New here. Let’s chat

By Hoosierpianist Latest Activity February 18 at 9:22 pm Views 2,657 Replies 3 Likes 1


I was diagnosed with AS three years after I started showing symptoms. It all started when I was playing soccer in ninth grade. I got a cold that turned into pneumonia because I was stubborn and wanted to keep playing soccer, and a few weeks after that pneumonia began to subside, I started getting an intense pain in my hip. No amount of stretching or physical therapy would help, and it seem to go away and come back at the strangest times. This happened for a few years until I got the official diagnosis along with information that I tested positive for the HLA b 27 gene. After being prescribed with some pain relievers, I was instructed to try a medication called Simponi. I was on this for 6 months. It consisted of I jextion from a device that looked like an epipen.

Two years later and nothing has changed. My pain comes back sometimes randomly, and sometimes expectedly, like when I sit on the couch too many days in a row or sleep in for a long time too many days in a row.

As of now, the pain is only located in my hips. It goes back-and-forth, sometimes in my left and sometimes in my right, but never at the same time strangely enough. When A flareup happens, all I can do is wait for it to go away. I seem to always forget what it feels like to not be in pain when I am in a flareup, and as it so happens, I am in one right now and it has led me to this website for answers.

I’m 20 years old and I get so embarrass when I tell people that I can’t play basketball or something with them, even though they just saw me walk to class (obviously I’m fighting through the pain). My boyfriend doesnt understand it and doesn’t always believe me when I tell him I’m in pain. Honestly I’m just scared that it’s going to get so bad that I can’t be as active as I like to be when I’m not in a flare up. I love basketball and soccer and futsal and I hate having to go easy during a flareup.

If you have any comment as to what i just said, please do shoot me a reply. I’d love to hear from someone else with AS. I don’t know anyone besides myself with it.


  • Report Report as inappropriate
  • Share
    Email Email
    Print Print Twitter Twitter
    Facebook Facebook

Replies (3 replies)

Add your reply Reply Down
  • Dr Gary
    Dr GaryCA April 28 at 8:46 pm   

    HI Giselle, it's really nice to meet you. I appreciate that you found your way to AS Connect, and that you took the time to tell you story. Sounds like you are dealing with a lot. It's hard to cope with pain that comes out of nowhere like your pain does. I am a therapist and not a doctor, so I don't have any helpful medical advice. My clients often talk to me about feeling misunderstood. I just think no one really understands what it is like to live with pain if they haven't actually been through it themselves. I encourage you to work closely with your healthcare team, which I suspect you already are. You might also consider getting some counseling. It might help to sit down and talk with an objective listener about what's going on and get some additional support. I am sorry you haven't received any replies to your posts. But I am always around, so feel free to reach out. Take good care of yourself, my friend, and stay in touch!