Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Autoimmune Rheumatiod Arthritis???

Where's the SI and how do I know if I've got an SI problem? I've got pains in my butt but don't know if it's that or not.

Sue, like you I just want a med that's going to work. I also had inflammtion of the deodenum. Got scoped because of terrible pains in my stomach. Was diagnosed with stomach spasms. don't know if that's really what it is or not. It comes and goes. Hits all of a sudden and the sharp pain can bring you to your knees. I have GERD really bad too.

I think theres many unknowns in rheumatology. Unfortunately, most rheumys try to put you in a box and I don't think theres a box yet for me.

Sue - I still haven't found the post but here's the info again:

Although my symptoms started out affecting my axial joints which pointed to possible AS, I didn't have any spine involvement. In addition, the butt pain was my coccyx not my SI joints. I'm B27 negative. These were all pointers away from AS.

I'm seronegative and for many months had no involvement of either my hands or feet so RA was ruled out at first. In fact, the diagnosis requires involvement of either hands or feet at least.

I'm still seronegative but the arrival of stiffness and pain in finger, thumb and wrist joints made a difference to the diagnosis. I'm still seronegative but I do have a positive ANA (common with most inflammatory arthritis). Also, the affected joints are symmetrical throughout - both shoulders, both hips, both knees, both hands etc. Finally, I get episcleritis rather than iritis or uvitis.

Interestingly, I'm not a perfect fit for either of them. Clearly I have inflammatory arthritis and my lab tests show extremely high levels of inflammation that no one can argue with. I'm satisfied that we can rule out AS because of lack of spine or SI involvement. My doc and rheumy seem satisfied that there is enough variation in RA that my non-standard presentation is still adequate for a diagnosis.

Still - that's why I'm interested in comparing with CC.

hi jewelz,

if you see a PT or physiatrist, they can show you where your SI is. if you google sacroiliac joint images, you can see it as well.

essentially, its where the spine and the pelvis come together and then the joint within the pelvis.

if you feel just above your butt and just below your back where its kind of bony and lumpy feeling, or maybe that's just because mine's inflamed, not sure i remember anymore what it feels like when its not inflamed. then you follow along the ridge of the pelvis and then down along the inside of the pelvic bones. mine hurts all along there. initially it was only in that top "dimply" area but now it seems to go down further into the pelvis. i'm going in for cortisone injections into both sides of my SI next week. its been more or less continually inflamed for about a year and a half now. the last time it was like that, the cortisone shot did wonders, for about a year, which sounds pretty good right about now.

though i still think, for me, spondy can't be ruled out, and the current rheumy has me down as seronegative spondyloarthropathy. he also admits to not knowing 100% what kind of arthritis it is and is encouraging me to go out of town for a better dx.

it is possible that we have a different form of arthritis that doesn't have a name yet.

in science, things should add up, and when they don't, it means we just don't have it all figured out yet. but the answers are there, we just need to discover and understand them.

we'll get this figured out yet.

or at least we'll find a way to treat it.

like with my stomach. neither the doctors nor i ever tried to determine why i have gastritis; the drugs and diet modifications work for me to a large degree. so long as i also stay away from caffeine, NSAIDs, and any other drugs known to bother the stomach.

however, if the medications for the stomach were expensive and/or potentially dangerous, then i probably wouldn't have been treated so readily. that's the only reason i can imagine that getting treated for my arthritis has been so painstakingly slow.

but slowly too, we have to build our case. not that it should be that way, but if it is, so be it.

we'll get there. (hopefully you can tell, i'm trying to convince myself as much as i'm trying to convince you)

thanks wendy for taking the time to go over that again.
i think its so helpful to hear everyone's story.
especially for people still looking to connect all of their own pieces.
and to understand what everyone is going through.

thanks again,

You're welcome, Sue. I find it interesting that my symptoms continue to change and develop and can see that there was no way I was going to get an accurate diagnosis a year ago. The literature on RA stresses the importance of early diagnosis and treatment to limit damage. Some literature (out of Britain) talks about that first 3 months window being critical. For someone like me, that would be impossible because there's no way anyone would have diagnosed me with RA a year ago.

Ok, thanks everyone for the information. That's what I thought it was, but wasn't sure and she didn't seem sure at all. I know Rheumatiod is "cousins" for lack of a better word with AS, but I was getting confused (and these days, it doesn't take much to do that!) and figured I'd come here for clarification....

And sorry it took me so long to get back on and respond...The kids got the best of me, along with a virus on my computer....fun stuff huh?