Need advice. Possible AS diagnosis

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So the past few weeks I've been stressing about this AS stuff. I remember learning about it in respiratory and echocardiography school years ago with its effects on the aorta and lungs.

2 years ago I've had this waxing and waning SI joint area pain that when it flared up caused me to have a hard time walking. There was really no rhyme or reason to it. But sometimes if I did a brief jog with uncomfortable shoes or did a leg press at the gym, about a few days later I noticed it would flare up. And it would be bad! My gf would need to help roll me over in bed. I would limp. This would carry on for 4 days and then be gone. Then I would be pain free.

Im 33 years old and male BTW.

Over the past year I noticed a new problem. Awful early morning back pain that would wake me up around 4-5 am. It would seem to effect different parts of my back. Sometimes in between the shoulder blades or the lower back. I would get up and in about 30 minutes it would go away. Sometimes I would feel uncomfortable sitting.

I went to a rheumatologist finally. He did a mobility test and said that AS or inflammatory back disease seemed highly unlikely....although he said I had a classic inflammatory story. Anyway, my mobility test or whatever initials he called it was "supranormal". He told me to avoid using the term SI joint area, he suggested I use lower back pain. I told him when things flare up that I wouldn't be able to do some of those mobility things.

He said if I wanted to get the HLA B27 test for peace of mind I could.

I did.

And it came back positive. He wrote me a letter saying that 8% of the world has a positive result and of that only 1% get AS.

I am really upset about this reading these things online. I don't want to be a statistic.

I forgot to mention that I had an xray just before I saw the rheum and it was clear. No signs of AS.

What does everyone think?

My bed and the soft pillows I use always seem to give me nocturnal back pain.

However, my couch seems to be the trick. It seems more firm than my bed. I even tested my theory out by taking my couch cushion and using it as a pillow in my bed. I didn't have any back pain. 

Has anyone expereinced this? By sleeping on a firmer surface that their back pain alleviates? I believe I read somewhere that patients with AS tend to prefer sleeping on firm surfaces. Not sure if there is truth to this.

Can people tell me what I should avoid as in a low carb diet? I make my own wraps out of whole grain flour and eat peanut butter and oatmeal every day. Does this mean I need to give all those foods up?

My rheum is leaning towards that I dont have AS until proven. Or maybe he is trying to just make me feel better. I tested postiive for the gene, but the constant back pain in my bed, and once a month or 2 months SI area flare ups to where I am limping.

He is telling me to take ibuprofen before bed and live life vigariously and see what happens. But I am reading that its best to try to get a one up on it before effects the spine.

What should I do?

Thanks everyone

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17 Replies

  • Posted

    Hi

    I know exactly how you feel i was misdiagnosed i was told i was fine because my xray was read wrong and im one of the 3% of the population that has AS and is hb 27 negative..

    I fought for 3 years to finally get a proper diagnosis.

    If you think you have a serious problem keep fighting go to 100 doctors if you have to.

    Im currently on a foam/air mattress on my floor because it's just the right firmness when im really bad i just sleep on the floor. It gets annoying i havent slept in the same bed as my partner in a while.

    I have one of the best rheumatologist in the country and even he made a mistake and apologised.

    I know its hard but don't give up and fight for your qualify of life. Feel free to msg me if you need to chat.

    I hope you feel better

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    • Posted

      Thanks Kristy,

      I have back pain if I sleep in my bed with the pillow I have. Soft feather. Sometimes I don't get back pain. But most of the time I would. Soemtimes it would make my ribs feel sensitive. No turning would let me get comfortable.

      However, and this is still experimenting. I notice that If I slept on my couch I would be fine with no back pain. So last week I took a couch cushion off and wanted to see what would happen if I used that cushion on my bed instead of the feather pillows. So far after a week I have found that there is no morning back pain. But the couch cushion is firm. So having my head using that it seemed to work.

      WHen you said sleep on your floor, you mean without the air mattress? I think that would cause me pain.

      I told my rheumy straight out when I first saw him that I thought it was possible AS due to my SI area and morning back pain. I think he is doing the wait and see approach to avoid scaring me maybe? But at the same time he wasn't big on a follow up. THis is the note from his notes about me, "Very good history for inflammatory back pain for 1 year, but absolutely normal exam with supranormal Shobers. AS doubtful. Other inflammatory arthropathy hard to get excited about if it is controlled by low dose NSAIDs."

      The NSAIDS don't get rid of all the pain but it dulls SI flairs.

      What hospital does your rheumy work for? Im in the USA.

      At what point does all the pieces fall together when they can call it for what it is?

      My xray was normal. Its just the symptoms I'm having. I'm going to see him again in 4 weeks and I'm going to ask for an MRI.

      WHat should I do if that comes back normal? He told me today that I am 33 years old. My mobility exam being excellent made him believe  Iam going to live a long healthy life. Yet the exam he did wasn't during a SI flair up. 

      What do you think about asking to see him once a year with an annual xray of lower back?

       

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    • Posted

      How old were you when you started having problems?

      How long did it take after that before it started effecting your mobility?

