Hi there! So this is my first post, (I may or may not have been lurking for a bit...) and I wanted to introduce myself and also ask a question or two about SpA. I promise to keep this short! I sometimes tend to ramble a bit...

I'm Clover (Female), 19y/o and live in Michigan. I'm an EMT, plan on becoming a Paramedic.

I began having lower back pain when I was about 15/16, but it came and went and was not very severe. Most people told me I was crazy when I complained about it and said I was too young to have back pain. About two years ago it became more frequent, and I also began having some joint pain, primarily in my right shoulder, left hip and left knee. (I have had it in other locations too, those just seem to be the most common.) Around that time I was also going through a period of depression, and my GP seemed to think the pain was related to that.

Around Summer/Fall '11 the pain began to significantly increase. Instead of just the normal pain coming and going it began to affect me the majority of the time. The pain has become more focused near the SI joints, but I also get mid-back pain and neck pain. I would wake up with some stiffness, but the worst of it was at night. (Still is) I noticed that the winter weather did not help, and when I exercised I had less pain. I did lose about 30lbs over the winter, (now maintaining a healthy weight, I only have about 10 more lbs I would like to lose) and was hoping that the weight loss would help some with the pain, but it has only gotten worse.

This takes us to Feb of this year. Over the course of one week I had THE WORST pain of my life. My back hurt so badly I could hardly move. I couldn't sleep at night at all, and was crying because of the fatigue and pain. I took ibuprofen but even with that I still had terrible pain. The next week I called a Rheumy to make an appointment.

My first appt. was in early March. I explained my symptoms, the onset etc. I had been put on Iron supplements in the fall because of anemia (which still don't know cause), and was also taking vitamin D. I have had for some time now digestive issues, but I honestly cannot pinpoint when that began. I just know it has been longer than just a few weeks/months. I had (apologies for the fun graphic-ness) loose stools with mucus, abdominal cramping, and also occasional periods of constipation. (Or I would feel like I NEED TO GO NOW, only to have little or no waste pass.)

She ran bloodwork, and sent me for X-rays. I tested positive for HLA-B27, had elevated inflammation levels, but was neg for RA. The X-rays came back normal, so at my next visit in late April and she told me to start taking Aleve and had me get an MRI, as well as recommended me to see a Gastroenterologist for a Colonoscopy. (FUN.) I did the MRI but decided to wait on the Conlonoscopy, mainly because I didn't want to have to go through it if it was AS.

Okay so now up to today. She said my MRI showed no inflammation of the SI joint, and that it was normal. Since April, even with the last visit I have had an increase in my back pain, to the point where I cannot sit still for more then half an hour without moving in my seat like a four year old. Nights have been bad, and I told her as much. She told me that my symptoms are indicative to a Spondyloarthropathy, but the lack of evidence on MRI would not point to AS. She believes that it is likely I have IBD, and if I do that it would point to Enteropathy Spondylitis. So my next step is to get that checked out. She also gave me a scrip for Physical Therapy to try and help with the pain.

That's basically it, sorry again for the length. What I wondered is if anyone on here has had the MRI not show inflammation while still having major SI pain? (The day I went was a relatively pain-free day, it was warm and sunny. IDK if that would make any difference.)

And also I know this is mainly for AS but it seems to be the only major SpA forum out there, so I apologize if asking about Enteropathy is off-base. (With what I've read the spinal symptoms can be similar.) But does anyone have Eneteropathy and is that similar to what my issues have been?

Thanks in advance for responses, I'll be happy to answer any extra questions that I can if it helps.

WELCOME, CLover:

You have PreAS (item 5) and sacroiliitis very often cannot be properly imaged on mri; better chance using contrast bone scan but the important thing is that YOU know where You hurt and do not really need to prove it to anyone else.

IF Your AS was the result of an ReA the instigating pathogen is long gone and You are left with Early AS as the result of Your genetic predisposition.

The IBS/IBD is the clincher but the physician is actually telling You to take ALEVE?!!! If You have IBD this is ASKING for trouble and even if it is "only" AS these drugs (NSAIDs) can greatly accelerate this disease, from my own experience.

And to help a little more with diagnostic criteria in addition to Professor Ebringer's, I would add just a couple:

Do You have IBS/digestive issues?
Are the pains asymmetric or symmetrical?
Have You ever had iritis?
Or plantar fasciitis?
Are there X-ray changes to Your SIJs?
Do You awaken with 'morning stiffness' that relents upon hot shower or movement?
Are Your pains cyclic or constant?
Do NSAIDs seem to relieve the pains?
Noisy joints (crepitus)?
Have You ever had some degree of hypermobility?
Any blood relatives been diagnosed with chronic UC, AS, PsA, RA, or any other chronic inflammatory disease?
When You eat, must You drink much more than 'normal' people?
Dry eyes (common conjunctivitis), parched often--thirst?
Any common or intermittent psoriatic lesions--scaly or pustular?
Any 'sausage digits?' Toes?
Pain at the 'core' of Your body so You cannot turn at the waist so easily without feeling like You have a cactus for a spine?
Trouble getting up from a seated position?
Night sweats?
Ribcage pain, especially at sternum?
History of pneumonia?

Even several positive answers cannot be definitive, and it is not likely that anyone with AS will have experienced all of these symptoms, but these are just a few more of the indicators that people can use to determine whether they ‘might’ have AS.

Good luck with Your own therapies; You will have no trouble if You can stay away from the MIS-treatments.

HEALTH,
John

ME! (can you see me raising my hand! )

i developed SI joint pain very abruptly in 2000 (2 years after the neck/upper back and wrists started). it was and is like a roller coaster. ok in between flares. terrible during flares. when it flares, i can barely make it from the bed to the bathroom on my husband's arm. the rest of the time, i can live with it, for now.

i can't make it for an MRI when its flared; heck, i can barely make it to the bathroom during those times. so definitely not going to go out and torture myself.

thus, nothing on an xray.

very little inflammation on the MRI (was pretty good the day it was finally done - only showed some inflammation where the L-spine and SI meet).

