A.S. Face 1113: T.L.


I am Therese, I’m 30 & from Scotland. I have AS.
My story begins sometime in 2004. I had been travelling in Italy & returned home due to a health scare with my heart. I was only around 20 but began experiencing pain in my chest/sternum. I was hospitalized several times. I had a very fast heartbeat & was put on a short course of beta blockers.Eventually things settled for a while until I moved house.  I began finding it hard to sleep & would wake up at all hours in pain in the middle of my spine/shoulder blades. It would take my breath away & I would also experience rib pain/severe spasms. This continued for several years & I tried different beds & anything I could to try get a decent sleep. By 2007 I was about to start university to become a nurse. I did well in my first year but by the end of the shift I couldn’t walk & shuffled home. My lower back felt as though it had snapped and I had terrible sciatica. I also broke several bones having clumsy falls & then during this period my partner of 9 years also cheated on me. I was heartbroken & even more when I found out I was pregnant.Things got worse when I found out my partner had continued his affair even as we tried to work it out & I lost our baby.Finally he broke up with me on my birthday a few months after.A week later I had an accident & ended up with a broken leg/ankle and needed surgery to repair this with plates/screws.
My recovery was slow both physically & mentally from the past year & the events. I had to leave university but hoped one day I would return. I began to recover but was still suffering from debilitating sciatica.My GP prescribed painkillers.
I suffered from PTSD & depression for several years as well as battling with pain in my lower back, neck and being unable to walk & sleep. I had pain all over and was sweating at night while in pain. I began having regular blood tests that showed a raised CRP & ESR this continued for a couple of years. I also began to suffer from frequent kidney infections & was passing blood. A scan showed some calcification in area I had pain. The back pain continued even after the kidney trouble had faded & it became so bad I couldn’t sleep or walk. My blood test still showed high ESR & CRP. I had several autoimmune tests also. Eventually I couldn’t go on anymore. I made an appointment with my GP again & seen a locum. She referred me straight away to rheumatology. I waited nearly 9 months to be seen & when I got my appointment I was thrilled however I came out my first appointment in tears. The consultant made me feel stupid. Said it was muscular & more than likely due to depression. That I had to go back to work & come off all my medication. When she examined me & touched my lower back I hit the roof. She told me I was overweight & she thought this is why I had mechanical back pain. She said she would do some more bloods & an MRI but wasn’t expecting it to show anything. Fast forward another 3 months & a friend came to my appointment with me.I seen the same consultant looking at the computer as I waited outside.She asked another consultant & nurse to join her.They gazed at the screen & then the nurse came out to ask if I had children.I replied no.Eventually they finished speaking.I was called in & the consultant said she had reviewed my notes, my MRI scans & bloods. My MRI had shown some inflammation in one of my SI joints. The other consultant thought it may be AS but they both agreed to wait for 6 months & do another MRI but under the other consultant who ran a spondylitis clinic.I had the genetic blood test done and some other tests repeated before leaving. Time passed in a lot of pain.  I was due to see the consultant. I had to waited another 7 months by this point and I was barely able to walk at all this time & suffering but I was excited as I would get to attend the spondylitis clinic & see the new consultant.I turned up only to be told that the clinic had been cancelled & I would need go wait another three months.I begged for help but it did no good. I was given his assistants number & that was that. I left the hospital in floods of tears limping to my taxi. I rang family and howled down the phone. When I got home I rang the consultants assistant who gave me the nurse help line. I left a message explaining what had happened about my appointment & I was in tears explaining the pain & suffering. I got a phone call back shortly after and spoke to the nurse in charge. She apologized & said she would arrange an emergency MRI & a new medication for me to try Arcoxia( unfortunately it caused heart problems for me).I got a call a week later for my MRI.I still couldn’t walk very well & the MRI was agonizing but I did it.A few weeks past and I was still struggling and had another two months to wait.I called the nurse help line again and spoke to the same nurse.She said I have great news.Your MRI showed severe inflammation in both SI joints as well as in your sacral area.She said you have degenerative discs in lower part of spine also.
She said I think it’s what you need for your diagnosis.
I managed to make it to November 2013.I was called in to the DRs office.He explained my results & told me it was AS. He explained the disease and the medications etc.He said that as I had tried most of the NSAIDs I would be eligible to try an Anti-TNF called Humira.He told me all about the drug & gave me some leaflets.He said he would arrange to see me again in a month & in the meantime to think it over.I did.I discussed it, researched it & decided the benefits outweighed the risks for me. On Jan 2014 I began my Humira injections & by May 2014 I had very little symptoms. By June the consultant was happy & so was I.My flexibility had improved & my quality of life.Unfortunatly now the Humira is not working as well & im experiencing other health problems.I am back to having a lot of pain/flares and I am due to see consultant again asap. Im hoping for another miracle. So I am one of the faces of AS and I am a warrior. I fight this everyday alongside my fellow AS buddies. I didn’t choose this disease but it chose me & I wont let it win or define me! I love life & I am going to live it!

Scotland, United Kingdom

One Response to “A.S. Face 1113: T.L.”

  1. Dear Therese,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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