      I only have walking trouble when my SI area acts up. It is so painful that it hurts to walk or roll over in bed.

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  • Posted

    It certainly sounds like a spondylarthropathy from your description. Many cases don't show up on X-ray initially. I would push for an MRI looking for inflammation. Many people have non radiographic axial Spondylitis. 

    You are also entitled to get a second opinion, perhaps approaching one of the medical advisors that work for NASS. I used to travel 300 miles to see a centre of excellence as my local Rheumy kept telling me to stop steroids. My first Rheumy started them for Polymyalgia, which was her diagnosis at the time. It was clear from my response to them that I had something inflammatory going on. You know your body, keep pushing, they do say it takes an average of 8-10 yrs to get an AS diagnosis. I seen rheumatology for 5yrs before mine was discovered. 

    Good luck

    Maureen 

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    • Posted

      Hi, thanks for the reply.

      Is it okay to ask how your mobility test was when you first started having problems?

      My rheum said I had normal mobility. That he isn't convince of AS although the SI area pain flairs and the morning back pain have me very concerned.

      I think he will do an MRI in a few weeks when I see him again if I push it.

      But if that comes back normal then what?

      I think he will only do something if it has signs. So should I plan with him to have an annual visit with a xray included to see whats up?

      He tells me that he doesn't suspect AS but I did have a positive HLA.

      How old were you when you first started having trouble? Where is your status now? How long did it take till it started effecting your mobility?

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    • Posted

      I have had pain in the lumbar spine and SI joints since my early 20s, now 52.  Put it down to my career as an orthopaedic nurse. Didn't do anything about it, except see GP over the years for short courses of antiinflammatories. In Oct 2011 pain developed in neck, thoracic spine, shoulders and hips. Referred to Rheumy who in Dec 2012 diagnosed atypical Polymyalgia and started me on steroids. Then developed head symptoms and was sent to another Rheumy for his opinion, who told me nothing wrong and get off steroids. The head symptoms suggested GCA a medical emergency associated with Polymyalgia. So I asked GP to send me to Leeds (300 mile away), to see an expert in Polymyalgia and GCA. She agreed it appeared Polymyalgia /GCA and needed to continue steroids. Fast forward 18 months mentioned to Leeds Rheumy about rib and pelvic pain waking me 2nd half of night. She then said she thought it was spondylarthropathy and referred me to a colleague who was an expert, when X-rays were taken of SI joints I had fusion, my MRI showed rib fusion and changes to my vertebrae. She then referred me back locally, Kent, to start biologics. Before biologics my movement score (BASMI) was 5.8/10, after 3 months biologics it was down to 1.8/10, so excellent response to biologics. I still get pains where damage has already occurred, but in much better place now.  Sorry for length of post, but was a long journey. BW Maureen

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    • Posted

      I've been fortunate as Benepali worked very quickly for me. No side effects  at all. About 5 month in I started getting injection site reactions, never used to leave a mark. However I take antihistamine the day off, and day after injection which has helped enormously.  I still take painkillers to help with pain in damaged areas. I believed eve if you start before damage occurs you could be almost painfree. Good luck

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  • Posted

    This is probably the most common thread in the whole realm of AS.  Getting an accurate diagnosis and then getting a diagnosis that doesn't change over time is a huge and common problem.  Often you will get a diagnosis and then maybe you change rheumatologists for whatever reason you often go back to square one because the new doctor has other ideas.  I was diagnosed four years ago but I was one of the ones that has never shown x-ray evidence.  I am HLA-B27 positive, I have that same classic early morning pain problem, I have a family history of a mother and two siblings with similar problems (none of them have ever seen a rheumy though).  But there are two problems.  As stated, I do not show ankylosing in imaging studies so I fall more into the axial spondyloarthropathy category than the classical AS category.  But even more concerning is that I have been on 4 different biologic medicines over the years and none of them have really done much.  If you go under the assumption that these treatments are diagnostic as well as therapeutic then it is curious that none of them have really worked.  The point for you though is not to be discouraged by confusion and differing opinions as you try to get a diagnosis.  It is pretty common.  One thing you didn't mention unless I missed it is whether you have any family history of AS.  It is fairly common for this to run in families so having a family history is another bit of evidence for AS in your life.  

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    • Posted

      Thanks for the advice.

      I sent a message out to my family on both sides a few days ago. There is back pain from what I am hearing but still no details about it nor any positive AS. However, my grandmother had bad arthritis in old age. But she was never tested for HLA as far as I know. It think it was regular arthritis.

      I'm 33 years old but I suspect (time flys) that it started with SI a few years ago. The flair ups come and go.

      I noticed I didn't have SI flair ups when I did the exercise program Insanity. However, I did notice flair ups after doing heavy weight on the leg press or one time I did a small run to my car with dress shoes on and it seemed that falired it up.

      Peter, how is your pain now? Is there evidence of anything on your xray now?

      DId your rheumy do a mobility test on you? Mine was said to be extremely good. Because of that, my rheumy said he wasn't confident I have AS. Sometimes the SI doesn't flair up all the time.

