Possible AS? Advice would be appreciated

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Hi, my name is Harmonie and I am 21,

I have experienced joint pain all throughout my life. As a teen, it was growing pains, later, I think as diagnosed with celiac disease and Hashimoto’s thyroiditis. I have had many blood tests to rule out any type of arthritis or inflammation.

My Doctor told mea couple of years ago that I Carried the HLA B27 Gene. I have also done ANA, CRP, and other antibody blood tests, but seeing as I have 2 autoimmune conditions, it’s hard to tell sometimes where the inflammation is coming from. She had originally told me that I also tested positive for lupus. But after seeing the rheumatologist, (I believe this was 2 years ago)  he said that I did not have lupus but he could not rule out any answers in regards to my joint pain. I didn’t have any lower back pain or stiffness back then.

Anyhow, I’ve learned to live with it, it’s not always present but I find it’s quite noticeable during temperature changes or if I have been upright a long time.

Anyways, recently for the last 3-4 months, I have noticed quite a stiff sensation in my lower back and if I apply medium pressure or get my back (lower back ) rubbed, it is quite tender/ sore.  AS has silently been at the back of my mind but I’m just not sure if I am overthinking it. I do find it more still in the morning and at night, and a couple of days ago, my left butt cheek was sore as if I had done heavy excercising but I hadn’t excercised for 2 days.

I have found the back pain and stiffness less significant when I excercise.

Anyhow. I have booked an apt with my Dr and am hoping to get a more recent blood test done to see if I am hallucinating or not!

I would love some opinions and advice! 

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9 Replies

  • Posted

    AS is notoriously hard to diagnosis.  Especially online...  Any MRI or nuclear study of SI joint? That I'm told is the gold standard for diagnosis. Not just pain there, or stiffness, you have to show actual changes.  Of course pain and stiffness, (especially in the a.m.) will get you on the road to diagnosis.  Only those specific x-rays (not just "regular" films) will get you the diagnosis of AS (when they show inflammation in SI joint).

    Good luck on your journey to find answers and get effective treatment 

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    • Posted

      Hi pat,

      No MRI or X-ray yet. At the time of the Rheumatologist, I was not experiencing any back pain. But I had extensive redness and pain around my hip bones, but significantly in the knees and hands.

      I have booked an appointment with my doctor and plan on expressing my suspicion/ concern. Hopefully I will get a referral for an X-ray or MRI

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  • Posted

    Hi Harmonie, 

    Yes, Pat is correct. If it is AS, it can take years for some to have the necessary SI changes for a diagnosis. 

    A very small percentage of people with the hla gene develop AS.  Your pain descriptions can describe other conditions as well.  There are so many...   Is the pain primarily in the joint or soft tissues surrounding the joint?  Could it be muscle pain?  Any fatigue?

    You mentioned pain in the buttock. Hip joint pain can cause that, but so can fibromyalgia.  Fibromyalgia is also an autoimmune disorder, it targets muscles. . And it responds very well to exercise.  

    I hope you can find some answers with the doctor. 

    In the meantime, you might benefit from alternating ice and heat on the area, keeping active with low impact activities. And, a healthy diet can be a tremendous benefit!  Good luck!

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    • Posted

      Hi Cathleen! It is mostly not in in my muscle, it is almost directly where the two lower back dimples are. I don’t believe it is muscle pain because I have been dealing with joint inflammation for several years already and believe this pain and stiffness is in the bone itself. The pain occurs when I bend down and is prominent in the morning/ early afternoons.

      My fatigue has been present off and on. But with the Hashimoto’s thyroiditis, it is common to be tired- although I have medication for it.

      Thanks for your input!

      I am going to my doctor next week to discuss. As I don’t want to get ahead of myself. But have a strange feeling that Something more complicated is going on.

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    • Posted

      Follow up with your doctor and do what you can to keep yourself healthy. 

      I’ve made significant lifestyle changes over recent years and my prognosis has dramatically improved.

       You have many years ahead. I hope you’re able to enjoy a happy, pain free life!

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  • Posted

    Not sure if you are still stuck without answers but if it helps I am 24 y/o female recently diagnosed. 

    All my life I had lower back pain/hip pain and just associated it to whatever sport I was doing or just brushed it off as normal. about 1 year ago my left wrist lost range of motion and had severe inflammation, originally MRI showed synovitis and I was sero-negitive for RA factor in blood work. Once I addressed how sore my lower back was my rheumatologist suggested an MRI of my entire spine to rule in/out AS. At first thought it seemed a perfect fit I had all the symptoms. On second thought it is so rare I just couldn't imagine this being the cause of my pain and also felt I was crazy and just diagnosing my self off google. 

    Moral of the story, you know your body better than anyone and trust your gut. Make sure to see a rheumatologist and express your discomforts and concerns. An MRI of your spine specifically for AS is the only way to be sure. Mine was confirmed in the iliosacral joint. 

    My only time with severe pain is when I lay down on a very flat hard surface my hips fell painful and stiff almost like they need to be cracked. If this is anything like what you feel I highly suggest talking to your rheumatologist or requesting to be seen by one. 

    Best of luck and hope you find relief soon!

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  • Posted

    AS can affect any joint, not just the spine. It also attacks tendons and ligaments. I had more all over body pain than back pain prior to diagnosis.

    It's also not that rare. It's more common than rheumatoid arthritis.

    You should ask for an MRI.

    Diet changes and exercise is helpful to manage AS. Look up specific diets for AS and look into supplements too like turmeric vitamin D and magnesium.

    Exercise is very important too.

    Good luck ?

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