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Did you have inflammatory markers in your blood?

Hello,

I hope whoever is reading this is having a good day and thank you for your time reading this.

I’ve been reading your stories on here and I see myself in so many of them.

I wanted to ask advice, if I may, did any of you who are diagnosed with AS have inflammatory markers show in your blood or were any of you diagnosed with AS without inflammatory markers in your blood and scans?

My chronic lower back, hip, and joint pain is really affecting my life, making me depressed and anxious. I am actually a very happy, active, bubbly social person but I have 20% of my usual power atm.

These are my symptoms:

- HLAB27 positive
- I wake up with pain every day, this gets better if I move after 30mins an hour
- I have lower back and hip pain especially on waking but also during the day
- Aching joints (mostly shoulder, knee, wrist)
- Fatigue
- Psoriasis
- Have developed brain fog with difficulty concentrating
- years of tummy issues since I was a child, gluten intolerant
- spondyloarthritis (appeared in the write-up of my spine MRI in my last MRI but was not enough for them to say AS I presume?)

Between 2014-2021 I have had four slipped discs so when I go to the doctor they say my pain is mechanical pain not AS.

I am in a cycle of them giving me a physio referral and ibuprofen 600mg and tell me they can’t see AS on my scans so it isn’t that. I’ve always been relatively fit and lean just for context. Then I don't go back to the doctor till my pain and mobility get worse, as I feel silly. Then they scan me again, say it's a slipped disc and so the cycle goes on.

I’ve lost my confidence talking to doctors and I wondered how you kept your confidence going to go to the appointments?

I only want a diagnosis as I know I could hopefully have the right medication… and I am in pain every day, this isn’t from a slipped disc you are meant to get over slipped disc pain in 6 weeks. It's been 6 years and getting worse now with my hip.

If anyone can help or advise I would be so grateful.

Thank you very much for your time.

  1. Good evening !

    I am so sorry you've been struggling for so long and with no answers. I can only imagine how discouraged you must be feeling.

    Let me start by saying you and I have identical symptoms, all the way down to the herniated discs. This made it tricky for diagnosis initially for me as well.

    I have never, and I mean not once, had elevated or abnormal inflammatory markers. This also makes it hard for diagnosis, so I understand your frustration.

    I learned that finding doctors well versed in AS is essential. The first rheumatologist I ever saw told me that I didn't have AS because 1. I'm female and 2. Fatigue is not a symptom of AS. This was a HUGE red flag as I had been studying this disease for several weeks at that point and knew that fatigue was a top symptom.

    I saw every doctor I could until I found two that knew a lot about AS. This included an orthopedic surgeon who specialized in spinal disease and a different rheumatologist.

    You know your body better than anyone and it definitely sounds like you're on the right track. My best advice is to seek the opinions of any and every doctor you can until you find the one who is willing to hear you and help you. Even if you can get in with a physical therapist, maybe they can steer you in the direction of a great doctor!

    Stay strong and keep advocating for yourself. Sending hugs and hoping you can get the answers you need to get relief! -Katie, Team Member

    1. - Thanks for posting your questions.


      There's an "Are you HLA-B27 positive or negative?" thread here: https://ankylosingspondylitis.net/forums/are-you-hla-b27-positive-or-negative. Have you gotten a chance to check that one out? It's a good place to start if you're looking for people's thoughts on inflammatory markers.

      I'm also sorry to hear about how frustrating and tiring your doctor's appointments have been. I think it is normal to feel this way with so much testing and no diagnosis. These articles might be helpful if you're trying to take charge at your next appointment: "Be The Boss of Your Next Appointment" https://ankylosingspondylitis.net/living/appointment-advice and "I'm Seeing My Doctor, And I Wish I Felt Worse Today..." https://ankylosingspondylitis.net/living/appointment-days.

      Let us know if you have any questions, there are plenty of listening ears around and information that we would be happy to share.

      Sending positive thoughts your way during this frustrating time.
      - Cody, Community Moderator

      1. I really can't tell you how much it means to have got these replies. The relief I felt here when I heard back on here, makes me release how unheard I think I feel IRL about this. Thank you for your thoughts and tips. I will look at those blogs thank you, Cody. Katie thanks for sharing part of your experience and that we have similar symptoms. I managed yesterday to get in touch with an AS specialist clinic who said that according to my symptoms they think I need to be assessed and are going to get back in touch with an appointment. Hopefully it won't be too far away so I can get some proper medicine and start to feel better. Sending hugs and thanks

        1. Hi
          I hope by now you have made some headway with your diagnosis. Let us know how you are doing now.
          In the meantime, I hope you are feeling as well as can be expected.
          Best wishes
          Steve - Community Advocate

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