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02-02-2017, 06:23 PM   #1
Sophabulous
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Sacroiliitis Question

Hi all

I've suffered lower back pain/stiffness at varying degrees for many years. After being diagnosed with Crohn's last year I started to pursue it further. It's taken me a while but I've finally had an X-ray in December but when I saw my IBD nurse today she said it was clear and is ordering an MRI instead?

What was the point of the X-ray? Surely it's more cost effective to just skip that step altogether if it isn't entirely reliable? She said that the MRI would pick up more detail and therefore more likely to be able to diagnose or rule out completely. I love the NHS but it does baffle me sometimes!

Has anyone here ever had a clear x-ray but then been diagnosed from an MRI? I know something is going on in there and if the MRI doesn't pick it up then I'm at a loss! The pain is hand on heart worse than the Crohn's pain. Im not imagining it, and it very much 'flares up' for a few weeks then settles down. It definitely does not feel muscular.

Interested to hear others experiences.

Thanks in advance!
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Diagnosed severe Crohn's of the Duodenum, Terminal Ilium and Cecum.

Currently taking Azathioprine 100mg, Esomeprazole 40mg, B12 Injections and various supplements. Azathioprine failing so awaiting next steps
02-02-2017, 06:28 PM   #2
Maya142
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It is very possible to have a clear x-ray and then be diagnosed with an MRI.

The x-ray shows only damage from AS/spondyloarthritis (which is what would cause the sacroiliiitis and is associated with IBD). It takes years for damage to occur - it can take 8-10 years. Of course, it can happen faster, but generally it takes years, not months.

They do have to check if the disease is advanced enough to show on x-ray, which is why they do x-rays. If it is, then you wouldn't need an MRI and you would be diagnosed with Ankylosing Spondylitis specifically.

Since you don't have sacroiliitis on x-ray, you can't have AS, but you can have spondyloarthritis. The MRI will show inflammation - that does not take time to show up. The MRI does show a lot more detail but it is normal (and is part of the protocol) to do an x-ray first.

Typical symptoms of SpA are back pain, morning stiffness and pain that gets better with movement and worse with rest. It often affects the SI joints, but it can really affect any joint.

Both my daughters and husband have AS. They find that heat and ice help with the pain a little. A TENS unit also might help.

AS and SpA are very painful but they can be treated - usually in an IBD patient, anti-TNFs would be used to treat.

Good luck!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
02-02-2017, 06:45 PM   #3
Sophabulous
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The symptoms of SpA are back pain, morning stiffness and pain that gets better with movement and worse with rest. It often affects the SI joints, but it can really affect any joint.



Thank you for clearing that up! The way it's been done made no sense to me at first, although I still wonder why they don't MRI in the first instance rather than do both if the x-ray is clear? Then again I don't know the true costs etc.

I've been having lower back pain for about 6-7 years now so if i do have an issue there it's probably too soon to see on an x-ray.

What you say makes perfect sense though, it's worse when standing stationary, but gets better with movement, especially bending/flexing the affected area. However if I'm on my feet for too long it goes the other way and I'm in more pain than ever.

I also get extreme tightness in my right hip. I see a chiropractor who loosens off the muscles but she insists the inflammation and therefore problem originates in my lower back.

I have a memory foam mattress which is brilliant and I wake up feeling fine. If I stay at my partners who's mattress is much firmer I'm ridiculously stiff and sore in the morning. It usually eases off eventually but it gets worse before it gets better.

Hmmm, let's see what the MRI shows then!


02-02-2017, 06:50 PM   #4
Maya142
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It's cost - MRIs are very expensive and they (insurance companies/ the NHS) try to avoid paying for them.

It also depends on how aggressive the SpA is - in some people, it never progresses to AS and you never see damage on an x-ray. Other cases are more aggressive and it does progress to AS. With my younger daughter, we saw radiographic sacroiliitis (damage on the x-ray) in 3-4 years and her diagnosis was changed from juvenile SpA to juvenile AS.

Hip pain is also VERY common with SpA. Hips are very often involved but hip pain can also be referred from the SI joints. You would need a doctor to tell you where the pain is actually coming from (after examining you).

Chiropractors are generally not recommended for AS - we have been told many times not to take my girls to them.

Physical therapy can really, really help but I would guess you need a diagnosis first.

Good luck! I hope the MRI will give you some answers.
02-02-2017, 07:07 PM   #5
Sophabulous
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It's cost - MRIs are very expensive and they (insurance companies/ the NHS) try to avoid paying for them.



It also depends on how aggressive the SpA is - in some people, it never progresses to AS and you never see damage on an x-ray. Other cases are more aggressive and it does progress to AS. With my younger daughter, we saw radiographic sacroiliitis (damage on the x-ray) in 3-4 years and her diagnosis was changed from juvenile SpA to juvenile AS.



Hip pain is also VERY common with SpA. Hips are very often involved but hip pain can also be referred from the SI joints. You would need a doctor to tell you where the pain is actually coming from (after examining you).



Chiropractors are generally not recommended for AS - we have been told many times not to take my girls to them.



Physical therapy can really, really help but I would guess you need a diagnosis first.



Good luck! I hope the MRI will give you some answers.


Thank you, that all makes sense! I only paid to see this chiropractor a couple of years ago as she helped so much with my mum's bad back. I've read quite a lot since then largely discrediting them.

I must admit, the stretches she gave me do help with the hip tightness but I don't think we ever addressed the route cause. Hopefully this will sort it out one way or the other!




02-02-2017, 07:09 PM   #6
Maya142
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The recommendation for chiropractors is mostly for people who have advanced AS. I'd just be careful with manipulations - stretching is fine and in fact, it is very good for you!

Spondylitis.org has lots of good info and even has stretches on the website (with pictures), specifically for AS related issues.
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