Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Threw Back Out...Again

Hey everyone. So, this is the third time in as many months that I've pulled this muscle out while doing something seemingly innocuous, like scratching my head, playing guitar, or looking out the #%&@@!! window. It's between my left shoulder blade and spine. Hurts to breathe, move, etc. My x-ray showed vertebral squaring in my thoracic spine, and my neck is also all "messed up" (my self-dx). Is this sort of constant injury common with AS? It happens a lot with my Achilles tendons as well. And I think I already know the answer. I'm just so fed up with constant SI, low-back, neck, and ankle pain and injury. I know I should accept it in a way, try to view my life as it is and work from there, but sometimes it's hard to do. I'm only 35, and I've been dealing with this for 14 years already.

I'm not eating any starch, I'm doing PT and exercise, I'm taking my fish oil and vitamin D religiously; what else should I do? Right now I am taking muscle relaxants and lying on my heating pad. I plan to watch copious amounts of television as well.

I have a f/u with rheumy on the 18th. He did not put me on any medications (wants to avoid that, as do I), but perhaps I should try one?? I am allergic to sulfa drugs, so sulfasalazine is out. Leary of MTX. Recommendations? I have had rxns to Aleve (I am an allergic asthmatic as well, so I react a lot to things) and other NSAIDS. I do have some pred upstairs (for my asthma), and I could take some to calm this down, I suppose...

ANYway, thank you for listening. I had to call in sick, on a sunny Friday, and I have already used up all my sick time this year. If anyone has any cheese, it will go great with my whine.

Cheers!

I know what you mean about injuries. I keep injuring myself doing innocuous things too. I call is Fragile Body Syndrome. I'm at the point where I live in constant fear of hurting myself.

Unfortunately, I've never actually been diagnosed my a medico with AS, but I believe I have it.

I'm seeing the rheumy on Monday and I plan to ask him the same question you are asking, but I don't know if he will have a good answer for me.

I'm sure that Sue will chime in on this one, too.

I wish I had a better answer for you. And I wish I had a better answer for me. And Sue.

Karen

Check out the radon therapy threads in the Alternatives. Lots of success stories.

Brad

hi molly,

karen was right about me chiming in
karen and i have "compared notes" over the last 6 months or so,
and i know for me i "injure" tendons and ligaments....
for the last 10+ years, i've worked with orthopedists, physiatrists, and PTs (and a podiatrist) who have dx'ed tendonitis, torn rotator cuff (a simple thing? followed by swimming), plantar fasciitis, pulled IT band (overstretched it and pulled it where it connects to the trochanter), torn cartilage or ligament in ulnar wrist (from pouring a fairly heavy pot of water into the sink...heard that one "snap" and then couldn't rotate hand, etc), pulled bicep tendon (from pulling a cart from the parking lot into my work office to try to save my back from carrying heavy loads) etc....who does these kinds of things?

and then the SI.....typical to others here....no fun...

these docs have been good at dx'ing the injuries and "putting me back together", but no one knows why i do what i do....

one physiatrist thought i had an arthritis that attacks the tendons. my current physiatrist thinks its gotta be some kind of arthritis. i've stumped 3 rheumies so far. rare collagen disorder has been ruled out because i'm not hypermobile and they didn't start til i was 35.

is it AS? something else? only time will tell. i'm also going to an endocrinologist. i was so hopeful at the march rheumy appointment and then so disappointed; now i'm more wait and see, prepared for the deadends, but keep on trying....

