Could this be AS?

Posted , 4 users are following.

Hi.. I know this site is not for diagnosing but just wondering if anyone has had symptoms like mine and can shed any light or offer advice.

I'm 40...when I was about 15 I was told I had

Scheuermann's disease. I had weeks of physio, the pain subsided and that was that. I always suffered the odd twinge since then but nothing too unbearable. As I got older (late 20s/early 30s) my lower back began getting twinges and aches. Docs never seemed concerned and said it was wear and tear. It began hurting more on movement and bending and eventually naproxen was prescribed. I stopped taking it as the pain would either wear off or I could just bear it without medication. For the past few years I've always had to sit with support against my lower back, i wake up most mornings with stiffness and over the last year have woken up in the night being so stiff it hurts to straighten up and turn over. My hips are painful, they burn when I'm mot walking... If I've been walking and stop my lower back and hips can be agony.

Over last 9 weeks I have been diagnosed with costochondritis but the pain seems worse in my upper back than in my ribs. It constantly is in pain... More so when I'm at rest. Like a burning aching pain. I get pain in my left arm, my neck is sometimes stiff too and I get a sore throat often. I've had blood tests which are all clear and a chest xray which was clear. No mention of ct scan or mri. I am lost now as to what to do or say to my docs? Any similar stories or advice would be so greatly received.

I'm so sorry for rambling on!!

0 likes, 3 replies

3 Replies

  • Posted

    Find a doctor who can order a full battery of tests, because it could be AS.

    They need to check for inflammation and rheumatoid markers in blood (I'm not sure if that's the way to say it in English), IRM of the sacro-iliac regions, check if you are positive for HLA B27. Even if you are not, which is my case, that does not exclude AS, but if you are the doctors may be more inclined to set the diagnosis.

    However, unles you have really elevated the markers I have mentioned above, they will not put you on a long-term therapy, just manag the symptoms (pain)e and observe the development of the disease.

    It took the some time do diagnose me. And even today, because I am, in their opinion, in a good shape, they find it hard to believe.

    Morning or stiffness after prolonged sitting or lying down is one of the main symptoms.

    The pain/inflammation usually starts in the lower back - sacro-illiac joint and it usually affects one side only at the beginning. Over time the pain can spread to other joints (including ribs!, upper spine, hands, wrists, HIPS, knees...). It can affect eyes, heart and even intestines (there's a clear link with intestines although they do not know which comes first, some doctors bet that the gut is affected before you have any other symptoms).

    • Posted

      meet rheumatologist.

      to confirm AS, you need mri of si joint, if it is positive then do blood tests hla b27, esr, crp.

      this will almost conclude AS or not.

  • Posted

    Dear Emma

    It sounds like ankylosing spondylitis.

    I was also misdiagnosed with Schaumanns as a teenager.

    You will benefit from anti-inflammatories and you can add paracetamol for pain at night. The blood tests and XRays are not very specific for AS so i think you need to see a rheumatologist to get the diagnosis.

    I have also experienced problems with diagnosis in the past due to being a woman and still mobile. Some people are still stuck on the photos from the 1950s.

    Best wishes.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.