Awaiting diagnosis...

Posted , 4 users are following.


ive been suffering lower back pain on and off for years, usually being prescribed naproxen and cocodomol. After realising that my old mattress wasnt the cause of my back pain at night (replaced it with a new one) i went to the doctor and mentioned AS, after many questions my Doc agreed and i had blood taken which i am still waiting for the results 4 weeks later - testing for HLA-B27.

The Doc prescribed Ibuprofen for 3 weeks which helped after about a week. Hes now told me to stay off the Ibuprofen for a few weeks and only use when needed after this. So now Im in pain, the Ibuprofen has worn off, Im so tired and quite frankly depressed. He has referred me to the Rheumatology clinic at the hospital, but thats months off. Ive convinced myself that the HLA-B27 will be negetive, because nothing seems to be straightforward for me!

I suffered a period of a few months around a decade ago where i was struck down - literally with seeming arthritis everywhere - it went after a couple of months, im not sure if it was ever diagnosed, i know that at the time they kept asking if id had an infection, which i couldnt remember having so Reactive Arthritis was what they were thinking, and i know theres a link with the HLA-B27 there.

Im interested to hear anyone elses experience in being diagnosed, how long it took, whether you are HLA-B27 + or not, and what treatment you're on.

Thank you

0 likes, 7 replies

7 Replies

  • Posted

    Hiya Karen, well I guess I won't be the only reply you will get....just about all of us have gone through what's happening to you. Mine started way back in the late 60's.....back pain and tiredness, frequent trips to doctors, acupuncturists, physios, mental health professionals blood tests etc....Then about ten years ago I had an MRI which proved to the many doctors that it seemed to be A.S. The waiting and wondering is frustrating and we've all been there. My biggest fear was the word "Cancer"....but thankfully it wasn't that. So now after ten years of treatment for AS, I am unable to walk more than a few steps and spend most of my life in a wheel chair. The flare ups are the worst to cope with as every part of my body hurts, temp goes up, BP goes up and usually it's a couple of days in hospital to get it under control. But I have taken up writing, painting, and other studies which keep me sane.....I wish you the best with your diagnosis and pray that things will get better for you. Keep in touch, we are all here for you and send you love and hugs...Gloria

    • Posted

      Thank you for sharing your story, im so sorry you had such long road to a proper diagnosis and for the pain you've endured.

      I feel so desperate for a name to give this thing that has blighted me. I'm realising that its not only the physical symptoms that have worn me down but also the mental. i feel like i cant be taken seriously until i can say 'Its this' . At the moment i just feel like a moan to everyone.

  • Posted

    Hi Karen,

    as you have read in Gloria's reply, more often than not, it takes a lot of time for doctors to establish an AS diagnosis. And I am sorry that due to lack of wide-spread information and education of doctors, they didn't do more for her.

    In my case it took them a couple of years and it would have dragged on for God knows how long, hadn't I had my first textbook AS flare up. The pain that was located in the left sacroilliac joint has spread to the lower back, I started tilting towards left and had cramps in my back muscles so bad that I would end on all fours on the floor.

    Funnily enough, for years I have been asking doctors if the sacroiliac pain I was experiencing, as well as some other symptoms I had, could be AS. They kept sayiing "no". However, at that moment they picked up on all of the manifestations.

    I'm HLA-B27 negative, but the diagnosis has been confirmed. My AS hasn't left any permanent changes my joints, so far, BUT, the latest heart ultrasound has shown the beginnings of a mitral valve prolapse. If you check it out you will see that it can be linked to AS.

    I have been on cortisol twice for two flare ups, but otherwise I don't take any meds. (please read up on how certain pain meds influence your digestive system, I'm not a doctor and my pain is manageable, but I steer clear of ibuprofen. Even my rhumatologist agreed and when it got really bad he put me on something else for only 3 days and that was that )

    After the last flare up (spring this year), the inflammation has stayed in my fingers. My right hand seems to be particularly affected. My middle finger is swollen. It hurts especially at night.

    I had to stop doing yoga, because I cannot exercise too much pressure on my hands AND for some reasons all the postures that are supposed to be good for me actually provoke back pain. I tested it several times.

    I gave you these details to show you that AS can be different for everybody.

