Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group what if they don't "see" AS??

y'all are so resourceful...thanks so much for the links and info.

well, it sounds like i must have the pre-AS thing, or "undifferentiated spondyloarthrapy". i think that's probably where my generic "arthritis" diagnosis comes in to play.

something tells me, though, that after this pregnancy, once they take the films, they'll see a whole lot of damage done. this has definitely been hard on my body, and i'm having all the classic AS symptoms now, whereas before i didn't.

it is interesting, though, that i don't respond so well to NSAIDS. i mean, it's not like they don't work at all...but they just barely take the edge off the pain. and at night, when i've been awakened at 2 or 3 am with intense pain, they don't work much at all....but nothing does. i think sometimes the pain is just too intense for the NSAIDS, vicodin, and muscle relaxers.

the pain feels like it comes from the muscle and fascia in the area where my lumbar spine and sacrum meet. it's like there's all this inflammation that causes muscle spasms and trigger points in there, which then pull on all the surrounding muscles and tissues, causing tightness all up and down my right side of my back and down into my leg. ugh. i've tried to describe this to different health care providers, but nothing has ever worked well except for the cortisone shot. but even that, which i had done 2.5 weeks ago, has seemed to stop working. usually it lasts 2-3 months.

but yeah, dragonslayer, you are right. after my baby is born, if this guy doesn't act more aggressive in treating this, i will find a different rheumy. he told me last year that if i have AS then it's pretty mild. well, maybe he's right. but it sure doesn't FEEL mild, you know? it hurts like hell and has for 2.5 years. and i'm really tired of it...i want to be able to care for my baby without focusing on my pain. i want to go to nursing school. i have all these dreams, and all these docs seem to think it's okay to hurt all the time. no more! i'm so done with that attitude!

Hi Deanne,

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it is interesting, though, that i don't respond so well to NSAIDS. i mean, it's not like they don't work at all...but they just barely take the edge off the pain. and at night, when i've been awakened at 2 or 3 am with intense pain, they don't work much at all....but nothing does. i think sometimes the pain is just too intense for the NSAIDS, vicodin, and muscle relaxers.

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In my opinion, that qualifies as a 'positive response' to NSAIDS. When we have a lot of inflammation causing intense pain, for many if not most of us, NSAIDS will only put a dent in the pain... take it down a notch. Rarely have I heard anyone say that NSAIDS help significantly. And certainly not in the middle of the night. If you are going to take them (after pregnancy), it should always be on a full stomach after a meal and with a glass of water.

So when you answer that question again, be sure to state something along the lines of ... 'yes, they helped a slight bit but just not nearly enough to be useful which would be truthful, by your own description. All the clues will help total a diagnosis and any knowledgable Rheumy should agree that biologics are proving to be most helpful if prescribed at the earliest stages of AS progression.

I'd also vocally communicate your disagreement with their term 'mild'. How fast would they like to see fusion before they deem it otherwise?

Best of luck,
mig

hi mig,

i did tell him that (that the ibuprofen helps somewhat but not really). i'm not sure what's wrong with my rheumy. maybe it's because he's an HMO doc?? i don't know.

thanks,

deanne

your doc sounds like my VA doc!! "You have undiagnosed back pain if we don't see damage on your xrays!"

my PCP doc told me "Take these pills & come back in a year!" grrrh! makes you wanna cane him!!

that's how my docs and NPs have been, too. i've even been accused of "lying" by a Nurse-Ratchett type of evil woman (i never went back there, either). why would i make this stuff up...that's just crazy talk.

i don't understand why people get into health care if they don't have compassion, or an interest in finding out what's going on with their patients. i swear i'll never be a nurse like that.

that word

M I L D...as in 'oh you've got a mild case'

well twenty years/ thirty years later turns ya into a crippled up old dude/dudette

is you don't think it's M I L D...run fast

aloha ben,

note to sue ...please try the search mechanism here or just troll though an hour's worth of old posts to find out who's who and what's what....all of those diagnostic criteria have been posted many several times often in the past....these archives go back to about 2001, a lot of info, become an expert;
have depth of understanding and a firm grounding when you call that dude out.

excellent advice...that's what i've been doing for the last 10 days, instead of all the other things i'm supposed to be doing.....there is so much here, i've found a lot of stuff (and the search engine by subject or person is great) but i do feel i am also definitely missing other things. if i ask a question that's already been addressed, i do apologize. i've been trying hard not to do that, but there is so much to take in. i do want to get to a new rheumatologist ASAP, but also not until i feel fully educated...you all are helping me in that department. thanks, sue

Deanne, this assessment that if NSAIDS don't work it's not inflammatory arthritis is so much bulls**t. Back in the day, before I went on prescription NSAIDS, the only way I got relief was to pop 4 extra strength advil at a time - upwards of 12 or 16 every day!! When my rheumy found out he almost flipped and insisted I go on a prescription NSAID. The only one of those I ever responded to was Vioxx and it gave me a burny tummy so I had to go off it. The others never helped. Barely took the edge off the pain.

These days, Celebrex helps, but only since I went on Remicade and even then, if I'm bad enough to need Celebrex it takes 400mg to do anything.

If your doctor insists on this, I would suggest printing off this thread to show him the truth of the matter. NSAIDS do not always help with pain such as we deal with.

As far as I'm concerned, there is no such thing as a 'mild' case of AS. And in women, this is the assessment occurs far too frequently because we don't necessarily have the more severe spinal deformities that seem to happen in many men. That doesn't mean our disease is less severe, it just means it presents differently. Indeed, one study I read (don't ask, because I don't remember which one) it was stated that in women the worst symptom of AS is often our pain levels. Which, as you know, is debilitating when uncontrolled.

Hugs,

kat,

actually what the paper said was that iff someone responded well to the NSAIDS then it could be spondyloarthropathy and would rule out fibro, that since fibro is not an inflammatory disease, it wouldn't respond to the NSAIDS, but spondyloarthropathy might. not the other way around. sorry if i didn't make that clear in what i wrote.

sue

thanks Inanna...you have been so supportive and helpful to me. i really appreciate it.

i was doing the same thing for a few months last year: popping 4 advil at a time, 3 times per day. when my nurse practitioner found out, she freaked and referred me to all these specialists. well, then i got the cortisone shot and did great for 3 months, then got pregnant (and immediately flared, like a couple days after conception), and now i'm where i am today.

*le sigh*......i'm definitely going to push for the Anti-TNF thing once i'm done breastfeeding my little one. sounds like these meds are most effective when started early on in the progression of the disease.

thanks again!