LUPUS UK
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MRI result ok....but why such bad pain??!!

I’ve had probs with my sacroiliac joints and previously been diagnosed a few yrs back with sacroilitis and narrowing and sclerosis of joint.

Recently had mri and has come back ok no inflammation. I’m feeling really fed up because obviously I’m pleased nothing seriously wrong as they thought may be AS but now I’m like well why do I have such horrendous pain and my lower back ceases up in the night and I can’t move??!

It did show some wear snd tear patches of upper cervical spine where I get pain too (I’m 39yrs)

I know with lupus u can just get joint pain without inflammation or joint damage, do u think it’s still joint pain because it surely can’t be just nothing!

My rheum has previously said he has pts with terrible back pain with normal mri.

He’s said in his letter that obviously it’s a good result but is aware that it doesn’t reflect the pain I am having so will discuss the result further when I see him in 4 wks.

It may be just my muscles? I see a rheum physio and she said my back doesn’t move from half way down my back. But i have really specific points of pain when u press on the si joints.

I’m confused and fed up, was just hoping it would show at least something that would explain the pain. I now feel as tho people ie gps are gonna be like well there’s nothing wrong with ur back!

How come there was damage on it a few yrs back but not now. I know it sounds silly and I should be pleased but u know what it’s like it just fuels the gps fire of ‘ well there’s nothing wrong!’

Thanks

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My sacroiliac problems are entirely due to muscular spasm and no MRI will show that. So I'd agree with your physio - and ask her what she can do about it. I get therapeutic massage to mobilise the spasmed muscles. Time consuming but it works to keep me mobile.

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Hi sara , the only thing that worked for me was a steroid injection under x-ray guidance. 3 years and that particular pain has not returned.

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But there’s no inflammation there? I’m on oral steroids daily for about 9 yrs?! Have about 2 depo med inj a year ish to try get on top of things if it just won’t calm down.

Rheum said about that under X-ray but that was before mri scan so I suppose if it’s not inflammation then it wouldn’t be necessary??

I only could stop my steroids for 2 days before mri so maybe that’s keeping stuff at bay.

Or maybe it’s more arthralgia so just pain and stiffness not inflammation. He has always said lupus doesn’t cause or always cause inflammation.

?? Just don’t know!!

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I've also had back and neck pain for many years (and I am only a few yrs older than you), which seemed to get worse after I got lupus. I also had a X-rays and MRI which showed only normal changes due to age/wear and tear. My pain is due to muscle spasm/tightness brought on by a combination of weak muscles(from flare and inactiviy) and poor posture, and has since improved after various physio treatments/exercises. The painful points at your SI joint could be trigger points caused by tight glute and/or lower back muscles. You physio will be able to assess you and tell you what the likely cause is.

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Well the rheum physio said straight off from looking at my back that it doesn’t move at all from half way down my back which I guess is muscular. The gp has said that my muscles are so tight in my neck and shoulders. Stretching them out when I’m sat down does help but I really struggle to do the physio 4 times a day with 2 little kids! So if I’m sat down I try to keep stretching. I take diazepam occasionally when it’s really bad cos I just cannot get comfy and want to just rip the top of my back off!

I just felt that the mri was saying there’s nothing wrong but I’ve had a read up on it too and it says mri’s aren’t particularly reliable for si joints. And I suppose it’s only saying there’s no inflammation but I have been on steroids daily for approx 9 yrs too!

Like I say it could just be arthralgia so that’s not nothing is it,it’s still causing pain. Just feel like maybe I’m imagining it or something stupid just based on an mri scan!

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"just felt that the mri was saying there’s nothing wrong but I’ve had a read up on it too and it says mri’s aren’t particularly reliable for si joints. And I suppose it’s only saying there’s no inflammation but I have been on steroids daily for approx 9 yrs too!"

I have posted something similar on another thread. MRI can be the major source of real grief that patients get deadlocked. I did have a guided injection thingy a few years ago. My MRI did show the abnormality, but I was suffering from it for many years prior, and the damage may have been more obvious. For how long have you got this problem?

I could/can usually tell if there's any inflammation of the spine. It has its distinct inflammatory type pain. I could also tell if it's muscles, but these can be related (and both could be affected), as someone else commented earlier.

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For several years and I either had an mri or X-ray (can’t remember but pretty sure mri) a few yrs back which showed definite narrowing and sclerosis of the right SI joint. I have really bad lower back pain and I wake in the night not being able to roll onto my back because my lower back is just ceased up. If u press specifically on the SI joints it’s very painful and tender. Ido have trochanteric bursitis that I’ve have many inj into.

I can’t stand with my weight on my lower back for too long so have to lean against things like a flamingo on one leg! Sometimes use a crutch as it’s just so painful.

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I had extreme SI joint pain that was eventually diagnosed as both a mechanical (functional problem) AND as sacroiliitis. My right SI joint is not stable - moves around a traps nerves - and my entire sacrum is inflamed. Like you my sacral MRI was normal. I did have a M/NRI which showed edema in the soft tissues and bone, but my joints were “ok”. Problem with a SIJ MRI is that you aren’t moving. So it only catches extereme inflammatory cases or dislocations. Neither of these mean you aren’t in the majority of folks who have sacral pain that is miserable.

LLS - Combined with my other symptoms I was given a diagnosis of a cross over autoimmune syndrome of Spondylitis and Lupus. Basically Psoriatic Arthritis and Lupus. From what I’ve been told it’s an extremely rare cross over, so a lot of time has been separated from determining what are the functional issues and what are the autoimmune, and which disease is causing which symptoms. From what I’ve learned, if you have an autoimmune issue and have ongoing sacral pain, you should be evaluated for something beyond Lupus. SI joint and spinal pain that isn’t mechanical, functional or a result of a known event (e.g. accident) should be looked into. But, it’s not a common joint pain area for Lupus. The sacrum is an axial joint, and Lupus typically goes after the distal joints.

Hope this helps!

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