      ALso, I notice if I have a really firm pillow, I'm able to sleep in my bed with NO BACK PAIN. It doesn't happen every night either but it does happen most of the time. That was before the firm pillow. If I have that then I'm good. But I've only been doing that for a week.

      I notice that one spot on my mid spine, that if I push on it with my finger that there is dull pain. But the day im usually pain free.

      My Rheumy doesn't think I have AS but he could be saying that to make me feel better. I have a follow-up with him in 4 weeks. It was originally 6 months but I emailed him to say I want to see him sooner. HE said in the meantime take one ibuprofen before bed till I see him and we can talk about it then.

      WHat makes me worried is the weird back pain in the early morning hours, sometimes even my ribs feel sensitive. The periodic SI flair ups. He told me to avoid using SI area term because it could be lower back. But the pain I feel is basically deep under the buttocks that is mostly on one side but can alternate.

      Also I was HLA positive. I want to feel like I can believe him that  Idont have it.

      When I see him I'm asking for MRI. Then a game plan. Should I see him once a year afterwards and get an annual xray?

      I cant imagine he will put me on a biologic in my case since I have great mobility.

      What has been your experience with pain from the beginning?

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    • Posted

      Also, did you have a normal physical exam initially?

      This is from my chart when he wrote his notes

      "Very good history for inflammatory back pain for 1 year, but absolutely normal exam with supranormal Shobers. AS doubtful. Other inflammatory arthropathy hard to get excited about if it is controlled by low dose NSAIDs."

       

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  • Posted

    Hi Joshua, sorry to hear of your problems. I’m 37, just been diagnosed with AS. Initially I started off with neck pain around 3yrs ago, MRI showed disk herniation C5/6. Then about 2yrs ago I started to get pain in my back mainly during the night and waking up. Changed my mattress thinking it was that, but no change, in fact got worse.

    Went docs, was referred to Rheumatology. Doc said given my symptoms she wanted to test me for AS. MRI showed I have AS. Blood tests showed normal inflammatory markers and negative HLA-B27. Recently I’ve had pains in my hand, arm and feet, all at different times, intermittently, so not sure if this is the AS.

    I’ve tried naproxen which helped with the pain but had stomach cramps and made me very sleepy. Dr prescribed Arcoxia, so far no side effects but still feel pain with this. Dr wants to apply to put me on Benepali weekly injections and will be in agreement, even though bit anxious about taking it. Once I read up on AS, most of my symptoms were as they listed... extreme fatigue, morning back pain, bowel problems etc. I would suggest maybe request an MRI. Good luck

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    • Posted

      Hi Jojo, sorry to hear of yours too.

      How is your flexibility?

      When you saw your rheum, did he do a test to see how well your joints are able to move? Such as have you bend and touch your toes and such. How did you do with that?

      Did they see any signs of trouble on an xray of yours?

      What do you mean when you say they saw AS on an MRI? What do they look for? How long ago was the first MRI that showed disc herniation to the present MRI that showed AS?

      Thanks

       

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    • Posted

      Thanks, I’ve found this site useful hearing from people with AS. 

      I only had to do the basic stretches and I believe I was ok and flexible.  

      My 1st MRI was only of my neck as that’s where I had pain, that was 2015.  X-ray did not show any problems... I think that was prior to Rheumy referral, I can’t remember exact tbh.  

      My MRI of back was this year, results stated “there was subtitle bone marrow oedema of the right SI joint which would be consistent with sacroilitis. There was also high attenuation affecting the anterior superior corners of the T11/T12 vertebral bodies which are likely to represent Romanus legions.  This picture would be consistent with subtle AS”.  I am waiting to see what the results were of my neck as no mention of previous results, could be where doc was only looking for AS. 

      I always feel rushed with the Rheumy Dr therefore still have questions I want to ask her, as to me it reads it’s early stages... yet the pain is bad when having a bad day.. and it’s not knowing when you’ll have pain as can go days without pain in back. Neck is every day but this prob due to the disc herniation.  I used to love working out at the gym but not the same now with my pains and worried I will do more damage. 

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    • Posted

      I'm hoping the best for you JoJo. Is there a chance you dont have it though? Maybe its regular arthritits? Or does paint picture that is hard to ignore?

      With your SI joint, do you sometimes have a hard time walking when it acts up?

      When my hip acts up it is hard to walk well. This can go on for a week. Its been coming and going for about 2 years now. Hard to imagine that it isnt something.

      My xray came back normal but  iam scheduled to see the doc in a few weeks. I'm going to request an MRI.

      My rheumy is telling me to wait and see what happens. He isnt convinced I have this but i did test postive and the intermittent pain. 

      Thanks for the response.

       

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    • Posted

      Thank you, likewise, I hope you get a definite diagnoses so you can be treated... or confirmation it isn’t AS. 

      At first I did think the same.. and was in denial what if I have been mis-diagnosed, although my symptoms match the ones with AS.

      My pain is mainly Lower-mid back early morning and my neck can be anytime. I do get some weird feelings in hips but not so much pain. 

      Good luck with your MRI. 

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