Worsen quickly

Posted , 5 users are following.

I have not been officially diagnosed with Ankylosing Spondylitis but my symptoms seem to match. I’ve been looking for answers for over 3 years now. A rheumatologist told me two years ago that, though I have the genetic marker, my x-ray images didn’t clearly show the signs. He said my pain was likely due to a congenital malformation in my lower spine, but didn’t seem too sure when he said it. I have a follow-up in three weeks to see if he thinks anything has changed. For me, the symptoms have worsened noticeably. I can’t lay down at night for more than 5 hours, and I’m often up even after 2 or 3. And even that is worsening quickly. Also, even in the last few weeks, while the pain and stiffness has slowly worsened in my back generally, the pain in my tailbone/hips and lower back have increased dramatically. It almost feels like I injured my tailbone in an accident, yet I have not injured it in any way. Of course, I don’t know that I have it yet, but how common is it to see AS symptoms worsen as quickly as this?

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  • Posted

    A up Tyler push for a mri scan I was years at the doctors,it's a muscle strain,it's because of my trade blah blah blah,then sent for mri result rheumatologist visit,pain killers dint work now weekly injections still in pain but having lived with it for years my body,s used to it.like I said many times it,s your health your body your rights.p's do you get it in your neck like a massive headache for days that's a classic symptom of as.good luck

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  • Posted

    Tyler,

    ​   This belief that you either show signs in MRI of ankylosing or you dont have  anything in terms of autoimmune disease is a mind numbingly stubborn viewpoint even among some rheumatologists.  This is and has been my understanding.  If you have an autoimmune disease that causes pain and stiffness primarily in the spine and related structures and MRI shows evidence of fusing in those structures then they call it ankylosing spondylitis.  If you have an autoimmune disease that causes pain and stiffness primarily in the spine and related structures and MRI does not yet show evidence of fusing in those structures then they call it axial spondyloarthropathy or just seronegative spondyloarthropathy.  They have done studies which try to predict how long it takes to go from the spondyloarthropathy to full blown AS because it is assumed that these are just points on a continuum of autoimmune disease.   Please push your rheumatologist on this and if that person does not seem to be familiar with axial spondyloarthropathy then find a different rheumatologist that specializes more in the family of diseases that AS is a part of. 

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    • Posted

      The base disease is the same in that you have to deal with the chronic inflammatory process, pain and stiffness. The treatments parallel what you see in many of the autoimmune diseases (methotrexate, various antiinflammatories, tnf inhibiting biologics etc.)  But obviously once you get to the point where the spine is starting to fuse then you have that new wrinkle on top of everything else.  Then it becomes even more important I believe, that you do whatever you can to maintain range of motion and flexibility.  So if that is not part of the early treatment plan then it certainly needs to be once the fusing process becomes significant.  In it's more serious permutations you also start seeing deformities of the spine like kyphosis of the neck and bowing and twisting of the spine.  It is not an insignificant development.  But again, seronegative spondyloarthropathy is a general term for this inflammatory process that attacks the spine and ankylosing spondylitis is simply a specific form of that family of diseases once the fusing of ankylosing starts.

      ?I am obviously not a medical professional but I have spent the last 3-4 years being in the first boat.  I have positive HLA-B27, the chronic pain and stiffness that is worst in the morning, no significant evidence in MRI of ankylosing and I have dealt with numerous medical professionals who wanted to call it anything but an autoimmune disease.  So I just tried myself to understand how all of these things fit into place.  It is my understanding also that x-ray used to be the only way that they could make a diagnosis.  Consequently anyone who did not show xray evidence by definition did not have anything autoimmune.   The whole disease process was not understood well.  Unfortunately a lot of medical professionals havent caught up because AS in general has not been the same poster child for rheumatologists as rheumatoid arthritis and a few others.  Maybe it will get there.

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    • Posted

      Very interesting. Thank you. Mine has gotten to the point where the stiffness and pain lasts all day long now but it gets even worse at night. Seems to be progressing rapidly now. I just want some answers. Anyway, thanks for explaining all of that - it makes me want to dig in and do more of my own research.
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  • Posted

    Wait for the follow up. Your symptoms could be alot of things, AS definetly being one of them. And yes it can get bad real quick, mine did. Had it for a long time, then had a spinal fusion and kicked the AS into overdrive. One thing to mention, the back is different than other parts of the body, You could be in agony and the pictures don't look like much or you could look messed up and not feel that bad. The back is different in that regard than other parts of the body. Also anything else going on, groin pain, eye or stomach issues, tendon, ligament or muscle issues anyplace else in your body? I would write more but Peter covered alot of what I would have said. Stay in touch? Peace

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  • Posted

    That is an excellent point by Indigoods about the level of pain not necessarily matching what shows up on imaging studies.  This is especially true when you start getting chronic inflammation as part of the picture.  The other aspect is that the pain is not really specific to a given spot.  My pain management doctor did a procedure recently where she kills the nerves which mediate pain coming from facet joints in the spine.  It's called a rhizotomy.  And it did help with that specific pain.  When I told her that it did help she couldn't understand why I still thought I needed hydrocodone.  I tried very hard to be polite but my thought was that she really hasnt worked with anyone with spondyloarthropathy before.  If only the pain were that easy to snuff out.

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  • Posted

    My symptoms started in Oct and by Jan I was so stiff that I couldn't turn over in bed, it was hard to get out of bed.  Arm pain and hip, lower back pain. And the rheumatologist said it was my cholesterol. All that was in 2012-2013. I went to Duke and they thought I had poly myalgia which they treated with prednisone for a year. I was still having hip pain and they did a MRI and they saw the SI joints were inflamed and that is when I was diagnosised with AS. I have been on Humeria which caused diverticulitis, Embrel which I started with arm pain and chest with butt pain and know I'm on Semponi which I'm still having pain in arms. When I was really stiff ibuprofen didn't help. After being on the biological and the inflammation is less intense, I can take 800mg ibuprofen once daily it help.

    This journey has been hard. I'm better. Hope this helps you.

    Good Luck, hope you get relief from the stiffness.

     

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