Can I rule out AS with an X-ray?

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Hi I'm 34 year old female that has been suffering with morning back pain for 8 years now. It started in my mid 20s in my lower back then the last 5 years or so it has been in the middle of my back behind my lungs/ bra strap area. I can't sleep for more than 5 hours without waking up from back pain no matter how tired I am. The only way to relieve it is to get up out of bed or roll my body into a ball facing down and hunching my back to stretch out my spine. I have a hard time breathing for the first minute or two after waking up because it feels like my spine is touching my lungs but as soon as I get up or roll into a ball I'm fine and my breathing is normal for the rest of the day. My back pain usually vanishes within an hour or so after waking up and I am pain free until the next morning. I've had an X-ray done when I was in my 20,s which showed mild scoliosis and another X-ray last year which showed the same thing mild scoliosis and a slight lack of curvature in my neck. Would an X-ray rule out AS, or is it possible that I might have it. I've tried numerous mattresses, I get my husband to push on my back in hopes it is muscle pain and not bone but I'm positive it is spine pain and not muscles. Not sure what else to do, im so tired during the days from lack of sleep over the years and want to have another baby before I'm too old, but can't imagine being pregnant with my morning back pain. Any advice would be greatly appreciated. Thanks

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  • Posted

    Should also mention last year I was given a prescription for prednisone for a swelling reaction I had, and it was amazing. I could easily touch my toes for the first time in my life, even as a child I never could. I woke up back pain free and felt like my whole body was 20 years younger. That was the only relief I have ever had from back pain in years but unfortunately my doctors said it can't be taken long term.

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  • Posted

    I am 32 and been diagnosed with AS 2 weeks ago. I don't suffer to much with my back more my sacroiliac joints. I had an X-ray but it wasn't very clear so I was sent for an MRI scan and that showed the inflammation. So maybe see you DR and see what they say. I hope you get sorted it took a few years for me to get diagnosed my dr just sent me away with pain killers. But I had iritis a few times and it was an eye dr that suspected it for me.

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  • Posted

    Hi Becca,

      Sorry to hear about your pain.  If I understand your question correctly I would say that technically you can rule out AS if an MRI shows no signs of ankylosing in the spine.  By definition AS requires definitive evidence in these imaging studies and MRI is the definitive imaging technique.  It can show what an x-ray does not.  Having said that, AS is not a distinct disease that can simply be diagnosed on a yes/no basis.  It is, in fact, part of a family of inflammatory diseases of the spine.  There is now a lot more research being done on what is called non-radiographic axial spondyloarthropathy.  This is a classification of autoimmune maladies where you have the same pain and inflammation of the spine as AS but you do not yet see the evidence in x-rays/MRIs.  I, myself fall into this category.  So it is possible that you have an autoimmune disease that results in pain and stiffness in the spine but dont see imaging evidence of AS.

    One thing that I don't see here is whether you have been tested for the genetic marker HLA-B27.  If not, you should ask your doctor or rheumatologist about this. Being HLA-B27 positive is not by itself proof that you have AS or something else in the family.  Some people are positive without having the inflammatory issues.  However, if you are HLA-B27 negative then that would be pretty good evidence that your problem is something other than the AS family.  In other words, you can be HLA-B27 positive without the disease but you cannot have the disease without being HLA-B27 positive.  I'm not sure if that is a 100% absolute certainty but it holds as a good rule of thumb.  Hope this helps a little.

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  • Posted

    Hi becca. After suffering for ten years with back pain I was diagnosed having AS on the basis of x-rays.  However, I had my x-rays done even during the initial two or three years of back pain and the findings were that everything is normal and advised exercises accordingly.  It was so because no fusion had taken during the initial years of onset of AS.  But the x-rays done after ten years showed fusion of bones at various places and AS got confirmed. Interestingly, ,my HLA-B27 is negative.  You can take homeopathic medicines to avoid progression is you believe in this system of medicine.  Wish you all the best.  Be happy.  
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  • Posted

    Thanks for the replies. I guess my next question is do my symptoms even sound like AS? When I did a Google search on thoratic back pain in the morning AS seemed to be the only possibility aside from mattress issues and muscular issues which im pretty sure I can rule out. But when I read posts on AS forums and their symptoms you guys have a whole list of other symptoms and joint problems. Is it common to only have thoratic back pain in the mornings and no other major joint issues with AS or should I be looking into something else cause the pain? My doctor recommended physio but I can't stand people touching and poking at my spine in that area and feel it is better off left alone.

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    • Posted

      And come to think of it I did have an mri done about 3 years ago on my upper back neck area when I was having limb weakness, arm tremors and a stiff neck and nothing showed up on the mri. I don't think these symptoms were related to my thoratic back pain because I had the back pain years before the tremors started, and no longer have problems with tremors and limb weakness.

