A.S. Face 0244: Penny

Hello, My name is Penny I am 27 years old and I am from Melbourne Australia. I have AS. My pain started in 2002 when i was pregnant with my son, I would have trouble standing after sitting for a period of time. Walking at this point was only painful after i had been sitting but once i got going the pain eased. I had a ‘flare up’ (as i now call it) and went to a Physiotherapist who told me i had sciatica due to the pregnancy. I spent the next few years putting up with the pain, getting in and out of chairs was very difficult but i had my little boy to raise so I just ‘got on with things’. I had scans and x-rays overtime but I was told there was nothing wrong. The pain became unbearable when my son was about 4. My boyfriend at the time would sit with me as i screamed and cried in pain. I couldn’t describe Exactly where it was but it surged all the way from my hips down into my feet, there was no position i could lay in that could give me any comfort. I went back to the doctor who prescribed Mobic and orded more xrays, and an ultrasound. Nothing.I also saw a chiropractor who kindly took my fathers money and ‘treated’ me for 10 weeks only to tell my father I needed psychological help because there was nothing wrong with me physically. The doctors words to me “take these (mobic) you will be one them for the rest of your life” But why?? I was also told to walk as much as i could ..”but i cant walk!!”. So i took the Mobic and rested until I could walk (without excruciating pain) and when I could I walked for hours, and jogged and even when it hurt like hell I kept walking. In 2010 I started getting headaches (or migraines without the black vision). this went on for 2weeks ( silly not to go to the doctor but I needed to work) Until my eye became red and really sore. I went to the doctor and i was given some drops for an allergy related problem, within 24 hrs i was back at the doctor where i was told i needed to get to the nearest optometrist for an examination. Before I knew it i was at the ear and eye hospital, having blood tests and being told i had Iritis AND I am HLA-B27 positive. I was done with my Doctor at this point and started to see someone else who made the connection to AS and sent me to a rheumatologist, I had more xrays and an MRI and there was the final diagnosis. The pain is now in my ribs and waking up is the worst part of my day, if i wake in the middle of the night i have to get into a hot shower to ease the pain I also take Tramadol at night and Panadol Osteo during the day, Im also on Naproxen and Nexium.
❤  Pen  ❤
Melbourne, Australia

7 Responses to “A.S. Face 0244: Penny”

  1. Thank you. So sorry for your pain.

  2. Dear Penny,
    Thank you so much for sharing your story. It seems to be common for women to be brushes aside, feeling what is wrong with us is emotional or hormonal. Such a shame that even today, this still happens. Maybe one day we will make a difference in this. Here is to hoping we do!
    Sincerely Cookie

  3. Thanks for sharing your story. Like most that have posted I also went through a long period of time without knowing what was wrong. I’m glad you had someone supportive with you while it was figured out.

  4. I’ve had some relief with Simponi…I’ll post my story some day…I hope you find some pain relief….an anti depressant may help also…for the feelings of dreading waking up….

  5. Thanks Again for sharing your story i also have a/s & have had more bouts of irisitis i can remember, Im now on daily pred forte drops daily along with 178 pills a week excluding pain relief, I have a walker & other mobile aids around the house & im only 39. I also have the HLA B27 positive & have Ulcerative Colitis which is apparently linked. Please know your not alone. As thats how i felt for ages, If you ever want to chat look me up on facebook {Fe Miller, Dunedin, NZ}

  6. Penny your story brings back so many bad memories of when this all started for me. My AS started in my hips and also progressed to issues with my eye. I can attest that getting steroids injected into your eye socket was no fun at all. The screaming, excruciating pain is so familiar. Thank God you had someone to help you through those tough times. Naproxen, Weekly Hunira Injections and daily exercise help me a ton. Hopefully you will find the right combination that gives you some relief as well. Its still a daily struggle but much better than in years past.
    I know how hard it is but keep your spirits up and keep fighting. Last year I couldn’t walk through the Mall with my daughter now i’m running a 5k. There is hope, good luck to you and thank you for sharing.

  7. Thank you all for your feedback 🙂

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