs. They don't understand the pain we're in so it can't possibly be real.
Pip - there are studies showing that psychotherapy can induce the same types of changes in the brain as antidepressant therapy.
Also, regarding the "boot camp" where they were breaking kids' arms during "physical therapy" definitely ain't right. But the center that I read about in Chicago doesn't sound like it pushes people until bones break. Instead, they work on ergonomic workstation solutions, physical therapy (not bone-breaking), aquatics, occupational therapy, biofeedback, relaxation techniques, psychotherapy... sounds like lots of the stuff many of us have used, with varying degrees of success.
Phantom pain - a mom on another board posted that her husband is an amputee, and there is some herb that is the only thing that helps his phantom pain. She also uses it on her daughter. I think it starts with an 'm', I'll post it later when I can find it.
Maybe 'pain boot camp' is available for adults, but in all my board days, I've never seen a post from a graduate or prospective student. The 'amplified' pain thing is much more common on parents boards. There are at least two ped rheums who refer to themsleves as "the world's leading pain expert" (Imagine.) and both are into this 'relearning' thing.
My personal opinion is they get to that point after they try everything they have and your child is still in pain. They don't look for other causes of pain outside the rheumatology world. Must be amplified, must be a lie.
One reason I have formed this opinion is because I think we have the opposite problem. Ped rheum does not believe my daughter is NOT in pain, because she isn't on any of his meds. He called about something prior to her last appt., and interupted me to ask, "You don't even give her any ibuprofen????"
No, no, a thousand times no!!! For a quite some time now. Hello??? You write the rx for it - have I asked for a refill??? Am I asking for Prevacid anymore???
I thought he knew all that. He does, he just can't believe it, I guess.
[QUOTE=JasmineRain]Instead, they work on ergonomic workstation solutions, physical therapy (not bone-breaking), aquatics, occupational therapy, biofeedback, relaxation techniques, psychotherapy... sounds like lots of the stuff many of us have used, with varying degrees of success.[/QUOTE]
This sounds 'normal' LOL.
On the Mystery Dx episode, the girl said the pain would be so bad, she would vomit during therapy.
Here is what the mom posted:
"FYI - moxa is one of those things that seems like just crazy talk, but her Dad is an amputee and definitely not into alterntiave treatments, but the ONLY thing that gets rid of his phantom limb sensations is waving burning moxa in the area where his foot used to be, see http://en.wikipedia.org/wiki/Moxibustion for more info"
Check out the link, pretty interesting.
But pippy, how do you lower the pain with meds, when you're stuck in a mental loop????
I'm not saying breaking the cycle will "cure" the pain, or even make it managable - but it will break that vicious loop.
Have you ever seen "What the Bleep Do We Know?" GREAT MOVIE you'd love it. Talks a lot about the power of mind over matter. And gives lots and lots of examples.
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