A.S. Face 0518: Eve

Hello, My name is Eve and I was diagnosed with AS 3 days ago. It has been a long journey to reach this point. I first went to the Doctors at 17, promptly given some ibruprofen and told I was doing too much sport, I went as I was wondering why I ached every time I came to get up from sitting and felt so tired all the time. At 23 I next visited the Doctors complaining of bad back pain, I had just started my first job after Uni. I walked with a limp for a year as the pains would travel down my legs, I could not raise my arms to write on the board at work. I was told it was general back pain and sent to a consultant Oesto, who took x-rays and declared nothing wrong. The next 9 years were spent working with little sleep due to the pain, doctors refusing to give me any painkiller other than off the counter stuff and implying that I was making it up and that I was depressed. It made me doubt myself!

Eventually this year they sent me for x-rays again, however they decided this was normal and sent me to the pain clinic. It was a physio there that noticed the condition and requested a Rheumatology referral. The x-ray showed lots of damage in the SI joints (spine is perfectly clear) During this time I also got uveitis which has helped getting the diagnosis. On my second appointment they said I have AS. Sounds odd but was a relief to know I’m not making the pain up. One of my major problems has been that my bloods never show increased levels of inflammation, this has been a massive problem in getting referrals. I would be interested to speak to others than have normal inflammation levels but have been diagnosed with AS.

I am a massive sports fan, I play netball 4 times a week at club level and live in the gym when the pain is not too bad, I think that this has helped me greatly, I am hyper-flexible which is great as the loss of movement in my back is offset my my extra bendy hips and shoulders so I still have great movement. I used to be able to put my forearms flat on the floor when reaching my toes, now I can just get my finger tips there and in the mornings I’m lucky if  I reach my knees!  My Nanna has AS, people have always commented on how she was odd how she could be doing cartwheels one day then stuck rigid the next, now I understand how she feels. For me the worst parts are the not sleeping or being able to lie in, the fatigue and the fact that people don’t understand that I’m like an old person in the morning but can run around a netball court by the evening! I am 33 now, I hope to still be playing netball well into my 40’s 🙂

Eve x

United Kingdom

9 Responses to “A.S. Face 0518: Eve”

  1. Three days. And you’ve found the “right place to be” already. The wonders of the internet. Isn’t it wonderfull to find a diagnosis. Won’t it be wonderfull to start treatment to stufff the AS genie back in it’s bottle. Isn’t it wonderfull to have just met me (oops, that’s my blurting self-gots to stuff him back in his bottle). SEriously EVe, I hope you read these story’s, present, past and future, and find comfort in them just as someone today will read yours and find comfort. AS’ers rule!

  2. Hello Eve, I can relate completely to your story as I am, or rather was, hyper mobile too. It masked my spinal stiffness for a long time. I love that your Nana used to turn cartwheels despite her AS she sounds like a feisty lady.
    Best wishes, Gilly (526)

    • haha, yes she is feisty. I think the strain we have is quite a mild one, only seems to affect the women in the family. Sadly my little sister is also undergoing tests at the moment too. She live in NZ and like me enjoys the outdoor life ad is very active. Seems like being hyper flexible is actually quite a useful trait to have with AS and allows us to stay active more easily.

  3. Dear Eve,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  4. Hi Eve! My inflammation levels are never elevated either. My Dr. simply said that sometimes in some people, it just doesn’t show. Not the answer I wanted, but anyway. I do eat tons of anti inflammatory foods, I have all of my life, I happened to like them without knowing that they were good for me, maybe that’s it. If you get any answers, let me know please.

  5. Hi Eve,
    I can relate completely with your normal inflammatory markers as mine always result normally too. I have not yet been diagnosed with any spondylitis but suffer daily from aches/pains. My feet ache & swell – have difficulty standing up straight after sitting for extended periods – my pinkie joints are deformed – can not sit on hard services because of hip/buttock pain (that extends to the back of my thighs) – my outer rib cage sometimes aches. I also have ulcerative colitis (for past 23 yrs) and am on Asacol (an anti inflammatory Rx for the colon) and wonder if this has anything to do with my negative inflammatory blood tests. My rheummy ‘no’ and only says I have onset of osteoarthritis after a lumbar X-ray. She is reluctant to test gene because she says not everyone with the gene has AS – and I suppose I can understand her conservativeness as I would be hesitant to take RXs to treat AS that could cause cancer anyway (NSAIDs are a no-no for me with UC). Only have had 3 minor flares that put me flat in my back for a few days – otherwise my pain is manageable with exercise and good diet.

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