21 September 2013
Hi there. My name is Danita. I am 39 years old and mother of three children between the ages of 7 and 15. I live in South Africa. I was diagnosed with Spondylitis early in 2013. I also have Hashimoto’s Thyroiditis (diagnosed March 2012).
My first memory of back ache was when I was around 10 years old. I remember not being able to lie flat on my back. I attributed it to a bad fall off a swing. The back ache recurred over the years. Growing up, I also had lots of pain in my legs but was told that that was growing pains.
When I was a teenager, I started having weird mood swings and prevailing depression but that was attributed to being a teenager. And so started my journey with psychotropic medication. It peaked when I delivered my daughter, 7 years ago and I was misdiagnosed with Bi-Polar mood disorder. I was on mood medication for three years following that, until I realised I was still feeling as bad or even worse than before the medication and Bi-Polar diagnosis.
After my daughter’s delivery (2006), I told my GP that I thought I broke my coccyx during the delivery. He laughed and said that’s impossible and that I must have sprained something. I followed up with him again, that time he had an x-ray taken of my coccyx and showed me that it wasn’t broken. I felt like a right idiot! The pain came and went and in 2011 my left leg started aching as well as my lower back. A neurologist did and MRI, saw a slipped disc and did a lumbar laminectomy. At the 6 week checkup, I told him that my lower back and my leg still ached like before the operation. I was told to lose weight and go to physio.
I was eating next to nothing (so diet was out – I just wasn’t hungry) and walking to my front garden was something I had to plan in advance because the fatigue was so severe. How was I going to lose weight? Physio helped for limited periods, but I needed my medical aid to pay for specialists. There had to have been something else wrong as well, of that I was sure.
So started a very frustrating 2 years of visiting different specialists. I lost count of how many, but there must have been about 15 different ones. I was diagnosed with stuff ranging from ‘stress’, to ‘a badly managed mental illness’ or ‘some weird panic disorder’. Oh, and I was too fat and needed to go to physio. The doctors just kept on looking at me like I’m a hypochondriac that is looking for painkillers. But something inside me told me not to give up.
In 2012 an endocrinologist diagnosed Hashimoto’sthyroiditis. A LOT of my symptoms cleared up after that was treated. But then the joint aches flared up badly like I’d never known before. The endocrinologist referred me to a rheumatologist. By that time, I had severe burning, buzzing pain in my neck, shoulder, hip, knee, ankles and coccyx, mostly on the left side and severe fatigue. Having delivered three kids, I know that I have adequately explored my pain threshold, but nothing holds a candle to Spondylitis pain!
June 2012, I started seeing my current rheumatologist. He is a very good doctor. By January 2013, he finally gave it a name: “Ankylosing Spondylitis”. My blood tests were negative for everything: RF, HLAB27, ANA, CRP, ESR. So I have seronegative AS. I have to just take a moment to acknowledge how difficult this must be for any doctor to diagnose. Thank goodness for medical science in 2013!
Since June 2012, the rheumatologist has prescribed different NSAID’s and DMARD’s. Some worked, but only for limited periods. I have now started Enbrel three weeks ago, and finally have some hope of being employed again and having a life again at some point. My pain is manageable, finally! I am grateful for everybody on for this site, that kept my hope alive and alwayswill. I now know that I never have to stand alone again.
Thank you for letting me tell my story.
South Africa, Africa