My Journey with Ankylosing Spondylitis
My Name is Gillian and I live in Bromley Kent. l have two sons Mark and Lee l started to get pain and stiffness in my lower back and neck in my early 20’s. Then soon after my youngest son was born in 1978, it was getting worse.
Over the next few years l was constantly at my GP’s surgery complaining of this unbearable pain and terrible fatigue l was feeling. He was in his early 30’s and not long out of medical school , so looking back now how come he did not suspect Ankylosing Spondylitis as l had all the classic symptoms. Each time l visited him, he would write me out a certificate to stay home from work and tell me to have had bed rest. l would tell him that resting in bed made my pain and stiffness worse, also that l knew my own body and knew something was seriously wrong with me. He eventually told me it was all in my head and there was nothing wrong with me and l needed to see a psychiatrist.
Left searching for a diagnosis, living in immense pain
l think he came to the above conclusion after my neck was put into a collar and l was given traction on my back. He did not believe me when l said it had made my pain worse and l was very very depressed because l was not sleeping because of pain, and l thought l had cancer of the spine as l was losing so much weight.
l started to question myself and thought maybe he was right, it was all in my head. The back pain was due to my life style, as l was raising two sons alone as my marriage had broken down and l was working part-time.
He refused to treat me anymore and l had the ordeal of finding another Doctor (which was not easy) l was taken on a 6 months trial basis and this Doctor continued to be my Doctor for the next 25 years till he retired last year in 2011.
When my ex husband used to come and pick my sons up he would say ”Gill stand up straight you are stooped over ”. So my posture was changing and l was in unbearable pain by this time and was only getting about 2 hours sleep at night.
An official diagnosis: Ankylosing spondylitis
l had to rely on my ex husband to help me with raising my sons as l was in no fit state to do this alone. At times l felt like taking the pain killers and other drugs for depression l had been given to end this pain. But that would have been a selfish thing to do as my pain would have been over but l would have caused my sons a life time of pain.
My new Doctor listened to me and sent me to have x-rays and a blood test and the result came back that l had Ankylosing Spondylitis and l was HLA-B27 positive. I was scared as I had never heard of Ankylosing Spondylitis but l was also relieved to have a diagnosis and to know it was not all in my head.
l had to wait 3 months to be seen by a Rheumatologist at my local hospital and was left to get on with my life living in constant pain, l was working at a private hospital but had been off sick for a few months and it was through a pharmacist there that l was put in touch with a Rheumatologist that looked after me to the highest standards for over 25 years, but sadly like my family doctor he also retired last year 2011. He referred me to the Royal National Hospital For Rheumatic Diseases in Bath and they have also looked after me for 15 years to the highest standards. l am fortunate enough to attend the Bath AS courses at the centre of excellence at Bath.
l was taking Phenylbutozone and Sulphazaline and was worried about what effect they would have on my stomach.
Through being treated at Bath, l was asked if l would like to do clinical drug trial for TNF inhibitors as l reached the criteria to take part in this trial , l will put a link for you to read the rest of this next chapter for yourselves:
- Denial of 'wonder' drug could leave mother suicidal, News Shopper
- Interview with Gillian and the local news, YouTube
Surgery: Improvements in my quality of life
In 2009 l had major spinal correction surgery because l had great difficulty in holding my head up and my quality of life and mobility was going down hill fast. The result of the surgery has made a huge difference to my quality of life and my mobility and l can cope with what pain and discomfort I have living with this chronic condition.
My youngest son had a car crash when he was 18 and the tests come back that he is also HLA-B27 but so far he has no signs of having AS but he has inflammation of the bowels. My eldest son has no signs of having AS.
It is so important to me that the younger generation get early diagnosis and the best treatments possible for them to live as normal life as possible. My biggest blow was when l was medically retired from work in 1999. l campaign and try to support people with AS and find this is rewarding when you can help others. You may find this link useful: National Axial Spondyloarthritis Society
l have met many fellow Ankylosing Spondylitis friends when attending the Bath AS Courses and worldwide through Facebook and am happy that we can all support each other the best we can as it is only us with AS that know what we go through.
I have quite a few challenges to over come with this condition but I believe that these challenges have only made me stronger. Thank you for reading
Can you tell when a flare is coming?