"arthritic changes" via CT scan.

my old rheumy tried to convince me it was osteo, but i knew that osteo didn't fluctuate so violently. flares like that could only be autoimmune / autoinflammatory, and that's what it turned out to be.

i did have a nuclear bone scan, and it showed inflammation where i hurt the most at the time which was my feet, sternum, and where the L-spine and SI meet. but on another day, it would have been different. i wasn't flaring at the time. i now know in hindsight that i should have gone during flares, though again, how could i, when i can't even get out of bed?

i finally had enough of it after a dozen years and so flew to another city in another state to go to a doctor who's papers i had been enjoying reading. he seemed very knowledgeable and i figured he'd know better than most if i had a spondy or if not.

in less than a minute of our meeting, he knew i had a spondy. then spent the next hour going over the symptoms in detail to determine that at this time, undiff spondy seems most likely.

my main symptoms have been:
enthesitis
spine, rib, and SI joint inflammation, pain, and disfunction
gastritis and IBS

more minor symptoms:
dry eyes
mouth sores
a few odd rashes
fatigued, tired, and sore when i go into a flare
the minor symptoms seem to be precursors to the flare

john (dragonslayer) gave you a good list and good advice.

you can see below my name what i'm currently trying.
better between flares
better at fighting flares
but i still flare, thus don't have it figured out 100% yet
probably never will have it figured out 100%,
always a work in progress

i developed the gastritis / IBS when i was 29-30 years old
i developed the inflammatory arthritis when i was 35
the other symptoms (eyes, mouth, skin) kind of crept in with time

though the disease is probably worse,
i have better doctors and better treatments now,
so it all balances out,
for now.

welcome!

Thanks both for the info! Pretty much since that week in February I have been doing a lot of research on AS and the related SpA's. I didn't see anything about the Nsaids being harmful to AS but I do know that overuse and prolonged use can cause the whole stomach bleeding thing. I don't take more than directed each day, and it does help some, (at this point I take whatever relief I can get...) but I have already started to feel the tolerance to it build.

I appreciate the info about the MRI not always showing sacroilitis though. I was at the point where I truly thought I had AS and was about to have the evidence and official diagnosis. So when she said it was normal I was pretty floored. She believes I have pain, and seems to ask a lot of the questions that categorize SpA's, but I think the lack of MRI/X-Ray evidence made her put it aside. (Also she said that MRI is most sensitive test so implying that if it wasn't on there then it isn't severe.)

But as you said the Gastro stuff will really be the determining factor as far as what I do next. I forgot to mention too that I've had some difficulty breathing, like taking in an entire breath, (you know that satisfying full breath feeling?) so she wrote me up a scrip to get my pulmonary function tested. It's not all the time but something I've noticed over the last few months.

Today was just was a little frustrating, simply because I was hoping to have a solid answer after the visit. But oh well, onward and upward eh?

Hey there,

I can relate to your experiences with test results. I remember getting a blood test to determine my levels of inflammation but they came back practically normal. At the time of the blood test I was not in very much pain but my mum had driven me all the way to get the test done so I went through with it. Even though I have struggled so much to this day, my mum still has no idea about the severity of this. I think she often looks at those results and chooses to not listen to what I have to say but anyway...

I guess what I'm trying to say is maybe you should try getting some tests done when you're feeling at your worst and this should probably help with a diagnoses.

I Haven't heard of very many people my age with AS. Hope you find the right treatment and I'm sure you'll find a diagnoses sooner or later.

good luck,
Seb

took me 12 years and 5 rheumies to get dx'ed. but that's because mine was so variable and because my enthesitis was so bad (the rheumy that finally dx'ed me told me that was his belief).

but you are so much younger. much harder for them to pin in on "getting older".....once i was well into my 40s, it became easier and easier for them to do that. but for you, the dx should be so much easier.

if you have GI stuff, which sounds like you do, then hoping they'll do a colonoscopy. read in a few places that everyone with a suspected spondy should have a colonoscopy done all the way up into the end of the small intestine (the ileum). that anyone with a spondy, even without the full blown IBD and even without IBS symptoms, will have inflammation and possibly small "crohns-like ulcers" there. i did, and it helped nail things down for my dx. a good GI doc should help in this regard.

i was told my my gastroenterologist that nsaids were the only other thing that could do that to the gut. and i hadn't been on them, so we could rule nsaids out, and spondy in.

when john talks about what the nsaids can do, not only can they cause ulcers in the stomach, but in the intestinal walls as well. leading, some think, to leaky gut, leading to spondy, or making it worse. my GI doc's comments seem to support that.

as for the trouble breathing, not sure a pulmonary test will show anything, but have it done anyway. a lot with spondy have inflammation of their ribs (costochondroitis) which makes the ribs quite painful, and make taking a deep breath difficult. my ribs are always a little sore and sometimes very sore. i haven't noticed the difficulty breathing myself, but a lot of others here have. i do tend to breath from the diaphragm; maybe a response to my ribs? there are tests your rheumy should do to measure chest expansion. and there are exercises you can do along those lines. you can search for those.

Hello Clover,

Glad you found us, appears from you story you may be one of us with AS. Sorry to hear that, but if you have AS this is the best place to find.

For many of use, took a while for diagnosis, until you have lived with some pain for a while, the AS will not necessarily show up on x-rays.

There is a lot to learn about AS and many treatments from meds, diet and alternatives. It is worth investigatig to see what works best for you.

Keep on Kicking!

Tim