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    • Posted

      Oops forgot to mention that I never had a blood test looking for that gene marker but will next time I go to the doctor.
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  • Posted

    Hi Becca. Thank you for posting your experiences on the forum, we all gain insight when have open discussions about our common burden of AS.

    As I'm reading your story I found myself holding my breath. I began flashing back to my own experience with waking at night in so much pain that I couldn't stand up on my own. I too had great trouble breathing because my muscles were squeezing my rib cage. I actually started to sleep in a recliner. That alleviated those awful episodes. Didn't do much good to my marriage (my spouse wasn't too supportive), but that's a whole different story for another day.

    As to your question, it's possible that they can either confirm or rule out AS with xray or MRI. But that can be misleading. I personally had back pain for 12 years prior to my xrays and I had only subtle changes in my SI joints and zero fusion of my vertebra. Now I'm 100% fused from my SI to the top of the thoracic. Only my neck is free.

    No two AS cases are exactly the same. We all have many things in common and many things unique to us.

    Best of luck! Keep a smile on your face and a straight back.

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  • Posted

    Hello becca...I feel so sad for you, it is such a dibilitating illness. I'd say get a blood test first and then an MRI which will show more than an X Ray can.

    Bending forward seems to help with the pain I have experienced, don't really understand why this works but it does. When you recognise the first signs of pain, bend forward and breathe deeply. Sending you hugs....G

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  • Posted

    Becca34, so sorry to hear about the pain and frustration you are going through. I'm a 44 yr old male who's gone through similar frustration, pain and ambiguity.

    Much of what I state below is from a generalization from cinical trials I've found on the web.

    1st, you can't rule out AS with an X-ray. An MRI of the lower back and sacrum could also confirm either AS (Ankylosing Spondylitis) or axial Spondylitis (Ax-Spa). Unless a patient has been confirmed with Ankylosing Spondylitis, I would  think in terms of Axial Spondylitis first.

    Second, think of AS as a spectrum autoimmune disease which falls under the broader category of Axial Spondylitis (axSpA). I believe an AS diagnosis would require radiographic x-ray evidense in the sacrum plus some fusing in beginning in the spine - it's not always clear in the early stages. HLA-B27+ tend to progress faster and start at a younger age. It's vary common to be diagnosed in the mid-30s and still not have actual ankhylosing; while others may have fusing in their teens - and it be an obvious dx.

    The HLA-B27+ gene is prevelant in about 8% of the European population. But since Axial Spondylitis is in roughly only 1% of the general population, that means less than 1 in 8 people who are B27+ would have axSpA. You can have Axial Spondylitis and be HLA-B27 negative (roughly 5-15% of cases depending on the criteria).While 1 in 8 is a high specificity, it's not quite up there with the breast cancer gene BRCA which is in the 50% range for developing cancer.  

    You can also be non-radiographic Axial Spondylitis. If your narrative of symptoms for back pain and matches you could fall in this category. You may get NSAIDS for treatment which should help and apparently can slow some cases while helping with pain. But if they aren't helping addiquately and your morning stiffness is driving you crazy (like myself) and aren't getting the sleep you NEED, then don't be bashful about pushing for better treatment. If you are nr-Ax-SpA doesn't mean you will become radiographic-AxSpA and if you are r-AxSpA, you may not become Ankylosing Spondylitis. It can take years or decades to progress if at all. 

    I am HLA-B27 negative and being over 40 yrs old there is a lot of resistance in newly diagnosising axSpA above that age. I kept hearing 'maybe' from my rheumatologist when he looked at my x-rays. 

    You want to get both an MRI and HLA-B27 checked, as your narrative sounds very familiar for axial spondylitis. I would emphasize the need for an MRI as they may decide it's unlikely if you come back negative on hte B27. 

    My gastroenterologist said me it's not normal to feel the way you do  every single day - she ordered the MRI; it came back negative, but also showed stenosis in my lower spine. According to the report I had no sacriolitis and they specifically looking for it. The MRI can still be subjective - depending on the radiologist. I'm now in a clinical trial a couple months later where they did another MRI. The doctor looked at it and said unlikely sacriolitis (and no stenosis) on his report, but the trial central radiologist decided I did show signs of sacriolitis on the MRI, so I'm in the study for a TNFi drug.  

    The most important thing for you is to keep looking for a diagnosis. You won't get the appropriate treatment until you have a diagnosis. If it turns out you have a autoimmune related arthritis disorder, you don't want to delay treatment. Outcomes are better the sooner you get treatment.

    You have to be assertive in seeking treatment and diagnosis. Schedule appointments before you need them and ask for specialist referrals. My primary care physians were dismissive and said i had "a lot of symptoms." My 1st rheumi left the diagnosis as osteoarthritis which seemed completely inadequate to me at the time - though my symptoms also progressed significantly over the next few months. 

