Joint Pain -PLEASE READ ME

Well I have to admit this is certainly discouraging. But, apart from being aware of it and trying to get dx'ed ASAP when we have symptoms, there isn't much we can do.

I'm on 20 mg right now, but what can I do about it, really? The alternative to taking steroids right now is getting sicker and ending up on the operating table...

:(... Man... *I'm going to insist on getting an MRI of my hips... and my knees... I'd say my ankles, too... but if I can just get my hips and knees done, that would put my mind at ease...*

Yeah... I'm really hoping the pain is just being caused by my back... with the whole bulging disc thing... and side effects from my medication...

I don't want to have AVN... :(... (I mean... I know nobody does... but... man, it'd just really suck to have something else go wrong with me... :()

Yeah... I knew about the risk... but I thought having a normal blood test... The whole thing about my alkaline phosphate levels being low, not high (which would indicate some problem with the bones) had reassured me. But...

You said your daughter's blood tests were normal, too? :(...

Buckeyeinfl said...
Celey,
I'm genuinely sorry to have caused you new anxiety, and it's entirely possible that this pain you're experiencing could be crohn's related. WE dismissed her joint pain to the disease too, but maybe she's just unfortunate...and as her Mom, I hate it for her.

But, the whole reason to have brought this issue to the forum is to shed some light on this risk. Please don't shoot the messenger...did you know about this risk before this conversation?? If one person is aware and more in tune with what's going on in their body, then this conversation was worth it. We've just MRI'd almost every joint in my daughter's body, except her hands/wrists and we're dealing with so much with her right now that it's a little overwhelming, but will do those in the near future. Her hips have come up negative, which is rare we're told, so we'll repeat those MRI's in 6 months just to be sure. Our insurance did not cover all of the tests, but to us, it was worth knowing what we were dealing with. But I would say, that if anyone gets a positive MRI in one joint, this usually is bilateral with steroid use.

I have heard of it, although I admit I hadn't done much reading on it. I certainly wouldn't want to "shoot the messenger." Like I said I think it's good that everyone is aware. I just know from experience the internet can be a dangerous place! Not long ago I had diagnosed myself with something online, and talking with the people on a support board just confirmed in my head that I had something based on symptoms and what I *thought* one blood test was showing. I got myself all worked up and VERY upset. Turns out I was dead wrong, and got a good 20 minute lecture from my doc about leaving the diagnosing up to him! LOL So while I think it's important for us to be our own advocates, and to be educated, we still have to remember that we don't have MD behind our names (well unless you are a doctor of course!). And the added anxiety and stress we can cause ourselves isn't healthy for us either.

Crohn's medications seem to come with a lot of bad side effects and risks. So I think it's good to be aware of them, but I truely believe we can't stress on it too much. Since we have to be treated somehow. Again, I hope everything turns out well for your daughter. Very unfair that she has to deal with it, especially as young as she is.

Hey peeps! Celey, I just wanted to throw a little tidbit out there...did you know that if I went and did an MRI scan of 100 healthy people that I would find an abnormality in about 90 of them? I know how terrifying it is to be in pain and to be scared and to just not know what's wrong; it's a feeling of powerlessness and that is always unsettling. Especially when you have information from the Internet at your fingertips! We are programmed to keep searching, keep learning, that is the blessing/curse of being human...but sometimes it takes a very focused effort and inner strength to remember when to stop searching, because we could send ourselves into a tailspin.

We are taught over and over in med school to look for horses, not zebras. Meaning, they teach us all the time about the weird, crazy, rare things that can happen to a person, and so we start looking for those things to happen. It's only when we take a hearty step back that we realize that our perception might be a bit skewed. For instance, remember the anthrax business back in 2001? When everyone was so petrified about white powder in the mail? I worked for the public health department back then and had to swab about 239487 boxes and pieces of mail that people had brought in because they thought they saw a white powder. 100% of the time, the white powder turned out to be just the residue of something white and harmless - packaging, probably. But all of these people were surrounded by horrible thoughts about the worst possible scenario and everyone just went crazy about it. Took a while for things to settle down, but they eventually did.

Anyway, just wanted to toss it out there again that there are always scary possibilities in life, but it does no good to tailspin into a panic over something that is really undetermined as of yet.

I am sorry you are in pain, and I hope you get some answers - real answers - soon.

Celey, I'm having more aches and pains too while tapering, if it helps any. The first 3-4 days I've noticed after coming down I feel kinda crappy! Then I start to feel better, only to have to taper down 5 mg more again! To start feeling crappy all over again! LOL What fun huh? I'll be going down to 20 mg on Sunday, hoping I'm starting to get down low enough to where some of this hunger will ease up. Still wanting to eat everything in sight! LOL

Hang in there, and I hope you start to feel better!