    However, I do think that much can be done with improving your gut health (avoiding meds and food that are damaging to your gut bacteria, gut walls....), eating right (minimizing or ideally eliminating processed foods, going grain-free, dairy free, red meat free, watch intake of starches.... many things have been written on this subject), exercising, sleeping enough, managing stress. I also watch not to wear any clothes that is too tight, because this too can provoke back pain.

    Don't lose hope!

    We have to stay flexible (pun intended 😃 and adapt our strategies. Some of the things that have worked for me have stopped working, so I had to find other ways to deal with this.

    Have you tried supplements of turmeric with pepper ?

    Hang in there!

    • Posted


      Thank you for replying, i appreciate you sharing your story.

      Only since i brought up AS after the classic pain in the second half of the night, do i finally feel i might actually be on a road to something resembling a diagnosis. I've suffered back spasms in the past few years as well. I suppose its like putting together a jigsaw puzzle of symptoms that come around individually and over a period of years. I wasnt aware that what i have experienced would be described as 'flare ups' , but that makes perfect sense now. Holding fast for my Rheumatology referral however long that may take. Interesting information about diet, something id not realised. I'll definitely look into that.


    • Posted

      Oh yes! diet is primordial for all autoimmune diseases.

      I have a thyroid autoimmune disease and I had to stop eating gluten, because it exacerbates the inflammation.

      Same goes for me with foods high in sulfur (Cruciferous vegetables - cauliflower, broccoli...; Allium vegetables - onions, garlic...) they wreak havoc in my gut, grains and pseudo-grains as well and some more than others, rye and buckwheat are "killing" me. Unfortunately beans and lentils as well.

      It could be because my gut flora is not still in order or because I simply cannot digest it for other reasons.

      I can tolerate certain trigger foods in small quantities and if I do not eat them on regular basis.

      The quality of produce also matters. I started having issues with fruit and vegetables because they are not ripe. And not only in big surface supermarkets but organic shops as well. They are full of starch when they are not ripe and not fructose, if we are talking about fruit. And with AS it is extremely important to limit (or avoid altogether) starches. Some people test their food before eating it with iodine. You'll find lots of threads on this subject here.

      Google gut and immunity or autoimmunity and you'll find loads of information.

  • Posted

    Hi Karen

    I did the same as you in that I thought my mattress was giving a bad back as I used to be pain in the night, and thats where it all started. I think this problem is difficult to diagnose. It was about 3 years for me. I thought i had kidney problems then ribs then back the hips. drove my doctor mad until she did a review and after hospital visit was confirmed spondylitis.

    i was not HLA-B27 positive.

    I also was taking Long lasting Ibuprofene at night and found this worked for a while but then didnt seem to be as effective so thats when I went to doctors.

    Initially i was given Naproxin but after a few years i was changed to Arcoxia and this works well. With AS you get flare ups. I was told by the hospital to take the Arcoxia but on top of this take Paracetamol. This works really well.

    I think diet is really important as well. I keep sugar low as this triggers flares for me. I also stay away from fast food.

    Turmeric is a natural anti inflammatory and i understand that spicy food is also good seem to remember reading something about chillies but worth a check.

    There is a society for this condition. Its really good as loads of info. well worth a look.

    AS loves it if you dont move so keep active if you can. I find smimming is great however like every thing is about moderation.

    Too much and the pain starts.

    Try not to feel too down as there is light at the end of the tunnel. When I was first diagnosed I was in so much pain but once on treatment and I also attended a physio course I am a lot better. Sometimes I have a couple of days when not so good but I know it will pass.

    All the best


    Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

    • Posted

      Hi Laurence,

      Thanks for taking the time to reply. Thats really helpful. Ive found myself second guessing myself so much over the past few weeks. Ive been put back on Brufen today so hopefully the night pain will ease up soon. Right now im just exhausted, unable to concentrate and feel generally under parr. I feel incapable of doing my job which is semi physical and can be stressful, so ive been off for 2 days. Im desperate for my referral to come through and the flipping result of the HLA -B27 test (nearly 5 weeks now!) though i know this isnt the definitive marker that i was lead to believe by my doctor. Just have to trust in the consultant whenever that comes round.


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.