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Ankylosing spondylitis

Posted , 5 users are following.

eran36761
eran36761

hi im 29 years old female and i have been having chronic back pain for about 5 months and deep buttock pain. My x rays shows sacroilitis and mri is pending. Can i know how the early symptoms for ankylosing spondylitis presented for some of you? 

0 likes, 6 replies

6 Replies

  • jjn80
    jjn80 eran36761

    Posted

    Hi there! I'm 35 female. Been dealing with SI joint (sacroilitis) pain since I was about 28-29. Got final diagnosis of AS last year. It can take years to diagnose! Started with the buttock pain. At the time, I didn't know what it was. Doctors just chalked it up to a pulled muscle or over doing it at the gym. The pain went away for a while and only came back mildly and for short periods. Never bothered me enough to continue seeing doctors.

    Over the last 3-4 years, I noticed lower and mid back pain and stiffness; worse when waking in the morning. Again, it was nothing too concerning as I was on maternity leave and thought it was strain and "wear & tear" from lifting a newborn and having poor lifting habits. MRI showed nothing much. The stiffness continued and NEVER went away. Last year was when the pain really started (...and continued). I had excruciating pain in my buttock. I then started going back to doctors. Had X-ray and MRI. Tests showed sacroilitis. I was referred to a rheumatologist. It was then I was diagnosed with AS. I've also had 7 episodes of IRITIS (inflammation of the eye). Apparently 30-40% of people with AS also have flare ups of iritis. This also helped my diagnosis. I've tired several anti- inflammatories. Currently on Celebrex 200g twice a day. I don't feel it's working and I am considering a biologic (Humira, Remacade, etc.) Let me know how your MRI goes.

    • eran36761
      eran36761 jjn80

      Posted

      Thanks for the reply. I will definitely keep you updated. I also thought initially its due to lifting my baby but then the fatigue started and my crp and esr was continuously high which lead to the x rays. I have family history of inflammatory bowel disease as well. I will get back to you with my mri. Fingers crossed
    • jjn80
      jjn80 eran36761

      Posted

      Oh...and yes! My CRP is high too. Your doc may also order the gene HLA B27 blood test. It's a gene marker for the disease. Oddly enough, I tested negative for it. My diagnosis was strictly from all the other findings from tests, symptoms, etc. Not everyone that has AS tests positive. And some can actually carry the gene and never develop AS. The body is a strange thing...!

  • gloria55119
    gloria55119 eran36761

    Posted

    Hello eran..I experienced low back pain nearly 30 years ago...it gradually worsened over the years to the point where I was unable to function. Then it got better with acupuncture and after some time it crept back in again. Three years ago the pain was so bad down the right side of my body and legs. Then pain in the neck and many sleepless nights trying to get comfortable enough for a little bit of sleep. I had an MRI and other Xrays which proved AS...The pain never really goes away...you just learn to live with it...with help from medication etc.

    I am now using a wheelchair for anything more than a 10 metre walk...and cannot stand for more than 10 minutes and the same with sitting in a chair..ten minutes max...then I have to get up and move position. There are times when it seems so bad that I cant go on with it...then it gets a little better and the roller coaster continues...up and then down. I bought a foam overlay for my mattress which did help a little...two walking sticks to help get me to the bathroom..and a plastic chair to sit on under the shower. I have been to specialists in Indonesia and Thailand but cant afford to spend any more money on hit and miss treatment. I can now manage the pain with meds and rest and a strong attitude to help me through it. Let us know how you go with the MRI...it should show the extent of the damage...keep your chin up..help is on the way. Gentle hugs to you.

  • jillian41791
    jillian41791 eran36761

    Posted

    Hi Eran,

    Mine was exactly the same as you described and I used to have bouts of extreme chronic fatigue also. I struggled with my job in disability care for over a year until I eventually had to resign.

    I haven't worked in paid employment now for 12 months because of juggling pain, anxiety and depression and home life with husband has been a real struggle also.

    I'm gradually accepting it but still want my old life back but that's not going to happen.

    If only we didn't have a financial debt still with paying off our farm, the stress would be much less!

  • eran36761
    eran36761

    Posted

    Hi guys, thank you all for replying. I did the mri today. The report will come in two days. I will know more then 😞

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