[Switch]

So, I suffer with pain every day, sometimes very bad, often bearable, but always there. It doesn't always keep me up at night because I sleep so heavily, and often sleep is my only releif. The only time I've had slight relief of this while awake was on Seroquel, and I can't continue to take it for simply that reason.

Mostly it is in my joints, specifically my shoulders, elbows, wrists, hands, neck, entire spite and ribs, and often my hips as well. I have been told many of my ribs are out of place. My GP said I have carple tunnel in my wrists, but I don't think it can spread all the way through my body!? I crack all the time, my joints crack almost every time I move (or sometimes just shift positions), and get very stiff and painful to the point I have to crack them to make the pain lessen. I have very little feeling in my body now, especially to crushing feelings, and to hot and cold.

My friends descovered a few months ago that my bones are actually flexible. They tested it by bending my arm bones between their hands, and by crushing my hands. I couldn't really feel any of it to be honest, but I was not surprised. They were freaking out. I have had all my fingers locked in a car truck hatch before, and not break. Admittedly they were squished smaller than the bone should have been, but nothing was broken, and my hands were barely bruised.

I don't often complain about this, or even mention it to people. And if it does come up it is always more of a "party trick" than a complaint. I have only brought it up briefly with my doctor when it got to the point I couldn't type (I have to type because handwriting always hurts, and makes it hard to think because of an LD), but left it after that. What makes it hard is that I'm 20, dealing with a lot of MI's, and "look" healthy.

I don't know what to do or who to tell, or if medication is worth it. If I start meds for it now, I won't have anything strong enough when I'm older. And it might just distract from everything else. I guess what I'm asking is, do I count? Is this real? Half the time I wonder if I only imagine the pain, because I'm so good at ignoring it usually. It's the one thing I can honestly say hasn't ever controlled me because I worth through it, even if it makes me cry.

Will it just get worse? Should I see my dr? I don't even know what they could do...

I just wanted someone to know. I've been living with this since grade 6. I'm now in 3rd year university.

[Leed]

Of course you should talk to your doctor! Ask him to run some tests or refer you to a rhematologist, or orthopedist, or whatever doctor he deems appropriate. But you should be seen by some specialist. Perhaps all you need is an anti-inflammatory or something like that. Whatever the case, you should be seen!

I hope you find out what the problem is - please let us know when you do find out. Best of luck & God bless. Hugs, Lee

I know exactly what you're dealing with, hun. I have reactive arthritis due to psoriasis, chronic migraines, peripheral neuropathy, & I'm at a very high risk for lupus/muliple sclerosis.
If you have the insurance, GET. TO. A. DOCTOR. You don't want to let it get worse. And diagnosis takes a hell of a long time, so you really need to start sooner rather than later. Pain medication is a sham, more often than not, ESPECIALLY if you have a chronic condition. It leads to addiction & it distracts from the source by concealing the symptoms... Locating the source & finding a treatment for it is your best chance at a good quality of life.

[lorider]

If you still haven't made a Dr. appt., I want to add my voice to the others: you are obviously dealing with some kind of illness. And it's obviously not getting better on its own. The sooner you seek treatment, the sooner you can begin to feel better. Good luck!

[Switch]

I don't know if I can make an appointment... my GP is on maternity leave, and I brought it up with her replacement. She was the one who said that all I needed was to do yoga and that I have carpal tunnel... I can try with my real GP when she gets back....

(self-deprecating me says "Maybe I deserve it and I'm just whining and it's not that bad and it's not worth checking out because you've bothered the doctors enough" but I'm trying not to listen/give in to that...)

Yoga doesn't fix bendy bones & uncontrollable pain. Sorry, but that's the truth. I've been doing yoga for 6 years & while it's made it a little easier, it doesn't fix the cause. And if your GP doesn't think it's worth checking out, even though it's on YOUR or YOUR INSURANCE'S dollar, then she doesn't need YOUR business. Until you're out of options for a possible cause of your suffering, there's no reason they should deem your concerns silly.

[Switch]

Actually, I'm Canadian... there's no money involved in it for me. I'm still scared to bring it up again though. ( partly because my anxiety is on a rise and I keep thinking it's not worth it and that she's going to get mad and she's going to think I'm pathetic and complaining about nothing... and that you guys are going to think that , but I'm trying not to let it get to me)

But yeah, I don't pay anything to go see her. I just also think they don't know what else to do. I mean... I can dislocate things that shouldn't dislocate without trauma (my collar bone for instance dislocated in my sleep one day). Mostly I don't think they know what to do, or where to start, and I don't either. And I don't want to be on even more meds... But I also want to be able to not hurt anymore.

I keep trying to look on the bright side: I don't feel pain very much. Crushing doesn't have a feeling, and it's really hard to pin me because I can slip out of some of the most extreme holds without feeling the pain. I just wish there wasn't a constant underlining hurt, or that I didn't have to crack all my joints to make it hurt a bit less.

I should stop complaining now. I'm sorry guys, I sound like a wimp. I'm really weird right now... I'll try and not be this pathetic again. Sorry.

Oh pfft. You're not being pathetic. It sucks to KNOW that there's something wrong, but there's no tests or knowledge to validate what it is exactly. I hope you find an answer somewhere. Post on a bunch of medical question forums, maybe?

[lizardlady]

Switch, it doesn't matter who is footing the bill for your treatment. You deserve to be heard by your doc. It is not normal for a collarbone to dislocate when the person is asleep. What about making a list of the things that have happened to you and give it to the doc? If she won't listen to you find a doc who will.

[bipolarmedstudent]

It sounds like you have a connective tissue disorder. Like Ehlor-Danlos or something like that. Please go to a doctor. If you don't like your GP's replacement, go to a walk-in clinic.

[jax01]

Yes, go to a doctor, one that listens, and spill it all. Tell them everything. Even stuff that seems unconnected but still bothers you.
Doctors not listening is one of the things that I can't stand. seriously, don't let doctors treat you like you don't have a right to their attention. Or that your complaints are not valid.
I try to stick to female doctors. They tend to actually listen.
There's also some kind of weird macho-barrier with some M docs that can be really ridiculous. If you've run into one, you know what I mean.

I sympathize. I have a crushing pain around my middle at the bottom of my ribs, and up and down my spine. All therapies and treatments tried. One failed operation.
I look OK 90% of the time. I don't have weakness in my legs. So most think there's nothing wrong. Or that I'm faking. what possible benefit is their for faking?
I have to tell you, most likely, you'll have to live with a certain level of pain. Unless you find a solution. If your pain is as intense as mine, there's nothing you can take or use that will relieve the pain, that will let you live a reasonably normal life.
I've tried everything short of methadone. Including some kinda scary hi-speed cancer pain meds.
Flexing bones sounds serious though. Get yourself looked at. If not for yourself, for those that care about you.

[sabby]

I agree with all here, it's imperative that you see your doctor again. Maybe you can print out your initial post and then add things to it and bring it in so the doctor can read it. Sometimes talking to dr's can feel intimidating and we then "forget" something we thought was important to talk about. Been there, done that...hate when it happens!

I'm very concerned about you. I'm concerned that you may at some point have a physical injury that you may not be aware of if your not feeling pain properly or that maybe the pain manifests as something else or somewhere else other than where the injury is.

I'm sorry you are going through this and I hope you can find the strength to get back to the doctor very soon and get some testing done. Wishing you well!


sabby