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Do my symptoms match with AS?

Hi, I’m new here 😀. I’m wondering if anyone can relate to the symptoms I’m experiencing?

For around 2 years, I’ve experienced pain intermittently in my lower back; it would come and go until around one year ago I had a severe flare up. It was excruciating and I couldn’t really move. It soon settled down and reverted to smaller , less painful flares.

Early this year, the pain returned badly and it really affected my mobility. I struggled with walking, sleeping and I was very stiff in my lower back; this lasted for around 8 weeks with varying severity before disappearing. It then flared up again around 3 weeks later but less intense.

The pain feels like it’s in the sacral region on my left side. In addition to this, I have pain in my toe joint, ankle joint, wrist, tender heels, Achilles’ tendon and one of my knees (in the ligament next to the joint). I also suffer with fatigue.

Pain is worse at night, especially when lying on the affected side. I’m quite stiff on waking but it eases as the morning goes on. It worsens again with too much walking or sitting.

However, I do not have fever or eye problems.

I don’t want to look silly asking for a referral to a rheumatologist. I’m already diagnosed with ME/CFS.

Does this sound anything like AS?

  1. Hi there, and welcome to the site! It sounds like you have definitely come to the right place.

    Personally, I have experienced every single thing you have described almost to a T. The severity of pain is always changing which is why you will see a lot of people here (myself included) talk about how AS is a dynamic disease/disability.

    Other than the back pain/stiffness and constant unpredictable flare ups, I also have severe pain in my toes, ankles, achilles tendon, fingers, wrists, neck, knees, well... actually just about every joint at this point. I also now suffer from severe GI issues as well.

    For me, the pain in my toes and fingers has been confirmed by x-ray to be bone spurs which also causes tendonitis in some cases. In a few of the joints at the base of my toes there are small, hard bumps and the tendons are bright purple and swollen. They also bruise from the inside out if I do too much walking or step the wrong way. This is all caused by my AS.

    I definitely don't think it would be unreasonable to request a referral to a rheumatologist at this point based on your experience and description of symptoms! I hope you are able to get a handle on your symptoms and get some relief soon! Please let me know if there are any other questions I can answer for you!

    All my best,
    Katie, Team Member

    1. We're so glad you found this site!
      As Katie mentioned, many of the symptoms you've shared have been experienced by others in this community.
      Although there is no single test to diagnose ankylosing spondylitis, I thought I'd share this article that may provide some helpful information:
      Wishing you all the best in your search for some answers and much-needed relief,
      Doreen (Team Member)

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