Living with Scoliosis Truelife Story

My name is Sue and I am from Walton on the Naze, Essex. Originally from Edmonton, London. I was diagnosed with idiopathic scoliosis only earlier this year 05’ I am 29.

It all started when I was 8 I was born with knock knees and one leg longer than the other and flat feet my Mum recalls me being in pain since 6 in my ankles hips and knees and the balls of my feet and she had noticed I was walking inwards and didn’t like wearing shoes as they always hurt no shoes seemed comfortable. My Dad got increasingly worried as I got older I was also complaining of a dull ache in my lower back, they had been taking me to the Doctors to make sure everything was o.k. And the doctor would repeatedly say these are just growing pains and as she gets older the pain will grow less, not happy my dad booked me into a chiropodist to ask for his opinion.

He got me to walk up and down the drafty corridors and then came to the conclusion that the problem will rectify quicker and my walking would improve if I did certain exercises and wore shoe moulds, which should aid better walking thus making all other pains to sort out, they were uncomfortable they rubbed and they seemed not to be doing the job after walking with plastic moulds in my shoes for as long as the chiropodist had said and exercising, It seemed to of made my walking a lot better i.e. I was not walking inwards as much as I was and tripping over my feet as much, but the pain in my ankles, hips, knees and back was still nagging and uncomfortable and Dad would constantly say sit up straight when I felt I was but when he stood me up and got me in a posture he felt was normal, felt truly uncomfortable and sometimes quite painful at times.

My Mum and Dad still convinced not all was well insisted the Doctor to send me to a specialist, when it came to seeing a rheumatologist, he tested my reflexes and pull and pushed my legs and back in to all sorts of positions and without tests he came to the conclusion knowing I had knock knees and such like declared I had growing pains and it would all settle down soon enough, to do regular exercise and to keep a good posture.

Come my twelfth birthday I was a very active sole, I used to dance and do pop mobility with my sister, I kept exercising kept fit ate well and danced all the time and I even use to do dance classes at lunch time for those who enjoyed dance, I used to do some moves that some others couldn’t grasp and I was very supple, but the pain use to nag and become uncomfortable and some nights were unbearable, kept going to the Doctors and he used to say you may have torn a muscle or it could be your growing pains as you are still growing.

I used to cry a lot with the pain and I was getting very depressed, some dance moves I could do I could no longer do and I was getting stiff and frustrated with myself, my Mum took me back to the Doctors and he said for me not to fuss and told my Mum was I the type to seek attention, as if I couldn’t hear him. My Mum was not happy so the Doctor sent me to another specialist an orthopaedic specialist, same thing happened though I was dealt with the same way told to not fuss and without x-rays or other tests I was told growing pains.

At sixteen it all got too much to bear, it felt that no one was believing me that I was in so much pain my mum was supported but my Dad was loosing patients with me and took the other approach “Its all in your head stop fussing” I become depressed, frustrated and I was not able to dance as often, I used to console myself in my room with only my poetry keeping me sane, until it came to the point I could not cope, I used to cry at the slightest thing and as I went to the doctor, he prescribed anti depressants and I was pushed aside as another messed up case.

Trying to get along in life, swallowing pain killers and my anti depressants, I got a job as a care assistant I loved the job and threw myself into the work and even done extra shifts, the pain was bad I soon took up drinking to numb the pain and proplus in the morning to keep me going as I did varied shifts I was juggling booze proplus and bought painkillers and was taking them like smarties. At eighteen my Doctor referred me to another specialist a neurologist this time and of course instead of growing pains, he declared it was all in my head, annoyed, I threw myself into my work, not even my Mum could console me, as it had got to the point I was starting to believe it was all in my head. My Dad made it worse we use to fight like cat and dog over matters of my health.

At 21 I had enough of London and I wanted to wipe the slate clean, get of the booze and drugs and start a fresh life at peaceful, tranquil Walton, I found a job as a care assistant, but it all went pear shaped. I am not going to go into lots of detail but apart from my agonising pain, headaches, depression, they did not seem to have time for the Elderly as much as my London care home I worked at and I was disillusioned with the whole system, at the age of 23 I had a nervous breakdown and I don’t remember much about those three years that came and went, I finally at 26 got back on my feet and faced the world, but my pain had spread from my ankles, knees, hips, back to know my neck and head.

I met my partner and he was very supportive and very understanding, I even tried to put him off me and declared I was a messed up individual with lots of aches and pains and depression and after sharing life stories, I found that he truly did care and loved me as much as I loved him but he was concerned that I was getting worse, since we first met and asked me to try for a second opinion.

I went to the Doctor a different Doctor to usual and he pronounced without tests that I had AS Ankylosing spondylitis, I was told to read up on it and tell my parents and family as it was genetic, it was very scary, but it was a relief I had not made the pain up in my head, the trouble was certain pains didn’t match AS and I was given strong pain relief but it was not responding how it should of if I had AS, concerned I asked for tests to prove this is what was wrong with me, the Doctor reluctantly referred me to a rheumatologist, I went to see him and to my disbelief with three x-rays of my lower back he pronounced there was no sign of AS, at the time, I was shocked he could tell without further testing then he came to the conclusion, it was down to my weight gain and depression and I had made myself ill, and that I should lose weight and mobilise myself more.

As I left the hospital, I was distraught. Mick tried to reassure me he was in the wrong and to go back, but I felt frustrated, rejected and confused and even when I did go back the Doctor shunned me and said there was nothing wrong with me and the x-rays showed no abnormalities.

Mick was there for me and persuaded not to give up and so we went private and saw a chiropractor, he looked at the so called x-rays from the hospital and sighed, your back is far from normal you have c shaped lumbar and straight away took an x-ray of my neck discovering that I had and s shaped neck down to my thoracic which then curved into a c shape in my lumbar it was so oblivious, that I had bi lateral scoliosis, and that it should have been picked up on when I was young, I was first cross and very upset, but at least it was not all in my head, he said it could have been not detected as it was bi lateral and it had sorted itself out in a way to keep me balanced, but the pressure had built up and had caused nerve damage and my neck was in constant spasm.

Thanks to the Chiropractor I was finally diagnosed with proof, I now have spinal adjustment and neck adjustments which work in the way that they relieve some of the symptoms and give me a better quality of life, but it could well of been sorted and dealt with long ago if only my Doctors gave me tests and scans when I was young I may not be as disabled as I am know.