Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Do I have AS?

I have had worsening back pain for several years, with stiffness. Lately it's been really bad, the other night I was in so much pain I couldn't move, even to roll over in bed, and crying from the pain, had to wait for a housemate to come home and feed me pain killers so I could actually sleep. Ibuprofen helps but only slightly when the pain is bad.

I recently had some physiotherapy, just teaching me some stretching exercises. 8 hours later I had the pain episode described above. Not sure if it was the physio or what...

Try taking this quiz to see if maybe you have AS:

http://www.backpaintest.org/

How does your pain feel during the day after you wake up?

I had back pain at night, every night. It wasn't until other AS symptoms showed up that my doctors ran the tests that indicate that I probably have AS. I hadn't even heard of AS up to that point.

Good luck; I hope you don't have AS, but if you find out you do, you are at the right place for support.

The test says I don't likely have it. But other tests I've done previous have said yes.

I've had an x-ray which can back normal, but I hear it takes years for x-rays to show anything.

Pain is from the second I wake up, and I wake up multiple times a night but not sure if from my back or not. I also fall asleep randomly sometimes so think I may have a sleep disorder on top of everything else I have to deal with... The pain lasts all day, going down slightly when I move about lots, like walking, but some days the pain is too much to move about at all.

Here are some other symptoms that people with spondyloarthropathies have:

Enthesitis (pretty much any joint can be involved, when its really bad, we tear tendons and ligaments…but most doctors don't realize this is a very bad case of enthesitis / spondyloarthropathy and will often try to diagnose us with EDS (rare collagen disorder….LDN helped this one symptom more than anything else did for me)

Uveitis (I don't get this so I've been dx'ed with initially undifferentiated spondyloarthropathy, now just spondyloarthropathy)

Psoriasis (if its very bad, people are diagnosed with psoriatic arthritis, if its just a bit bad, then undifferentiated spondyloarthropathy, now just spondyloarthropathy or one of the other spondyloarthropathies)

Gastrointestinal Inflammation (for some this means IBD (crohns and UC) but for many of us, its not full blown crohns, but we still have inflammation of the stomach (gastritis or ulcers) and inflammation of the ileum (end of the small intestine) with small crohns like ulcers (found by a colonoscopy that goes up that far)….this causes bouts of constipation with mucus and bouts of diarrhea where we don't digest our food (undigested food, fat in stools, weight loss)

Flares (Some of us flare and then are better between flares, others say they are bad all the time)

NSAIDs may help (but side effects so can't take them long for many, plus they can really tear up the stomach and small intestine….my GI doc told me that the only other thing that would give me those ulcers and inflammation in my ileum besides spondyloarthropathy was NSAIDs, but in a pinch, a few Aleve over a few days can get me through it)

Prednisone may help (but again, side effects so not a good long term solution, but trying it to see if it works can be telling….to see what symptoms it takes care of)

Dry eyes (if not uveitis, then dry eyes are a common symptom)

Mouth sores (for me, its more like my mouth becomes super tender and even something as benign as a piece of toast will tear up my mouth terribly, like the tissue is inflamed….and my tongue pili become inflamed (they hurt and are red and about double in size, not too impressive looking, but they hurt)

erythema nodosum (this is a terribly itchy rash mostly on the shins; I only get this when I flare badly…..I even had erythema nodosum migrans once over my SI joint)

And then of course:

SI joint inflammation so we can't sit, can't stand, can't walk….

Neck pain and then upper back pain…..

Lower back pain (but for me that's due to the SI joint)

Rib inflammation (costochondroitis, etc)

Plantar fasciitis

Heel pain

It was all these things together that helped me get a dx;

Since I don't show evidence of fusing, just spinal damage that they can interpret as either spondyloarthropathy or other things, its the other symptoms that helped with the dx, though the joint pain (neck, SI, entheses) are by far my worst symptoms

I have Psoriasis, bowel troubles, dry eyes, and cramps in my left foot (on the arch) a lot like really bad.

I get weird blisters in my mouth now and then, on the roof of my mouth, which pop with clear liquid.

I just did that test too...........Apparntly I don't have AS either....whoa'd a thunk...................cripes

which is odd, cos I am fairly sure that I do have AS.....

Are there any other good tests I can take then?

It is a tricky business, diagnosing AS. That little survey suggests that I don't exhibit symptoms of AS. I was diagnosed with classic AS nearly 50 years ago, so know that I have it. You really need to see a Rheumatologist who will do a series of tests, however, don't be too optimistic about an immediate diagnosis. Many on here have waited a long time, some still waiting for diagnosis.
But start down the road with Rheumatology and be hopeful that you haven't got it.....

Best wishes

Showing inflammatory back pain (as opposed to mechanical or degenerative back pain) is a good first step. Here is a check list: http://www.nass.co.uk/about-as/getting-my-diagnosis/inflammatory-arthritis/

If you do have inflammatory back pain, then the next step is referral to a rheumatologist. If you haven't had it done recently, they will probably either do a sacroiliac joint xray or a lumbar spine and SI MRI - looking for either signs of damage or active inflammation (the MRI).