caret icon Back to all discussions

Suspected Ankylosing Spondylitis

Hello all,

I have a suspicion i might be suffering from AS, I'm currently waiting for a GP appointment but in the UK our NHS/healthcare has suffered badly from covid and the knock-on affect from prioritsing covid over non-covid issues means its pretty hard going getting seen.

I wanted to run through some issuss im having currently to see if they perhaps fall into AS territory.. To please my pondering mind.

- major one at the moment is the back pain and stiffness in the morning, it wakes me up when its bad and i cant ever find a position that works for me. I have to almost swing myself out rather than sit up and round as im too stiff and sore to bend.
Once I'm up I can feel the pain slowly drop away although I'm still stiff enough that putting socks on is difficult! Last night i was woken up but stabbing pain in the very base of my back almost in my butt, usually its kind of lower up to mid back
- I have hip issues too, incredibly weak in my left groin area (i horse ride so this is really noticeable) and my hip pops a lot. It can get sore and stiff but nowhere near like my back. My outer right hip gets painful too especially when sitting
- im working from home at sit at a desk alot, my back flares up frequently to the point i cant sit anymore, so ive made myself a standing desk and try to walk around when in calls as movement helps
- chest feels tight quite alot and like i cant take deep breaths comfortabley, feels almost like its an absolute chore trying to do it. I put this down to anxiety before
- neck and upper back pain recently mainly when im at laptop i suppose from poor posture but i cannot find the right position to stop this
- tired, i get a good amount of sleep usually but i wake up feeling physically exhausted. Im a pretty fit 28 year old, i walk my dog atleast an hour and a half every day and tend to my pony every evening. I'm an active person except obviously when Im working but some days i struggle so much walking my dog as im just so exhausted and want it to be over. Other weeks i am sprightly and walk for miles and feel fine

Sorry this was so long! I think it covers everything, let me know what you all think

  1. Hi , I hope it doesn’t take you too long to see a doctor and to be referred if needs be . In the meantime if you feel up to doing some gentle stretching or look in to a gentle pilates class that may help . I was lucky 25 years ago it didn’t take long to be diagnosed but I understand the wait now to see someone as I am in the u.k too and there’s such a back log on everything . Good luck , take care .

    1. I too am having a lot of the symptoms you are having. It took months to get in to see a rheumatologist After getting a referral and I just saw them yesterday for a full workup of X-rays and am now hoping for some answers. I hope we both get answers soon! Hang in there.

      1. Thank you so much! X-rays had SI joint findings but I don't know what they mean- mild lower lumbar facet arthritis with moderate disk space narrowing on L5-S1. No listhesis. I have a follow-up in 4 weeks to go over results and labwork too. Now more waiting:/ hopefully answer soon!

      2. I hope your follow-up appointment goes well! The waiting game is hard. Hopefully, you will get the answers you need. Keep us updated! Ali (Community Member)


    2. I am so sorry you are not feeling 100%. I hope you docotr will offer a good direction forward.


      As you likely know we are not doctors and we have not examined you so it is impossible for us to know if you do or do not have AS. Certainly I think I would have suspicions like you do.


      I think I might ask to see a rheumatologist to see if you can determine the best way forward.


      rick - moderator.


      1. Thank you for taking the time to share your concerns. I am sorry to hear of the challenges you are facing. The struggles with the healthcare system where you are certainly is an added frustration. Unfortunately, we are unable to give medical advice over the internet (for your own safety). however, I would like to share a few articles that you may find helpful: https://ankylosingspondylitis.net/symptoms and https://ankylosingspondylitis.net/diagnosis
        Sending positive thoughts that you are able to find some answers soon.
        My Best, Doreen (Team Member)

        Please read our rules before posting.