what i do to manage the symptoms, lots of ice and heat....more ice than heat, but contrasting the two the best thing for me....and a muscle relaxant at night and when needed...and then trying not to oversit or overstand or over do anything else.....exercise when i can.....even if i have to ice or heat before and after.....walking, biking, swimming (swimming only if i don't have any current tendon issues, as swimming will make them worse....has happened a few times)....unless something is really bad......the exercise seems to help keep things stronger.....work with physiatrists and PTs a lot....trigger point injections into the upper left back (my first injury.....a quick motion followed by a shock up and down my body followed by muscle spasms to "protect" the "injured" soft tissue....but took a long time to get treated, so now a chronic thing).....also ultrasound seems to help heal things up.....the way i sleep makes a huge difference for me....flat on my back with ice pack under the SI is the only way to keep the SI happy....with a flat feather pillow is the only way to keep the neck happy....with ice pack under upper back only occassionally when its been irritated....the way i sit makes a huge difference for my upper back....i have a swopper chair.....a bouncy stool that sways side to side and front to back.....the way i sit in a car, on a plane also really matter for my upper back...a weird thing i did to the rhomboids/upper trap......i'm sure there are things i'm forgetting....over 10 years, you learn a lot from your PTs (if they're as good as my first 2) and docs.....now i can "heal" a lot of the stuff myself.....

if i can get a dx, maybe drugs or something can prevent these things from happening....that's really the main reason i keep looking for a dx.....otherwise, if i could manage the symptoms completely by the things i'm doing, i'd just keep on doing what i'm doing....but its not working.....i keep hurting new things.....i think it was the two things i did in 2006 that took 1 year and over 2 years now to "heal" that have made me realize, i can't keep on like this indefinitely....

sue

I don't really have any advice, but I wanted to say your all not a lone. I can relate to all of you. I have the same problem. It seems like I'm always hurting myself. I've hurt my thumb taking the straw wrapper off a straw, last Saturday night I fell a sleep on the sofa, and when I went to get up on Sunday morning I felt something pop in my knee, its been hurting ever since... My list can go on and on. It's really pathedic when you think about it. I also have problems with my Achilles tendon, bursitis in both hips, SI pain, along with many other issues. I have tried PT, but it was causing me more pain and caused me to go into a bad flare up. So PT is afraid of touching me.

I have had a lot of issues with my tendons. My Rheumy says that the type of arthritis I have is very simular to AS, but that it effects the tendons more and causes problems with them. From what he told me he has two other patients like me and he has not been able to control the inflamation in the tendons in any of us or slow down the athritis.

So far I have not had any sucess with the drugs slowing down or helping with this stuff. I keep praying for something to work! I also know I can't keep up like this either.

Kim

Kim,
Welcome to kickas!

I'm sorry to hear you are having injury problems also. what kind of arthritis does your rheumy think you have?

Karen

Thank you Karen.

Hubby and I have asked him several times. He has some big long word for it, which I can't remember. My husband asked him last time what we should say to family when they ask and he said to tell them its very simular to AS except it greatly effects my tendons and causes problems with them and he gave us a bunch of information on AS. So when people ask we just say AS. Truthfully sometimes I wounder if my Rheumy really knows!

Kim

Is it Undifferentiated Spondyloarthropathy?

Karen

I'm not sure. I don't recall the word undifferated being used. I'm thinking he might of said Inflammitory spondyloarthropathies but I'm not sure. I have a lot of problems with Enthesitis. I see him again on the 22nd to discuss if we are going to contine with Remicade. I'm going to have to try to remember to ask him again. I usually try to take someone with me because by the time I get out of the office I've seem to forget about a third of what he's said!

Kim

Hi Molly
You're not alone in your frustrations. Many here identify with what you are feeling. I hope that in it's self can give you some confort. I think my Rheumy is right in one respect, denial, many struggle with this and never really get past this stage. I have had AS for over 30 years and just this year I have started to except it. If you are still in PT, have your PT ultrasound your achillies when it is flared and see if that helps. AS is really a crap shoot so to speak and you're doing what you can. Don't do anything with the Prednisone until you see your doc though, it needs to be monitored properly. Make sure you bring everything to the table when you see your doc so he knows just how you are feeling physically and emotionally. A lot of times we have a tendency to leave things out and not "complain" when we see our docs, Not a good thing.
I'm sure you will find a lot of cheese to go with your whine here
Cindy