Hi, I'm Sophie and I'm 31 years old. I live in the south-east of England and I have had chronic back pain for most of my life. I was 7 years old when the pain started, most of the time it was a deep ache in my lower back but sometimes the pain was sharp. My parents took me to see our GP so many times and each time were told that children didn't get back pain and that I was most likely faking it for attention. My parents never believed this but felt unable to get me any help without the GP's assistance. I was an active child and did several kinds of dance plus gymnastics, and the pain didn't often stop me from attending. My gymnastics teacher noticed that I couldn't do a straight forward roll, I always went slightly to be side, but she never explained why that concerned her.
By the time I was 14 years old the pain was just a part of my life, I knew what my limitations were and I could mostly control it with paracetamol and ibuprofen. At this point my dad's girlfriend was training to be a yoga teacher, and was studying the musculoskeletal system. She walked in on me in the bath and noticed that the muscles on the left side of my spine were massively more developed than those on the right. With this new evidence we went back to my GP and he realised I had Scoliosis. I was referred to an Orthopaedic surgeon who specialised in Scoliosis, and he was very concerned by how much pain I was in. I had regular X-Rays, several MRIs and a bone scan over the next couple of years. At 16 years of age, a scan showed what the problem was - I had been born with a Congenital malformation of the spine, my L4 and L5 vertebrae were fused into a wedge shape. This had caused my spine to curve, and was most likely the reason for my pain, which by this point was getting pretty bad and I was taking Tramdol on a daily basis. My consultant decided I would need corrective surgery, but we had to wait until I had stopped growing.
I had my first spinal surgery in 2002, at age 18. By this point my curvature was around 60 degrees and the pain was starting to make walking difficult. I had my spine fused from T10 to L5 and had a titanium rod put on either side of my spine with various bits of metalwork connecting them up. After a year of recovery I was mostly painfree. I had very little pain for 4 years, paracetamol was more than enough to deal with it. In the spring of 2006 I started to experience more pain, and I had an MRI to see if there was any problems with my fusion. My consultant couldn't find anything wrong, and since the pain was still very manageable I didn't pursue further testing. In the Spring of 2008 I started my nurses training at a well known children's hospital. I was on my 2nd placement of my 1st year when all of a sudden I was in excruciating pain. I don't remember what I did, whether I bent or twisted or I was just standing but one minute I was fine and the next I was crying with pain. It took 6 months for me to see a Spinal Surgeon as I was now living in London and didn't have a current doctor, however it was very clear on my X-Ray what had happened - the rod on the right side of my spine had snapped 3/4s of the way down. My consultant said I needed surgery to remove the broken metal work and that I might well need the fusion at that level revised. However I wanted to finish my training before I had the operation as the surgery had a recovery time of a year. I struggled on with the pain getting worse and worse, and with very little support from my university and the hospital I was training at.
Finally in the Summer of 2011 whilst on my final placement, the pain got so bad that I could barely walk. I was 10 weeks into a 12 week placement, only 6 shifts to complete before I would be a qualified nurse. At first I just took a couple of weeks off but it quickly became clear that I would not be able to complete the placement, I was devastated. Pushing myself through all that pain had been for nothing, if anything I had probably made it worse. My surgeon put me on the waiting list to remove all the metal work and redo the full spinal fusion. I remained hopeful that I might be able to finish my degree and qualify as a nurse after I recovered. My surgery was scheduled for January 2012, and as the date got closer I became more and more terrified. I remembered how bad the pain had been after my first surgery, I remembered how weak and frail I had felt and how helpless I had been. I knew it would be a long hard recovery and I was angry that I had to go through all this again. The morning of my surgery my surgeon told me he had decided to do a much smaller operation. He was convinced that the pain was being caused by the broken part of the rod moving, and it seemed plausible. It would be a much faster recovery time, which would mean I could get back to my training sooner.
By this point I couldn't walk very far at all even on a good day and so I rented a wheelchair to use once I got home. At first it seemed like I was recovering and that my pain level was considerable lower, however as soon as my GP started weaning down my OxyContin I was in agony again. I could no longer walk outside of my home, and even in the house I was holding on to furniture and the walls in order to take some strain off my pelvis and spine. My surgeon suggested a 2nd operation, this time to fuse between L5 and S1. He was very clear that the odds of it helping were very low, but he still wanted to try. That surgery was performed in November 2012. Whilst I was in hospital, a Physiotherapist suggested I use crutches to help me walk. They were an amazing amount of help, suddenly I could walk better as I could put weight through my shoulders and arms, which gave my lower back and hips a break. Stairs were no longer a battle, I had been going up up and down on my bum for almost a year by that point. However not everything about that hospital stint was that helpful, my 3rd spinal surgery had failed to relieve any of my pain. At 3 months post-op, my consultant bluntly told me that if the pain had no lessened by now it was unlikely to do so at all. I was probably going to be in this level of pain for the rest of my life.
Since then I have had several rounds of physio, with hydrotherapy being the most helpful. I went up steadily on my OxyContin dose, finally plateauing at 60mg bidaily with quick release oxycodone for breakthrough pain. I also take paracetamol and naproxen, and have tried both amytriptaline and gabapentin with neither giving me any relief. Last week I switched to Fentanyl patches, to see if I can get onto a lower dose of opiates. I had been experiencing some cognitive difficulties on the higher doses of OxyContin, some aphasia, forgetfulness and I found it difficult to follow conversations between more than a couple of people. I have been predominantly housebound since January 2012, whilst I can wheel my chair quite a lot now I still get tired and in pain - and therefore can't go out on my own. I spent most of 2012-2014 lying on my right side in bed since that was the only position that didn't cause me additional pain. This has all had a significant effect on my mood, and I have had several bad bouts of Depression. I have also felt very isolated, since I can't get out on my own and I don't know anyone in a similar position to me. My partner, friends and family have mostly been very sympathetic, but if you haven't experienced being in pain every second of every day it's hard to understand. People also get frustrated when I have to cancel plans due to bad day, or they get annoyed when I need to take a break from whatever we're doing. I get very tired especially if I'm sitting up for long periods of time. Basically I just want to get to know some people who get what I've been through and what my life actually is like. People generally only see me on good days, and therefore have no comprehension of what a bad day actually looks like.