A.S. Face 0451: Etaine Connolly

Trials & Tribulations of Ankylosing Spondylitis

My name is Etaine Connolly I’m 32 years old and live in Ipswich Uk.

Well my story starts when I was 18 years old, it started with back pain at night that would get better over the next day, the doctors said it was due to my rather large chest and as I was overweight, so as you do I trusted my doctor and carried on through the pain.

I was in and out the doctors complaining that the pain was stopping me sleeping and that the painkillers helped take the edge off, but it wasn’t going away, I was sent home with different painkillers and advise on dieting.  I lost weight and my BMI was in range, I was still a bit on the heavy on the chest side, so was told I had to put up with it,  only now I was noticing rib pain which the doctors put down to asthma.

At 20 I had my fist Flare up off Iritis I thought I had an eye infection and tried treating it with over the counter medication, after 2 weeks it wasn’t getting any better so off to the GP I go.  Luckily for me (so I thought at the time) one off the GP’s was an Ophthalmologist, he diagnosed me with iritis and treated me accordingly for the next year I had so many flare ups I lost count.  My Doctor gave me his mobile number and outside of GP hours if I had a flare up he would see me urgently.

It wasn’t until my GP was on holiday that I saw a different doctor who sent me to the hospital emergency eye clinic to be seen, the Dr was shocked that I hadn’t been seen before and that my GP had been managing me.  He then started to look into my history and my flare ups.  He sent me for an x-ray and bloods whilst I didn’t carry the HLA-B27, the x-rays showed I had arthritis of the sacroiliac joints.  A referral went in to see a rheumatologist whilst I was waiting for my appointment I went to give blood as I did annually, only the initial blood test flagged up there could be a problem!  My GP sent off some blood work which he said these things happen all the time; I would be a bit anemic and try not to worry.

So I went to the hospital to have my blood taken and 3 hours later I was at the cinema when my GP called, my blood work show I was dangerously low in my Vitamin B12 and that I needed to come to the surgery for a emergency injection, where I will need one every day for 2 weeks, then there after I have one every 12 weeks for the rest of my life.

A month later I went to see the rheumatologist who strips me down to my under wear and measures every part of my body and looks me up and down, still I’m feeling a little uncomfortable then says hmmm, I’m now aloud to get dressed and after telling him my life history he orders uss, x-rays, MRI scan, flexi sigmoidoscopy and every blood test under the sun.

2 weeks later he tells me I have AS of course I had no idea what this was or could be, hadn’t even thought about searching the internet as we would do now of days.  My first thought was I’m going to be like the hutch back of Notre dame but after some research and seeing the physio I knew my brain had been running on over drive.  Oh and I have I.B.S. which can be common with people who have AS.

So my spine has some lower curvature and my rib cage is more or less fused I managed to part take in Anti TNF drug trail, which worked well my measurements improved and pain and flare up’s ease,  I was upset when the trail ended.

I tried getting my local PCT to fund me taking it but I didn’t meet there criteria?  I find this more than frustrating.

In the Last year my fatigue hit an all time low my GP tired saying I was depressed, After assuring him that I wasn’t he run a load off blood test’s which showed I have anemia, and very very low vitamin D levels.  I started an intense course of treatment which would come up in the normal levels but would drop again.

After expressing deep concern with my GP she reluctantly referred me to a gastroenterologist who put me forward for an colonoscopy, which I had this month and Thanks to my lovely AS I have Crohn’s disease which would explain my malnourishment and bowel habits.

Without the Support Of my AS friends on facebook I think I would have been driven mad by now!

Thank you every one for all your help and support

Love Etaine X

Ipswich United Kingdom


2 Responses to “A.S. Face 0451: Etaine Connolly”

  1. Dear Etaine,
    Thank you so much for sharig your story with us.
    Sincerely Cookie

  2. wow, you sound almost like me only lm undiagnosed cos the mri didnt show the damage at the sacroiliacs…. my chest is really bad but lm goign round in circles .. still!!!!! despite a handful of medical people saying its AS AND DUE TO THAT STUPID MRI OF ONLY THE SACROLIAC AREA… lm back to square one.. lve since learned the damage tends to show in the CHEST FIRST with women…. l guess l will have to wait…….. glad your diagnosed now it sucks though x

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