I think I have as

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Ive been having symptoms that i think are AS. ive had lower back pain with the bottom of my spine being sore to touch and then i developed butt pain that felt burning and the butt muscles were also sore to touch. And the front and back of my thighs would hurt sometimes. i was diagnosed with piriformis syndrome but afterwards my hips started to hurt. It started when i was sitting on the bed. The hip pain alternates sides and my lower back hurts again and it was sore to touch where the si joints are( i think). I also sometimes have sore legs when laying down and weakness in the knees (this started a couple years ago).Another new symptom is pain in the foot like the toes and the front of the ankle. Another thing is that i am a hypochondriac and will think the worst with any new symptoms. Ever since giving birth 3 months ago ive had multiple things and had numerous tests done including a Ct of the whole abdomen and pelvis. Nothing was found except my scoliosis which is already known. After being told I have piriformis syndrome, i started worrying about a mole and then the next day i felt like my arm bones were achy and freaked out about that too. Then i started getting random itches everywhere and shallow breathing and slight palpitations mostly in the mornings and tingling in fingers and feet. I talked to a doc about these symptoms along with the hip pain and he said there doesnt seem to be a connection. I was referred for a heart monitor because of the palpitations and i noticed my ribs were sore when the nurse was putting the sticker on for the Monitor. Then i noticed my ribs are sore to touch in different areas. I believe the itching breathing and palpitations are anxiety related because ive noticed the itching is calming down because i was able to calm down. The palpitations and breathing issue is decreasing too. The tingling could be anxiety as well but that could also be AS. I dont think anxiety can cause everything else. The other symptoms sound like AS. But i had a ct so im confused. can AS not be seen on ct? I also have eye inflammation that looks like uveitis going on since 2017, my eyes will feel inflamed and i have to close them. When i look in the mirror i see red lines in the whites of my eyes. Sometimes my eyes actually hurt. This comes and goes, which makes me think AS even more. Plus i have ibs and gerd, according to doctors.

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  • Posted

    I'm sorry to hear about your problems.

    It will be hard even for the doctors to quickly establish or abandon the AS diagnosis. It takes time and a lot of tests and hits and misses. What the scans can show you is the damage to the joints caused by the AS. If you haven't had it for a long time, hopefully there will be nothing there.

    But there is something you can do relatively fast:

    • For your eye problems I'd suggests seeing an ophthalmologist. He will confirm or hopefully reject the diagnosis of uveitis.

      • change your diet: AS symptoms could be managed with no starches diet (google it) which also prohibits dairy and processed foods, among other things. Be careful how much salt you use. You mention IBS, well autoimmune diseases are connected to your gut and bacteria balance.
      • Avoid NSAIDs. They are bad for your digestive system.
      • exercise (yoga, pilates, swimming...) walk at least 30 min a day. Even when it hurts. But do not exhaust yourself.
      • control stress (e.g. meditation and visualization).
      • try turmeric with pepper supplements against inflammation, Omega 3 oil, Boswelia

      If you react well to the diet I mentioned, there is a chance that you could have AS but it is by no means a guarantee. This diet helps with other conditions as well.

      It took years for my AS diagnosis to be confirmed.

      I managed it with diet, lifestyle changes, but, there are new things I learn regularly. Most recently I realized that and AS flare up could be triggered by an injury or an inflammation elsewhere in the body (e.g. gum disease or a hand injury). So, unfortunately there are no easy, permanent solutions as there are no tests that can confirm or deny the AS diagnosis before the damage is done. I do not have the gene usually linked to AS and Chron's, but I have the AS anyway.

    So, be patient and determined. While you're waiting for the doctors to their jobs, do what you can for your own well-being.

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    • Posted

      its just frustrating how long it takes. So by the time people are diagnosed with it, they have already had it for years? Thank you for the suggestions, i will try those.

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    • Posted

      Exactly!

      I was lucky in the end that I have seen an open-minded rheumatologist, otherwise I might have been still waiting for the confirmation. Both times I had a flare up, I had also muscle spasms in my back., which are one of the most recognizable symptoms of AS along with the sacroiliac joint inflammation. But I also had some very atypical symptoms like wrist inflammation (and pain!), kidney stones (I later found out that this is not that rare with as)...

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    • Posted

      That is why it is difficult to diagnose. Right now my back is OK, but my right hand has been swollen and the pain and stiffness started spreading from the middle finger to others.

      Also, with AS my joints started cracking even when I do not have an episode.

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