Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Help Reading MRI Results Plz?

Holly - I didn't mean to scare you!

Remember that it said "mild"!!! It's more than you would expect to see in the average 36 yo.... but remember that I haven't seen your actual MRI films... I like to look at those *first* then read the report after, just to check that I can still read 'em!

I do agree with you and your rheumy - you need to go see a good PT. I would be assessing your posture, see what is tight and what needs to be stretched. Then I would be teaching you some postural correction techniques and getting you to work on your core strength. A good PT should be able to help with getting some general fitness work into your programme too. Of course, for this to be happening, you will need to have some good management of your inflammation and pain.

I believe there is also a place for some manipulative therapy in some folks with AS - there may well be a mechanical component to some of your spinal pain as a secondary effect of the inflammation. Like tasting lemons, the theory is "suck it and see..."

Do you swim - or at least, are you happy in water? You might find that you can get the PT to organise a pool programme for you that incorporates strengthening, stretching and fitness in the warm water of a hydrotherapy pool. The warmth can help with your pain too...

I don't think it's possible to *undo* the sort of degeneration that your MRI is showing, but you can keep all the things that support your spine strong, and that will minimise the physical effects of what is probabaly a process that has been going on quietly for some time (no)thanks to the Spondy Monster.

Don't have a lone pity party when you can have one here amongst friends - we all like a good drink and a knees up!

And when it comes to getting angry at the Spondy Monster - I say - don't get mad - get even! Don't let it win! Kick it down and then kick it hard as many times as you can! Yeah! Take that SM!

I'll post more later when I'm not trying to beat a deadline but just wanted to say thanks again and I'm looking at this differently today. Not as reactive.

Kind of a 'react first-think later'? LOL. Easy to freak out, but a bit of time after the shock and you get less freaked out. Time to get to the PT. Like Louise said, learn some posture measures and keep your core muscles strong... At least it was mild and there is room to change the outcome with some strengthening.

Hope you make your deadline!

Yes, I'm with rumble...Louise knows her business!! I would talk with her about it...

Yeah. I think sometimes even happy, smart & somewhat sane people like me (or at least, that's how I see myself) get so overloaded that they can't help but shut down mentally and react purely on instinct. I've got too much on my plate. It is overflowing. Some of you know what I'm talking about -- my marriage and work feel like they are falling apart, I struggle with how my pain affects my children, etc. Have growths on my back to be biopsied, some new funky illness to be tested for (IC), my IBS is flaring. Getting tested for MS. I don’t sleep more than 2 or 3 hours a night EVER. Blah, blah, blah. It's hard sometimes for even the goofy "smile all of the time" people like me to just get by.

So I got mad when I heard there was yet another obstacle in my way. I can overcome it (with help!) but I was just in shock and frustrated that one more thing was thrown at me. And for once, it was something I did to myself. Yes, you read that right. I made my neck & upper back gimpy. I work from the couch from 7:30 to 4 every day. I make myself get up to do things around the house, but the last time I “stretched” I pulled a muscle and ended up in the ER. That was a year ago. I haven’t stretched since and I gave up trying out of fear. So yeah…my neck & upper back = totally my fault.

Lesson to newbies -- no matter what, get your butt off the couch. In the beginning, I kept trying and trying to move, stretch, do very small-scale exercises, but would scream in pain sometimes and take days to recover. I admittedly, threw in the towel. I tried PT 3 times (one was a water-therapy PT) and all three times, I was beyond crippled by it, but mostly because they didn’t understand what AS was and had me doing things that were extremely bad for me. Once my pain is under control, I’m going to go back to PT. NO QUESTION. But to ease some of my fears, I called and asked my doctor if she would write a note that explains what I need so that they don’t cripple me worse – and so I can stick with it. I need to.

I am so glad this is all mostly mild and that I can take steps to improve. I just need a day or two to be angry about it. Then, I'll get over it, add it to the list of stuff to deal with and get back to my job of trying to move the mountains that are standing in my way. I'll move them. With help and time.

Louise - you are awesome. I'll reply more later. I do have a huge ghetto pool – “Holly speak” for above ground monstrosity in my backyard - that I can use! It isn’t heated, but I’m in Texas so it won’t really be cold for long – once I know what I’m supposed to do, I’ll do it. And I want to start slow. I tend to jump in with both feet and overdo it with everything in my life. I think the key here will be to do a little each day until I’m stronger, then add to it. I’ll even join the KickAS fitness club.

Rumble - I made the work deadline. Whew. But now, I have to find a way to get my butt to my 6 year old's violin concert. He is 1st year, but has already caught up to the 2nd year kids and will be the only one in his class to stand up and play the songs the 2nd year kids are playing. One of the few things I do these days is work with my kids musically and artistically (we play a lot of instruments around here, and I'm an artist by profession -- it's easy to get them interested). So I can't wait to see him up there playing, knowing that even when it hurt like heck, I helped him practice and that I'm part of why he'll be beaming with pride. And I will be too, of course. My kids are the best part of me, and the very best part of my life. ;-)

I'm rambling, but I'm still sort of a mess today (obviously). I mean, duh, I knew I had AS though I try to deny it. But I kept thinking once I got back on biologics and got my pain under control, I'd get better -- that only the small amount of damage that was already done would be with me forever. It devastated me to know there was any more damage, even if it was mild. I HAVE to get back to being me, full time. I'll work my tail off to get there. I just need a day or two to be angry about it, I guess. And learn to accept it all over again.

Thanks again. I'll post more later. Less rambling, hopefully.

i couldn't help but notice your story about your pulled muscle from "stretching"; i thought i was the only one who did this (til i heard others on here share similar); tore my rhomboid this way, tore the IT/TFL bands this way. but was lucky to have PTs that knew first you have to let it heal, help it heal with things like heat/ice, ultrasound, etc. then once its out of the accute stage, then you do the gentle exercises, and if the exercises flare it, you go back to the healing stage. was lucky in both cases. and for me it took many years (and its still not right) for the rhomboid to get better and a year for the IT/TFL bands to get better.

i've had other PTs, that basically just did exercises that would try to do too much before my body was ready, and each time it would only make it worse.

but i've found these things (for me at least) really don't recover on their own. i need PT to fix me, but gentle and slow, like i described above.

i think its a matter of finding the right PT, someone like louise!
finding someone who calls themselves a manual physical therapist might be a place to start.

now i can often fix these things myself by following what i learned in PT, but no way could i without all those years of PT.

PS and please don't blame yourself, no way for you to know, and you did try, you went to PT, not your fault that it made things worse. that's a shame that that happened, it didn't have to, but a good PT should be able to help you gain your muscles' strength back i would think. i was amazed how far things could be turned around for the good; like a neck so weak it was almost constantly in spasming to one that is much better now, and only acts up in flares.

i've learned that another thing that contributes to desiccated discs, of which i have a few, is muscle imbalances.

Thanks Sue.

I'm too tired to write more but for now... Thanks. :-)

thanks is more than enough!