    It takes practice telling your narrative to your doctor. I always felt I left too much out, maybe over emphasizing the last couple of weaks or talking about gastro problems to the rheumitologist. I too often wouldn't get around to talking about how severe the fatigue was.

    Also, I think one of the major reasons I hadn't seen doctor for back pain over the  past 5-10 years was that I didn't recognize it as back pain. I filtered my pain through a personal lens. I have always been athletic, growing up as a swimmer and started running seriously about 10 years ago. The lower back pain, maybe minor for a while, I could right off as running related. Biking was always uncomfortable. The stiffness at night started over 8 or so years ago; I attributed it to allergies and dietary problems that kept getting worse - trouble sleeping, with difficulty breathing when lying on my back, ankle stiffness and balance problems when getting up, kidney like pain becuase I ate something wrong (that was lower back pain). I didn't want it to be joint related problem and the allergy and diet narrative fit with maintaining my physical and athletic identity. That identity has been taken from me. I'm trying to understand who I am physically now and learning that moderate excersise is a lot less and more difficult than it used to be.

    It's a little scary at first, but the ambiquity and not knowing while being in pain and getting inadeqate treatement is difficult. 

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    • Posted

      A brilliant piece of writing..amazing post Sylvester44...you have put it all in a nut shell...albeit a large coconut shell....this is informative and tells the story of many of us...thank you so much.
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    • Posted

      Hi Sylvester44,

      thank you you for your posting, it was very useful. 

      I’m hoping someone here can help with info or insight. 

      My husband (54 yrs) has Crohn’s disease, and about 12 months ago started getting recurrent high fevers with vomiting and shaking, and extreme joint pain to the degree that he was having trouble walking and standing. He then began to have eye inflammation which was so painful he couldn’t open his eye. He was also having headaches, and lethargy. He was having visible swelling in his knee joint, and the pain often migrated to other joints like his wrist which also swelled and his feet ached. He was also having recurrent back pain, but as he has a couple of bulging discs this seemed nothing out of the ordinary. 

      Our GP is wonderful and very supportive. He ran multiple blood tests which showed some CReactive protein increases at times. In the meantime, I started researching his symptoms and found that they seemed to be what was described as extra intestinal symptoms of Crohn’s disease, and started, as you say, being assertive in his medical care. His gastroenterologist did a colonoscopy which showed his Crohn’s was not in flare up (even though he had been passing blood & mucus at times and was having loss of appetite and bloating which he is still experiencing intermittently). 

      We’ve spent the last 12 months trying to find out what’s going on. He is much better now but this is mostly because he has been off work for several months and doesn’t have to walk or stand much and can go back to bed during the day if he has a bad night. When he does walk though, even for about an hour at a shopping centre his knee pain increases and swelling increases. 

      We’ve been to opthalmologist for the eye, who said he had conjunctivitis as well as a dry eye problem and concluded it was not from Crohn’s eye symptoms. Infectious diseases specialist said he believed it was Crohn’s related fevers and inflammation. Rheumatologist started looking at Ankylosing Spondyloarthritis and did X-rays which showed grade 2 sacroiliac disease consistent with ASp but then ordered an MRI for an unequivocal result. The MRI came back normal. So now we are back to square one. I’m confused as to how the XRay could show ASp but MRI be normal. I was interested in what you said about MRIs not being entirely objective, and am now wondering if the guy who did the MRI got it wrong. He didn’t seem particularly competent when he was doing the procedure (touched the IV site with his bare hands after sterilising and then had to start again, and then removed the IV line from my husbands arm and squeezed the site while he was pulling it out so blood spurted everywhere). 

      So is it possible if someone else looked at the MRI film they might have a different interpretation?  And/or is it possible the X-ray results were correct but the MRI not. As I write this, I feel like I’m answering my own question in my head ...” could the radiographer who did the X-ray been more thorough in his interpretation than the buffoon who did the MRI??

      It’s been 12 months now and this is still unresolved. The rheumatologist increased his Crohn’s medication which is also used in autoimmune arthritis. This hasn’t “cured” him at all. This is affecting every area of our lives, and of course he feels depressed as well. We’ve  spent a fortune on medical treatment with no clear dx.  He has also been stressed by the fact that he is off work and still not well enough to return, so his workplace cannot move on either and refill his position permanently. We are now looking at going for a medical retirement so at least that will be one stressor removed and he can then access his superannuation. 

      I’m hoping that someone here will have some thoughts on this, as I find that the patient (or their support person) is often better informed than the medical practitioners. His first gastroenterologist had never heard of arthritic symptoms in Crohn’s disease even though 1in 5 suffer this extra illness. 

      From what I have read here, people have had negative radiography results to explain their pain and then at a later time had significant spinal deterioration and clear radiography ASp results. We don’t want to wait until it is too late and need to find an answer in order to seek appropriate treatment ASAP.

      Thanks for reading.

      kind regards Aria

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